To one and all, I'm so sorry that it's been so long since my last posting. I have not forgotten you, I just couldn't bring myself to write. The McDaniel family has had some rough times since last I wrote at Halloween. It's been pretty busy too. And frankly, I didn't want to write with bad news. So I kept waiting for our luck to change and next thing you know eight weeks have passed!
A long and winding road.....
A week after my last post Ben had a seizure. He had a little head cold at the time, so we were disappointed but not too alarmed. The ten days later he had another. No illness this time. Since then, he has steadily increased his seizure activity. Currently, he's having one every 7-10 days. (Only 2 have been associated with illness) Pretty much the same seizure pattern he had pre-diet. There are several confounding factors. 1) DIET: Since his last visit to Johns Hopkins, we've increased his calories from 800 cal/day to 1200 cal/day. This increase happened over the course of a month. A friend of ours who has done the diet said that her son didn't have a 400cal increase the whole 2 years he was on the diet.The nutritionist increased his calories because of his acute hunger and weight loss. He dropped down from 39 lbs to 31 since starting the diet. Ben is much happier with this calorie amount and we've been able to work in different meal plans d/t the increased calories. He's only gained 0.5-1lb and even then that fluctuates. So I'm hoping JHH will let him stay on the current calorie count. 2)LIQUIDS: Ben was an emotional wreck most of Oct & Nov.Even sleeping in our bed most nights. I think it was d/t the withdrawal of depakote which is a mood stabilizer and that he suddenly became aware of his hunger when he was on 800 cal. So, Ted and I let him drink pretty much any amount he wanted. He's supposed to be restricted to 1200cc/day but since his ketones were consistently Large-XL we let him slide. When the seizures started again with regularity we tightened up his fluid intake and since then his ketones have been XL almost every night. (Unfortunately no improvement in seizures as yet) One side note. Ben has to drink sugar free,decaf drinks. Last week I accidentally made his tea with regular tea bags. Ben drank a whole days worth of caffeinated tea. WOW was he flying! Up 3 times in the night. Up for good @ 5am and no nap! But most amazing, he was in a great mood! Laughing & jumping around. More words & better stamina & behavior. He was so much fun to have around. His ketones did drop to Large but I'm going to ask on our next trip if he can have one caffeine drink a day. With his seizure activity, I'm sure they'll say no but it's worth asking. The difference was amazing! 3) MEDS: We've weaned the keppra off completely. The depakote was stoppped on Sept 30th and although Ben's mood was miserable, he didn't start having seizures until we started weaning the Zonegran. We got down to 1/2 a capsule twice a day & then they came back. At this point we've gone back up on the Zonegran to 1 capsule twice a day and added back the depakote at 1 capsule twice a day (the depakote was really restarted because Ted and I kept asking for it d/t Ben's irritability.) We started the depakote on a Tues night @ bedtime and the next morning we saw an improvement in mood. We got him dressed & out the door to school without complaint. We'd been dragging him crying all the way since the middle of Oct. Ben's mood continues to improve but we haven't seen an improvement in seizure control. Ted and I are really worried that the Doose diagnosis we got in July as well as the optimistic prognosis may be wrong. I've emailed the team but I'm having a hard time getting a response from them. They're taking 7-10 days to reply if I get a response at all. And usually it's a cursory response omitting several of my questions. When asked specifically about the Doose diagnosis & prognosis, I was told "some kids need to stay on the diet and medication". How much med? How long? Does this change the long term prognosis? I don't call them because I don't feel we're in crisis mode and I'm saving that card for when I really need it. But sometimes we really feel isolated. Especially when you realize that we're dealing not just with meds but with a medical diet. So when we don't get any answer for several days, we have to make a "best guess" with every meal and every snack. Not what I expected from world renowned JHH.
To Medicaid or not to Medicaid, that is the question....
In late Oct we got notice from the North Carolina Social services office that Ben was at the top of the list for the medicaid Cap DD/MR program. This is a federally funded program for children who have a wide range of developmental delay or are mentally retarded. The program provides funding for a variety of services. We applied for the program when Ben was a year old and have been on the waiting list ever since. So we were very excited when we got the news. Then the other shoe dropped! To say that the application process is complicated is grossly understated. First I had to go to the social services office in Hillsborough to apply.(I went in 8:30 am sharp, the Friday before Thanksgiving and the room was already packed) I'll spare you most of the colorful details of the lobby. The drunk man sitting next to me, the 2 pregnant teenagers waiting to apply for food stamps. The highlight was the vigorous debate between 3 ladies as to whether Thanksgiving was this Saturday or the next. One women kept asking what today's date was as if that would support her argument that Thanksgiving was next Saturday. After an hour, I finally was shown into an office, only to spend the next 20 mins trying to convince the case manager that I was in the right office and that Ben did qualify for Cap DD/MR. She kept asking for our household income,even though it has no bearing on his application. I kept repeating that I was there for Cap DD/MR and she kept saying she never heard of it. She then asked me was I there to place Ben in an institution! That's apparently what she did, and all she knew how to do. Finally she went out and asked her supervisor. She came back to tell me that I needed to see someone 2 doors down (in the same office) so back out to the waiting area I went. A colossal case of the left hand not knowing what the right hand is doing. When I finally spoke to the right person, she knew exactly what I was talking about and what I needed to do. Unfortunately that was as good as it got. I then found out that even though I have hundreds of papers from multiple therapists, & physicians, the social services office would need to evaluate Ben to determine what support he needs. Also, that I would have to go to the social security office (a different federal entity) in Durham and apply for disability. Ben would be turned down, we already knew that but it's a prerequisite and I had to apply anyway ( I shudder to think what my wait will be like in that lobby). I also found out that as part of the application process I had to sign a release that gives the federal government access to all of Ben's current and future finances so that they can recoup any funds spent on his care. If I don't sign the release, I can't even apply. To add insult to injury, no one could tell me what services Ben "might" receive and what the cost of the services might be. It was insane. Everyone kept saying that they couldn't tell me what he would qualify for until they had evaluated him (again, remember the fact that he's already receiving therapy 8 times a week. they still seem unable to give a best guess)I said I just want an overall list of services provided as well as a fee for service list. they acted like I wasn't speaking English. All I wanted to know was how much Ben would be charged so we could determine if it was worth applying. I didn't want everyone to go through a lengthy application process only to decline it later. The case manager also told me I would need to close Ben's college fund. (He's only four years old and already I have to decide between funding now vs a future possibility of Ben going to college. How depressing! What do I have a crystal ball! How parents can guess the college prospects of their "normal kids"?!). Also, once approved, there is a minimum amount of services Ben must use annually. It's not like a secondary insurance card to be used as a back up. Now the fun part really starts. After much investigating, on my own, I found out the following: Cap DD/MR will fund the following: Anything insurance pays for but after insurance pays, so basically our co-pay. It won't pay for anything insurance won't cover. So "no" to the dietician at JHH ($800-$1000), "no" for the meds he has to get from the compounding pharmacy ($85 for a bottle of tylenol & Ibuprofen). It also won't pay for PT, OT or speech because he's already getting them from school. Even though school is only open 9 months of the year (also closed on teacher work days, holidays and semester breaks,etc). It won't pay for the teacher's aide that goes with him to school ($10/hr). It will pay for assistive devices (Ben doesn't use or need any). It will pay for a babysitter for respite care but the sitter can't watch Grace, only Ben. (So,no help there) It will pay for a bus/van & driver for transportation but the driver can't give any rescue medication should Ben have a seizure. (So, no thank you) Finally, the multitude of Ben's therapists & doctors either don't except Medicaid or their Medicaid roster is already full. And if we pass on the application at this time, and decide to reapply at a later date, it will most certainly be several more years before he is back at the top of the list. We are firmly stuck between a rock and a hard place.
No good deed goes unpunished......
I've been working at Duke for 10 years. For the past 2 years, I've worked 2 part time jobs on 2 different units. I work one evening shift per week on the ambulatory surgery unit. I also work 1 weekend night shift per week in the adult intensive care unit (MICU). So 20 hrs/week minimum. Both of these positions are "causal" positions which means I get a higher hourly salary but no benefits. In november I was informed by my manager that the MICU position had changed and that in order to keep my current hourly salary I must now work every weekend Sat & Sun(essentially, they've doubled the number of hours required) If I choose to con't to work only 1 weekend shift per week, my salary would be cut by $10-$15/hr (depending on if I work days or nights). This is despite the fact that I had no prior notice, my current contract has no expiration date, the contracts have never before been radically changed without grandfathering in the current employees. I explained to the director of nursing that if I could work every weekend, full time hours, I would sign on at Duke as a full time employee with full benefits. The most ironic thing is that my unit manager has said that she has no room for me on the schedule to work full time weekends. She uses me to cover empty slots but doesn't need me other than that. I am fighting to keep my current position as originally agreed upon. After all, Duke created the position, they offered it and I took it and have worked it consistently with no lapse in employment. I don't have a lot of hope but wish me luck.
Resolutions for 2008.....
Despite the current slump we're in, I resolve the following for 2008. To continue to make the best of each & every situation, good or bad. To work hard to make each day a good day for Ted, Ben & Grace. I promise I will not "come to terms with the situation" and I refuse to "accept things as they are".
And,as best as I can,I will try to bring love & laughter to my family and friends.
Ted and I want to thank you all again for your continued love and support. We're so grateful and we couldn't do it without you. We also sincerely wish you and yours all the best in the coming year.
Happy New Year! We hope it's a wonderful 2008!
e hënë, 31 dhjetor 2007
e mërkurë, 31 tetor 2007
Trick or Treat
TREAT
Ben remains seizure free and he continues to improve a little each day. Last week, I took him to therapy and felt confident enough to leave him there & run an errand. It was an amazing moment b/c I've been taking him to therapy at Emerge since he was 9 mos old. And in all that time, I have never been able to leave him there. I wait in the waiting room even though he's in therapy for an hour and a half. Last week I was desperate for a cup of coffee and I needed a birthday present. There is a book store right next door. So I thought I should be strong and make a run for it. I was nervous the whole time I was gone b/c even though I trust the staff @ Emerge completely, I took the diastat with me. So if he did have a seizure, he'd be stuck until I got back to him. The entire time I was gone (20-25 mins) I kept waiting for a phone call.
But, all went well. No seizure, I got some shopping done and a cafe latte to celebrate. It was a small step. Commonplace for most moms but a huge event for me.
TRICK
Ben's mood has also gotten better since his calories have increased. However he's still very emotional. We can't get him to sleep alone at night. He fights us going to bed and once he's asleep, if he's sleeping alone, he wakes up crying about 4am and we can't get him back to bed. So, he's been sleeping with one of us every night for the past 3 weeks. He's also having a hard time transitioning between activities & locations. And he cries any time anyone leaves. His teachers say that he does this at school when anyone leaves the classroom. Even though the Drs @ John's Hopkins don't think it's depakote withdrawal, I do think it's somehow related. It all started once we stopped the med. It's almost as if Ben is feeling very insecure and now that he's so alert, he's a little overwhelmed by life.
TREAT
We emailed the JHH Drs & gave them an update since we've been home. The dietitian
increased his calories again & he's now up to a total of 1075 per day. We also expect to get the go ahead to stop his final seizure med.
TRICK
Ben is so skinny it's amazing. He got too tall for his 3T pants so I bought him some new pants. All 4T. They fit in the length but are way too big (when he walks they fall down). Luckily my friend Dina can sew and will be able to add draw strings.
TREAT
My friends are so awesome. A bunch of them came over on a Sunday and cooked up a ton of Ben's favorite Keto foods. It was a great afternoon spent cooking & catching up. And I now have a freezer jammed with Keto food. It's made my life so much easier.
If I'm running late in the morning or rushing home with the kids for lunch and need to change to go to work, I just grab something out of the freezer. A major help and convenient (which is not normally something you have on the diet).
TRICK or TREAT
Ted & I took Ben & Grace trick or treating tonight. We debated going (we weren't sure how Ben would handle it)but decided at the last minute to give it a try. Ben was dressed as a king, Grace was a hobo (not an indication of my opinion of them, I bought the King & hobo costumes last year on clearance and they were the cutest ones left). They both looked adorable. Ben really didn't care about the candy. He just had a good time getting pushed around in the stroller and looking at all the sights. He's doing much better walking but in the dark, I think he would've struggled. And even though his stamina has improved, he still fatigues faster than his peers b/c of the low calories & we did a lot of walking up & down hills.
Grace on the other hand figured it out immediately and was all about the candy! She marched up to each door and pushed her way to the head of the line. Even though she was the littlest. On the sly, Ted and I were pulling the candy out of her bucket and giving it to the other kids. She caught on though. She realized that each time she went to the door, she'd get candy but that somehow, in between houses, her candy would disappear. She refused to give us her bucket after awhile and was trying desperately to eat the candy as fast as she could. Wrapper & all!
Happy Halloween to everyone.
I hope that all the ghosts and goblins who come to your door tonight are the 4 ft tall and living & breathing kind!
Ben remains seizure free and he continues to improve a little each day. Last week, I took him to therapy and felt confident enough to leave him there & run an errand. It was an amazing moment b/c I've been taking him to therapy at Emerge since he was 9 mos old. And in all that time, I have never been able to leave him there. I wait in the waiting room even though he's in therapy for an hour and a half. Last week I was desperate for a cup of coffee and I needed a birthday present. There is a book store right next door. So I thought I should be strong and make a run for it. I was nervous the whole time I was gone b/c even though I trust the staff @ Emerge completely, I took the diastat with me. So if he did have a seizure, he'd be stuck until I got back to him. The entire time I was gone (20-25 mins) I kept waiting for a phone call.
But, all went well. No seizure, I got some shopping done and a cafe latte to celebrate. It was a small step. Commonplace for most moms but a huge event for me.
TRICK
Ben's mood has also gotten better since his calories have increased. However he's still very emotional. We can't get him to sleep alone at night. He fights us going to bed and once he's asleep, if he's sleeping alone, he wakes up crying about 4am and we can't get him back to bed. So, he's been sleeping with one of us every night for the past 3 weeks. He's also having a hard time transitioning between activities & locations. And he cries any time anyone leaves. His teachers say that he does this at school when anyone leaves the classroom. Even though the Drs @ John's Hopkins don't think it's depakote withdrawal, I do think it's somehow related. It all started once we stopped the med. It's almost as if Ben is feeling very insecure and now that he's so alert, he's a little overwhelmed by life.
TREAT
We emailed the JHH Drs & gave them an update since we've been home. The dietitian
increased his calories again & he's now up to a total of 1075 per day. We also expect to get the go ahead to stop his final seizure med.
TRICK
Ben is so skinny it's amazing. He got too tall for his 3T pants so I bought him some new pants. All 4T. They fit in the length but are way too big (when he walks they fall down). Luckily my friend Dina can sew and will be able to add draw strings.
TREAT
My friends are so awesome. A bunch of them came over on a Sunday and cooked up a ton of Ben's favorite Keto foods. It was a great afternoon spent cooking & catching up. And I now have a freezer jammed with Keto food. It's made my life so much easier.
If I'm running late in the morning or rushing home with the kids for lunch and need to change to go to work, I just grab something out of the freezer. A major help and convenient (which is not normally something you have on the diet).
TRICK or TREAT
Ted & I took Ben & Grace trick or treating tonight. We debated going (we weren't sure how Ben would handle it)but decided at the last minute to give it a try. Ben was dressed as a king, Grace was a hobo (not an indication of my opinion of them, I bought the King & hobo costumes last year on clearance and they were the cutest ones left). They both looked adorable. Ben really didn't care about the candy. He just had a good time getting pushed around in the stroller and looking at all the sights. He's doing much better walking but in the dark, I think he would've struggled. And even though his stamina has improved, he still fatigues faster than his peers b/c of the low calories & we did a lot of walking up & down hills.
Grace on the other hand figured it out immediately and was all about the candy! She marched up to each door and pushed her way to the head of the line. Even though she was the littlest. On the sly, Ted and I were pulling the candy out of her bucket and giving it to the other kids. She caught on though. She realized that each time she went to the door, she'd get candy but that somehow, in between houses, her candy would disappear. She refused to give us her bucket after awhile and was trying desperately to eat the candy as fast as she could. Wrapper & all!
Happy Halloween to everyone.
I hope that all the ghosts and goblins who come to your door tonight are the 4 ft tall and living & breathing kind!
e enjte, 18 tetor 2007
Be careful what you wish for.....
It's been a real roller coaster ride since my last posting. Ted and I were so anxious to stop Ben's next seizure med. Once we stopped it, Ben would only be on one low dose seizure med. It took 3 weeks but we finally stopped the Depakote at the end of Sept. Yeah!! And still no seizures, Bigger YEAH!!!
And then psychotic Ben showed up....
Five days after the depakote stopped, Ben started having trouble sleeping and was refusing to take his afternoon nap. We thought this was a good thing b/c maybe it meant more energy. Then Ben became increasingly more irritable & emotional and was having sudden crying jags. Ted and I thought Ben might be having Depakote withdrawal or at least that he was unable to cope without the sedative effects of the depakote. (Depakote is a mood stabilizer and is used to treat mania. Ben has been on it since he was a year old so this is a major transition). We even considered restarting the depakote just one tab a day. I called my cousin who is a pharmacist to get his opinion on the withdrawal theory. He said he thought it was too far out for withdrawal symptoms & he didn't recommend resuming the depakote.
Because we had an appointment @ Johns Hopkins this past Tues, we were just trying to ride it out. Last weekend Ben had spent 2 solid days crying and had lost his voice. We could not comfort him and the only way he would sleep is if Ted slept with him. And even then he slept very little. Finally last Sunday morning after another sleepless night Ted called the Johns Hopkins on call resident & they prescribed Ativan. Believe it or not, it really didn't help. So finally it was time to go to JHH. We drove him to Baltimore on Monday night, crying all the way. We made desperation stops at fast food places so that they could heat up Ben's meals (Wendy's & Arby's were great & didn't hesitate to help) and also just to have a chance to get out of the car & away from the crying. Grace was with us & the poor girl couldn't figure out what was going on. She kept looking over at Ben trying to figure out the problem. But god bless Grace, she kept her cool & didn't give us any trouble. She just went along for the ride.
Once we got him to he clinic on Tues, the Drs said it was all hunger. Nothing to do with the Depakote except that he may now be more aware of how hungry he is. Ben just needed more calories. They gave him one more snack per day & increased his meals by a whopping 25 calories. So he went from 800 cal/day to 975. It didn't seem like much and I was very skeptical that hunger was the only problem. He's been on the diet for 3 mos, had not really c/o hunger, in fact he has refused alot of the foods. And this emotional meltdown only started two weeks ago.
While we were in the clinic we saw 2 of the other families who started the program with us(and I had an email waiting for me when I got home from the other mom. There are 4 families total). Great news is that all of us are still on the diet. And everyone has had improvement in their seizure control. We found out that a couple of the kids have had weight gains and have had to decrease their calories.I think Ben is the only one who has been completely seizure free. So I guess even though these past 2 weeks have been very upsetting, I'd rather add to the diet than have to take away.
We got back from JHH on Tues afternoon and things started to improve almost immediately. I can't believe that such a small calorie increase has made such a big difference but it's really helped. Ben is still hungry and he follows me around in the kitchen alot but he's not constantly crying inconsolably. He usually is asking for food 1-2 hrs after eating but it's right about time for food anyway so there's not too much of a delay. He is definitely very alert and aware now of what foods are around him & what everyone else is eating. He has had 3 attempts this week to swipe food. Each time he was stopped he had a short meltdown but we were able to get him out of it. I guess this is a good thing b/c I think the 3 previous months he was too foggy mentally to be acutely aware of his surroundings. He also probably wasn't as perceptive about having an empty tummy. Back then he really only cried when I made him eat foods he didn't like or when he came across food favorites (pizza, cake etc). Otherise he wasn't really food seeking. Looks like that's changing. It's a good thing we have a safety lock on the freezer & may need one for the refrig.
Another good thing is that we have consistently been able to find new favorite keto foods for Ben. And my friends and family have been a huge help keeping me stocked up. My mom was down at the end of Sept & we made up & froze at least 40 meals. We also created a few new favorites. (Chicken noodle soup & macadamia nut cookies).
Macadamia nuts are a major staple in Ben's diet. He eats 2 a day as a "free" food. (I know, big deal. But we put them in a little bowl or cup and make a HUGE deal over them. So he thinks he's getting a big snack) And they are also ground up & used as a base in a lot of the cookie & sweet treat receipies. Luckily our family friends, Steve & Jane Haky, are currently living in Hawaii & have been able to ship us some. (The retail price is insane!) We're also having our first "Keto cooking party". A bunch of my girlfriends are coming over tomorrow and we're going to cook up alot of Ben's favorite meals and freeze them. I am providing lunch (non-keto food of course) & libation. I think it'll be alot of fun. It'll be a great way to share the work & have some social time. I know it'll be a huge help to me.
Once again, I am so grateful for the help & support from friends & family.
It lightens the load & keeps me sane.
All the best to you and yours.
And then psychotic Ben showed up....
Five days after the depakote stopped, Ben started having trouble sleeping and was refusing to take his afternoon nap. We thought this was a good thing b/c maybe it meant more energy. Then Ben became increasingly more irritable & emotional and was having sudden crying jags. Ted and I thought Ben might be having Depakote withdrawal or at least that he was unable to cope without the sedative effects of the depakote. (Depakote is a mood stabilizer and is used to treat mania. Ben has been on it since he was a year old so this is a major transition). We even considered restarting the depakote just one tab a day. I called my cousin who is a pharmacist to get his opinion on the withdrawal theory. He said he thought it was too far out for withdrawal symptoms & he didn't recommend resuming the depakote.
Because we had an appointment @ Johns Hopkins this past Tues, we were just trying to ride it out. Last weekend Ben had spent 2 solid days crying and had lost his voice. We could not comfort him and the only way he would sleep is if Ted slept with him. And even then he slept very little. Finally last Sunday morning after another sleepless night Ted called the Johns Hopkins on call resident & they prescribed Ativan. Believe it or not, it really didn't help. So finally it was time to go to JHH. We drove him to Baltimore on Monday night, crying all the way. We made desperation stops at fast food places so that they could heat up Ben's meals (Wendy's & Arby's were great & didn't hesitate to help) and also just to have a chance to get out of the car & away from the crying. Grace was with us & the poor girl couldn't figure out what was going on. She kept looking over at Ben trying to figure out the problem. But god bless Grace, she kept her cool & didn't give us any trouble. She just went along for the ride.
Once we got him to he clinic on Tues, the Drs said it was all hunger. Nothing to do with the Depakote except that he may now be more aware of how hungry he is. Ben just needed more calories. They gave him one more snack per day & increased his meals by a whopping 25 calories. So he went from 800 cal/day to 975. It didn't seem like much and I was very skeptical that hunger was the only problem. He's been on the diet for 3 mos, had not really c/o hunger, in fact he has refused alot of the foods. And this emotional meltdown only started two weeks ago.
While we were in the clinic we saw 2 of the other families who started the program with us(and I had an email waiting for me when I got home from the other mom. There are 4 families total). Great news is that all of us are still on the diet. And everyone has had improvement in their seizure control. We found out that a couple of the kids have had weight gains and have had to decrease their calories.I think Ben is the only one who has been completely seizure free. So I guess even though these past 2 weeks have been very upsetting, I'd rather add to the diet than have to take away.
We got back from JHH on Tues afternoon and things started to improve almost immediately. I can't believe that such a small calorie increase has made such a big difference but it's really helped. Ben is still hungry and he follows me around in the kitchen alot but he's not constantly crying inconsolably. He usually is asking for food 1-2 hrs after eating but it's right about time for food anyway so there's not too much of a delay. He is definitely very alert and aware now of what foods are around him & what everyone else is eating. He has had 3 attempts this week to swipe food. Each time he was stopped he had a short meltdown but we were able to get him out of it. I guess this is a good thing b/c I think the 3 previous months he was too foggy mentally to be acutely aware of his surroundings. He also probably wasn't as perceptive about having an empty tummy. Back then he really only cried when I made him eat foods he didn't like or when he came across food favorites (pizza, cake etc). Otherise he wasn't really food seeking. Looks like that's changing. It's a good thing we have a safety lock on the freezer & may need one for the refrig.
Another good thing is that we have consistently been able to find new favorite keto foods for Ben. And my friends and family have been a huge help keeping me stocked up. My mom was down at the end of Sept & we made up & froze at least 40 meals. We also created a few new favorites. (Chicken noodle soup & macadamia nut cookies).
Macadamia nuts are a major staple in Ben's diet. He eats 2 a day as a "free" food. (I know, big deal. But we put them in a little bowl or cup and make a HUGE deal over them. So he thinks he's getting a big snack) And they are also ground up & used as a base in a lot of the cookie & sweet treat receipies. Luckily our family friends, Steve & Jane Haky, are currently living in Hawaii & have been able to ship us some. (The retail price is insane!) We're also having our first "Keto cooking party". A bunch of my girlfriends are coming over tomorrow and we're going to cook up alot of Ben's favorite meals and freeze them. I am providing lunch (non-keto food of course) & libation. I think it'll be alot of fun. It'll be a great way to share the work & have some social time. I know it'll be a huge help to me.
Once again, I am so grateful for the help & support from friends & family.
It lightens the load & keeps me sane.
All the best to you and yours.
e hënë, 17 shtator 2007
If I keep running this fast, I'm going to catch up with my future self !
I'm sorry it's taken me so long to write. Ben & Grace both started pre-school this month (Ben goes 3 mornings a week & Grace goes 2, of course they don't go on the same days so still no alone time for mom). I've also been working 32-48 hrs a week, rotating shifts. I only planned on working 20 hrs a week but recently I've had a lot of requests from staff & co-workers for coverage. And, because I'm a casual staffer, I have a terrible habit of thinking, "I better take the extra time when I can".
This tendency combined with our expenses makes me over book myself. Each time I'm in the middle of a work stretch I swear I won't do it again. That promise usually lasts till the next schedule.
School Daze.....
Ben started pre-K @ our local public school. All is well. I was able to find two really sweet UNC students to go with him. Jordan & Reecie. Even though the school has staff in the classroom and a full time nurse, I offered to hire someone as a teachers aide to off-set any extra time Ben may take from the teachers. Ben spends part of his morning in the Headstart class and part in the special ed class room, so I thought another classroom aide could help him transition. Finally b/c Ben can't eat any food when he's @ school, except what he brings, I thought the girls could help keep Ben from cheating. Especially if there's a birthday party or class treat.
Ben is doing really well and generally enjoys being there. I think the teachers, therapists and IEP coordinator have done a great job coming up with an individualized education plan for Ben and they are sticking to it. Just this week, they decided to break the larger class into two different recess groups b/c they felt that the smaller kids with more more needs would benefit from their own playground time. I'm sure Ben was getting creamed out there with the stronger, faster kids.
We've really seen an improvement in Ben's speech. He has even more new words and he's using "-ing", "-ed", and pronouns. Every week we see improvements that are subtle and yet profound(if that makes sense). Recently, Ben kept getting of bed when he should have been asleep. When Ted went down the hall, Ben heard him coming, he shut the door,jumped back in bed & covered up. When Ted opened the door & said "Ben stay in bed", Ben sat up and said "What?!" As in "What, I didn't do anything!" Where did that come from? I don't think he learned it from his speech therapist.
With his speech, he still mostly speaks in babble but now he sometimes will continue a conversation thread. He'll say something, we'll answer and then he'll say another follow up word that's either a question or another word related to the same subject. It's a conversation Ben McD style. Ironically, as his speech/vocabulary has improved, he sometimes has an even harder time talking. In the past, Ben mostly talked in babble, on and on and on. If you were lucky you'd get 1 or 2 words in the whole string that you could understand. Now that Ben has more words & a better understanding of language, I've noticed that he says "umm" and that he can get really stuck. I think he's trying to find the right word instead of just babbling on b/c now he understands that the words matter. What I've always wanted to know is, when he babbles on in gibberish for 10-15mins straight, did he think we understood him or did he know we didn't but didn't care & babbled on anyway. (Maybe his maternal grandmother can give us an answer to that one! Ha, Ha Grammy!)
Weebles Wooble but they don't fall down.....
We've also seen major improvement with Ben's coordination, balance & stamina. Ben has been off Keppra for over a month & he is now almost off Depakote. Saturday 9/29 will be his last dose. We're so excited and it's really amazing b/c Ben has been on Depakote almost continuously since he was 9 mos old. Like Keppra, Depakote causes major balance & coordination problems. As well as fatigue & irritability. As his dose has decreased,Ben's coordination has improved. I wouldn't compare him to Fred Astaire and he's still not "normal" but to me, his coordination has so improved, he's almost graceful. This past week, Ted saw Ben run back from the TV to the couch and in one smooth movement, without stopping, he stood on one foot,bent up his knee & flung himself on to the couch. Not a very big deal to most kids. In fact I'm sure they do the same thing dozens of times a day, but for Ben it's a very big deal. Before now, he could never have done it with his poor balance & coordination. In fact his motor planning is so bad, I don't think he could've figured out how to do it. He normally walks stiffly over to the couch,holds on with both hands & puts one knee up and then the other. Very stilted & deliberate movements.
I had a nice moment with Ben yesterday. I ran some errands and had to stop in 3 stores in the same shopping center. Ben was with me and I parked the car & he walked with me holding my hand the whole time. From store to store and in & out of each one of them. He never tripped, stumbled or whined b/c he was tired and wanted to be picked up.It was so enjoyable to walk along holding his hand. Something so mundane and taken for granted by most moms but it was an amazing moment for me. Ben has always had such a hard time walking, I usually end up carrying him. In fact at times I've had some glances from other moms wondering why I'm carrying such a big kid. It was just easier & faster. (And I have been know to carry both Ben & Grace at the same time! Who needs a home gym?!) Walking with him yesterday was so easy,so uneventful and so much fun!
Have you called Jenny yet?.....
The diet continues. Ben is doing well with some foods (peanut butter balls still rule) and his 3 new favorites are spaghetti, red sauce or butter (made with squash) & macaroni & cheese, made with zucchini. None of them are big portion sizes but Ben really,likes them. In fact he'll sit & eat the red sauce spaghetti & pay no attention to what we're eating. We're on the search for new protein options. Ben has sworn off cheese sticks, hot dogs & salad with mayo (who can blame him after eating it for 3 months!) He doesn't like bacon, tuna, eggs, chicken,ham or turkey. So we're pretty much only have ground beef & pepperoni to try at this point. We'll give it a shot then start over with the reject list. Failure is not an option.
We do have difficult moments. We had a surprise b-day party for Ted a little while ago & the group ordered pizza (Ben's favorite). I had parked him in the basement family room watching Sesame street so he missed most of it. But at one point he came upstairs and ran off with the pizza box. Luckily it was empty. Then later when we had birthday cake, he cried. I try not to dwell on those moments too much. I just think about the big picture and the hope for a better future for Ben. Bottom line is that because of the diet Ben will soon be on only one seizure med (Zonegran & it's a very low dose). He's only had one seizure since he started the diet on July 9th and that was when he was sick. So his future is looking really bright.
Keeping the faith....
Since Ben has come into our lives, Ted and I have really tried to keep the faith & focus on the positive things in life (Sometimes are easier than others & Ted is better at it than I am. He doesn't have the worry gene). With all the ups and downs life brings us, we try to stay strong and celebrate even the smallest joys.
Thanks to all of you for helping us to do that. We could never do it without you.
We can't solve anyone's problem but our own. That's how it's supposed to be. We can only be there in love while others solve their own problems.
-T.C. Whittaker
This tendency combined with our expenses makes me over book myself. Each time I'm in the middle of a work stretch I swear I won't do it again. That promise usually lasts till the next schedule.
School Daze.....
Ben started pre-K @ our local public school. All is well. I was able to find two really sweet UNC students to go with him. Jordan & Reecie. Even though the school has staff in the classroom and a full time nurse, I offered to hire someone as a teachers aide to off-set any extra time Ben may take from the teachers. Ben spends part of his morning in the Headstart class and part in the special ed class room, so I thought another classroom aide could help him transition. Finally b/c Ben can't eat any food when he's @ school, except what he brings, I thought the girls could help keep Ben from cheating. Especially if there's a birthday party or class treat.
Ben is doing really well and generally enjoys being there. I think the teachers, therapists and IEP coordinator have done a great job coming up with an individualized education plan for Ben and they are sticking to it. Just this week, they decided to break the larger class into two different recess groups b/c they felt that the smaller kids with more more needs would benefit from their own playground time. I'm sure Ben was getting creamed out there with the stronger, faster kids.
We've really seen an improvement in Ben's speech. He has even more new words and he's using "-ing", "-ed", and pronouns. Every week we see improvements that are subtle and yet profound(if that makes sense). Recently, Ben kept getting of bed when he should have been asleep. When Ted went down the hall, Ben heard him coming, he shut the door,jumped back in bed & covered up. When Ted opened the door & said "Ben stay in bed", Ben sat up and said "What?!" As in "What, I didn't do anything!" Where did that come from? I don't think he learned it from his speech therapist.
With his speech, he still mostly speaks in babble but now he sometimes will continue a conversation thread. He'll say something, we'll answer and then he'll say another follow up word that's either a question or another word related to the same subject. It's a conversation Ben McD style. Ironically, as his speech/vocabulary has improved, he sometimes has an even harder time talking. In the past, Ben mostly talked in babble, on and on and on. If you were lucky you'd get 1 or 2 words in the whole string that you could understand. Now that Ben has more words & a better understanding of language, I've noticed that he says "umm" and that he can get really stuck. I think he's trying to find the right word instead of just babbling on b/c now he understands that the words matter. What I've always wanted to know is, when he babbles on in gibberish for 10-15mins straight, did he think we understood him or did he know we didn't but didn't care & babbled on anyway. (Maybe his maternal grandmother can give us an answer to that one! Ha, Ha Grammy!)
Weebles Wooble but they don't fall down.....
We've also seen major improvement with Ben's coordination, balance & stamina. Ben has been off Keppra for over a month & he is now almost off Depakote. Saturday 9/29 will be his last dose. We're so excited and it's really amazing b/c Ben has been on Depakote almost continuously since he was 9 mos old. Like Keppra, Depakote causes major balance & coordination problems. As well as fatigue & irritability. As his dose has decreased,Ben's coordination has improved. I wouldn't compare him to Fred Astaire and he's still not "normal" but to me, his coordination has so improved, he's almost graceful. This past week, Ted saw Ben run back from the TV to the couch and in one smooth movement, without stopping, he stood on one foot,bent up his knee & flung himself on to the couch. Not a very big deal to most kids. In fact I'm sure they do the same thing dozens of times a day, but for Ben it's a very big deal. Before now, he could never have done it with his poor balance & coordination. In fact his motor planning is so bad, I don't think he could've figured out how to do it. He normally walks stiffly over to the couch,holds on with both hands & puts one knee up and then the other. Very stilted & deliberate movements.
I had a nice moment with Ben yesterday. I ran some errands and had to stop in 3 stores in the same shopping center. Ben was with me and I parked the car & he walked with me holding my hand the whole time. From store to store and in & out of each one of them. He never tripped, stumbled or whined b/c he was tired and wanted to be picked up.It was so enjoyable to walk along holding his hand. Something so mundane and taken for granted by most moms but it was an amazing moment for me. Ben has always had such a hard time walking, I usually end up carrying him. In fact at times I've had some glances from other moms wondering why I'm carrying such a big kid. It was just easier & faster. (And I have been know to carry both Ben & Grace at the same time! Who needs a home gym?!) Walking with him yesterday was so easy,so uneventful and so much fun!
Have you called Jenny yet?.....
The diet continues. Ben is doing well with some foods (peanut butter balls still rule) and his 3 new favorites are spaghetti, red sauce or butter (made with squash) & macaroni & cheese, made with zucchini. None of them are big portion sizes but Ben really,likes them. In fact he'll sit & eat the red sauce spaghetti & pay no attention to what we're eating. We're on the search for new protein options. Ben has sworn off cheese sticks, hot dogs & salad with mayo (who can blame him after eating it for 3 months!) He doesn't like bacon, tuna, eggs, chicken,ham or turkey. So we're pretty much only have ground beef & pepperoni to try at this point. We'll give it a shot then start over with the reject list. Failure is not an option.
We do have difficult moments. We had a surprise b-day party for Ted a little while ago & the group ordered pizza (Ben's favorite). I had parked him in the basement family room watching Sesame street so he missed most of it. But at one point he came upstairs and ran off with the pizza box. Luckily it was empty. Then later when we had birthday cake, he cried. I try not to dwell on those moments too much. I just think about the big picture and the hope for a better future for Ben. Bottom line is that because of the diet Ben will soon be on only one seizure med (Zonegran & it's a very low dose). He's only had one seizure since he started the diet on July 9th and that was when he was sick. So his future is looking really bright.
Keeping the faith....
Since Ben has come into our lives, Ted and I have really tried to keep the faith & focus on the positive things in life (Sometimes are easier than others & Ted is better at it than I am. He doesn't have the worry gene). With all the ups and downs life brings us, we try to stay strong and celebrate even the smallest joys.
Thanks to all of you for helping us to do that. We could never do it without you.
We can't solve anyone's problem but our own. That's how it's supposed to be. We can only be there in love while others solve their own problems.
-T.C. Whittaker
e martë, 28 gusht 2007
Sadly, the streak is broken......
Sad to say, just a few days after my last post, Ben had a seizure. It was another large seizure requiring Diastat but it broke almost immediately after I gave the medication. So it seems that the diet has not only reduced the number of the seizures but it may be helping to minimize the severity of the seizures as well. (I'm not sure about that and will definitely ask the Dr's next time we're at JHH).
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year
A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove
But the world may be different
Because I was important
In the life of a child
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year
A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove
But the world may be different
Because I was important
In the life of a child
e shtunë, 11 gusht 2007
Happy Anniversary !
Congratulations to Ben (and us), we made it through our first month on the diet! It's been so hectic, weighing food & cooking meals, the days have gone really fast but the past 30 days have also seemed like a lifetime. Ben is doing really well. He's still seizure free and we're thrilled. In the past year, the longest time he's ever gone without a seizure was three weeks, so we are now in uncharted territory. It's amazing and sometimes a little scary. In the past,trips to Costco have usually resulted in a seizure (believe it or not). I think he has inherited his dad's aversion to shopping. Today we went and we had no problem, not even anything remotely weird on Ben's part. We have also gotten into the habit of checking on Ben if he falls asleep when we're driving in the minivan (especially if it's dark). It's always hard to know if he's asleep or if he's having a seizure. Now it's a little less scary driving with him b/c chances are, he's just asleep.
Some things are still a little tough. Ben has had quite a few days when he's really hungry. We had some friends over to swim this week and Ben whined alot b/c they brought food and he was still really hungry after dinner. I keep trying to get him to drink fruit flavored water or calorie & caffeine free soda to help curb his appetite but he really doesn't like it. I also bought a machine to make him shaved ice (alot like snow cones only smoother). He doesn't like the shaved ice either, it's to cold, but I'm not giving up yet. I have to find something else that will work as a snack & help with the hunger.
I've also realized that I've been depriving Grace. Since we started the diet, we haven't been eating any bread, bananas or crackers (all Ben's favorites). Last week, out of desperation, I made a half a PB&J sandwich for Grace. She was so thrilled, she hummed while she ate it & her hands were shaking as she stuffed the whole thing in her mouth. She choked it down & immediately asked for more. I felt so bad, the next morning I gave her a banana. She tried to stuff the whole thing in her mouth and she ended up eating 3 whole bananas for breakfast! (I hope this is just a phase or we'll be entering her in competitive eating competitions!)
We have hooked up with a compounding pharmacy. They will have to make any meds Ben may need if he gets sick (e.g. carbohydrate free antibiotics, allergy meds, motrin). They are a very small,very funky little pharmacy (only 4 staff members and no cash register!) But they are really thorough and go the extra mile (the pharmacist figured out a way to flavor Ben's Motrin & benadryl without adding carbs). The kicker is the expense. $85 for 2 small bottles of Motrin & benadryl. Something most folks get to pick up at any drug store or grocery. And, since they are not perscriptions, I don't think we'll be reimbursed by insurance. To add insult to injury, because they are"custom made" & not commercially manufactured, they expire in 8 weeks, 12 weeks tops! Oh well, the good news is that we are weaning Ben off his Keppra. It should take about 3 weeks till he's off completely. We then wait a week and if all is well, we'll then start weaning the Depakote. So hopefully we'll have less meds and less expense once we get him off his seizure meds.
We've also been able to get Ben a place at the local elementary school this fall. We're very excited b/c the school is very close to us and they have a full time school nurse so I know he'll be in good hands. I will probably still have to hire someone to go with him. Because his time will be split between 2 class rooms and to make sure he gets his snack when he's supposed to and that he doesn't eat anything else, he'll have a care giver/aide to facilitate his transitioning between classrooms and to assist/monitor Ben as needed. I'm totally willing to do it in order to help Ben and his teachers. School start at the end of the month. I'll have to talk with Ben's teachers & the nurse before then to do some staff ed. I also have to interview & hire the caregiver/aide. It's going to be a crazy couple of weeks. But compared to the roller coaster ride that is epilepsy, it's smooth sailing!
Hope everyone is well and staying cool. Enjoy the last dog days of summer!!
Some things are still a little tough. Ben has had quite a few days when he's really hungry. We had some friends over to swim this week and Ben whined alot b/c they brought food and he was still really hungry after dinner. I keep trying to get him to drink fruit flavored water or calorie & caffeine free soda to help curb his appetite but he really doesn't like it. I also bought a machine to make him shaved ice (alot like snow cones only smoother). He doesn't like the shaved ice either, it's to cold, but I'm not giving up yet. I have to find something else that will work as a snack & help with the hunger.
I've also realized that I've been depriving Grace. Since we started the diet, we haven't been eating any bread, bananas or crackers (all Ben's favorites). Last week, out of desperation, I made a half a PB&J sandwich for Grace. She was so thrilled, she hummed while she ate it & her hands were shaking as she stuffed the whole thing in her mouth. She choked it down & immediately asked for more. I felt so bad, the next morning I gave her a banana. She tried to stuff the whole thing in her mouth and she ended up eating 3 whole bananas for breakfast! (I hope this is just a phase or we'll be entering her in competitive eating competitions!)
We have hooked up with a compounding pharmacy. They will have to make any meds Ben may need if he gets sick (e.g. carbohydrate free antibiotics, allergy meds, motrin). They are a very small,very funky little pharmacy (only 4 staff members and no cash register!) But they are really thorough and go the extra mile (the pharmacist figured out a way to flavor Ben's Motrin & benadryl without adding carbs). The kicker is the expense. $85 for 2 small bottles of Motrin & benadryl. Something most folks get to pick up at any drug store or grocery. And, since they are not perscriptions, I don't think we'll be reimbursed by insurance. To add insult to injury, because they are"custom made" & not commercially manufactured, they expire in 8 weeks, 12 weeks tops! Oh well, the good news is that we are weaning Ben off his Keppra. It should take about 3 weeks till he's off completely. We then wait a week and if all is well, we'll then start weaning the Depakote. So hopefully we'll have less meds and less expense once we get him off his seizure meds.
We've also been able to get Ben a place at the local elementary school this fall. We're very excited b/c the school is very close to us and they have a full time school nurse so I know he'll be in good hands. I will probably still have to hire someone to go with him. Because his time will be split between 2 class rooms and to make sure he gets his snack when he's supposed to and that he doesn't eat anything else, he'll have a care giver/aide to facilitate his transitioning between classrooms and to assist/monitor Ben as needed. I'm totally willing to do it in order to help Ben and his teachers. School start at the end of the month. I'll have to talk with Ben's teachers & the nurse before then to do some staff ed. I also have to interview & hire the caregiver/aide. It's going to be a crazy couple of weeks. But compared to the roller coaster ride that is epilepsy, it's smooth sailing!
Hope everyone is well and staying cool. Enjoy the last dog days of summer!!
e martë, 31 korrik 2007
I think we're getting the hang of this....keep your fingers crossed!
We've just finished week 3 on the diet and we're all doing pretty well. We're weighing & measuring and writing everything down. With 3 meals & 2 snacks a day, we're using a lot of dishes & a ton of zip lock bags. Thankfully my friend Sara & Debbie each came over on a weekend and helped me get the meals ready for the next week. It was a major help.(BTW, do you know you can buy pasteurized eggs in the shell? I needed them for Ben's eggnog. How do they do that?)It was so nice to be able to grab something quick when Ben was starving or if we were late out the door. I think I'm going to have regular keto cooking sessions with my friends. I'll just have to bribe them with some non-keto food.
Ben was really hungry the first week. He kept asking for more food (even begging for carrots!) and he'd cry when his snack was done b/c he wanted more. One of the worst moments was at church on Sunday when he was so low energy that he actually laid down on the church playground. He was fine, he just didn't have any energy left. I felt so bad for Ben & so guilty. I wanted to call the dietitian and ask for more food but then in true Ben fashion, we had a role reversal on week 2. He didn't want to eat all of his foods and some nights he didn't eat any dinner at all. We didn't make it through one day without Ben refusing some food or a meal. The problem with the Keto diet is that you must eat all the food in each meal. So,I am definitely not going to ask for more food now b/c that'll just be more food to try to get Ben to eat. The keto literature says that the higher you can keep the ketones and the longer you can keep them high, the better chance you have of seizure reduction. And less calories means higher ketones. So unless Ben starts having major energy issues, I think we'll just wait & see.
The good news is that we've been able to keep Ben's ketones Large-XL (the highest on the scale)since he started the diet. And best of all Ben is still seizure free.YEAH! It's been almost a month since his last seizure which is the longest break he's had since last Sept. His Drs are going to let us start weaning off the meds so we are very excited. It's been amazing to see the little improvements in Ben. He's more focused,steadier on his feet and has new words everyday. Yesterday he bit Grace (She bit him first!) and he practically put himself in timeout! It's really going to be incredible seeing Ben come off his meds. We haven't know him without major medications in his system since he was nine months old. Even then he was seizing so frequently and had such developmental delay, we didn't get a good sense of who he was. I can't wait to get to know the real Ben.
Ben was really hungry the first week. He kept asking for more food (even begging for carrots!) and he'd cry when his snack was done b/c he wanted more. One of the worst moments was at church on Sunday when he was so low energy that he actually laid down on the church playground. He was fine, he just didn't have any energy left. I felt so bad for Ben & so guilty. I wanted to call the dietitian and ask for more food but then in true Ben fashion, we had a role reversal on week 2. He didn't want to eat all of his foods and some nights he didn't eat any dinner at all. We didn't make it through one day without Ben refusing some food or a meal. The problem with the Keto diet is that you must eat all the food in each meal. So,I am definitely not going to ask for more food now b/c that'll just be more food to try to get Ben to eat. The keto literature says that the higher you can keep the ketones and the longer you can keep them high, the better chance you have of seizure reduction. And less calories means higher ketones. So unless Ben starts having major energy issues, I think we'll just wait & see.
The good news is that we've been able to keep Ben's ketones Large-XL (the highest on the scale)since he started the diet. And best of all Ben is still seizure free.YEAH! It's been almost a month since his last seizure which is the longest break he's had since last Sept. His Drs are going to let us start weaning off the meds so we are very excited. It's been amazing to see the little improvements in Ben. He's more focused,steadier on his feet and has new words everyday. Yesterday he bit Grace (She bit him first!) and he practically put himself in timeout! It's really going to be incredible seeing Ben come off his meds. We haven't know him without major medications in his system since he was nine months old. Even then he was seizing so frequently and had such developmental delay, we didn't get a good sense of who he was. I can't wait to get to know the real Ben.
e shtunë, 21 korrik 2007
One week down, only 103 left to go.......
We've finally ended our first week on the keto diet. Like most of our family life living with an epileptic, it was a roller coaster ride. We started out on the weekend doing really well. Ben was eating well & we were thrilled. Hot dogs & carrots were a big hit. He didn't seem to mind all of the fat & the butter was going down & staying down. Our first rough day came on Tues.We had finished the last of the ketogenic eggnog so I gave Ben a small bit of scrambled egg for breakfast. He threw a fit, wouldn't stop whining & absolutely refused to eat it. We were late for therapy that morning, so I pitched the breakfast & out the door we went. Ben had nothing but butter & cream to eat. He's in camp this week from 10-12pm so I took a snack. Battle #2 came with the snack. I baked a ketogenic version of peanut butter muffins the night before & brought some with me. Ben took one bite & refused to eat any more. Luckily I brought another snack (peanut butter balls) with me. He loves them & ate it without complaint. I just ignore the fact that he had taken a bite of the other snack. Back at home for lunch I tried the hamburger meal. Ben seemed to be getting tired of the hot dogs (he started whining about the last few bites) so I thought we'd try hamburgers. Well that didn't go over very well. Unfortunately the rules of the diet are such that you can't start one meal, eat part of it & switch to something else. The whole meal is balanced & every part of the meal must be eaten in it's entirety to maintain the keto ratio of 4:1 (4 parts fat to 1 part protein & carb combined). Ben ate the salad & carrots & then refused the hamburger. He would let me put it in his mouth but then refused to swallow it. It was amazing in that he never tried to spit anything out. I think he knows that's not ok. He just wouldn't swallow anything. He sat there with his cheeks stuffed with hamburger & drool coming out the sides of his mouth. If it weren't so stressful, it would've been funny (even if it was a little disgusting). After 45mins I finally managed to get him to choke everything down.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
Wens & Thursday passed with relative ease. And then again on Friday Ben had some issues with the meals I'm serving. Since scrambled eggs didn't work so well, and he really likes the mayo, I tried the yolk of a hard boiled egg with some mayo, again another "food fight". This time Grace joined in b/c she was at the table while Ben was eating & she was honked off b/c she wanted his egg plus string cheese which we were out of. So both were pitching a fit, one refusing food the other wanting more food. Breakfast lasted so long we totally missed morning snack & were in danger of running right into lunch (Ironically I still hadn't had breakfast myself). When dinner rolled around, I thought we'd tried diced ham, similar to hot dogs right? Well, Ben didn't think so, so we had another stand off. Luckily Ted came home by then & took over the battle. I just can't wait till we try chicken & mashed turnips next week!
I'm trying not to push Ben too much with diet changes but at the same time, we've learned from his feeding therapy that if I let him eat the same food over & over, he'll eventually drop that food & not ever eat it again. So I'm trying to preserve the hot dog (feeble pun intended). He has been eating some of the foods easily & it's really nice to see. Jello with whipped cream, keto yogurt & shredded iceberg lettuce with mayo are all new favorites. We never thought we'd see him eat some of this stuff. So we're grateful for the food he is eating.
Ben is definitely feeling hungry most of the time, even when he eats his full meal. The portions are very small & he's only been allotted 800cal/day. In the past few days he's suddenly become very aware of what everyone else is having to eat & he's taken to surfing the kitchen counter. Luckily we're been very good about keeping it clear of food. I think we may soon be putting a childproof lock on the refrig. Wens am Ben got up at 6am, came upstairs and asked for "breakfast". We we're impressed by the use of his new word. Hunger must be a very strong motivating factor. Sometimes I feel guilty depriving him, but I try to keep in mind what a gift it will be if he can come off medication & can live a life without seizures
The dietitian has told us that his hunger will subside after a week or 2 on the diet. He'll never feel full but he won't feel hungry either. Anyone who's dieted can relate. You eat that weight watchers dinner & think, "well that was good, but now what". In fact Ben has taken to whining little bit at the end of his meals I think b/c he's done and he knows there's no more food till the next snack. The good news is, with 3 meals & 2 snacks a day, during the day,food is never more that 2-3 hrs away.
I do plan on asking the dietitian for an increase in calories, especially before Ben goes back to pre-school. I think he'll need the extra energy.
The best news overall is that we've kept Ben's ketones in the Large to X-large range & he's remained seizure free since the first day of his diet (7/9). In fact his last "big seizure was on 7/2. The really interesting thing is that not only has Ben been seizure free since starting the diet but there is something about him that seems more solid & more focused. I can't quite explain it but others have noticed it as well. If he continues to remain seizure free, we'll start weaning one his medications in a another week. A very good thing and a major motivation.
e premte, 13 korrik 2007
There's no place like home...There's no place like home...
We finally made it home. YEAH! We got into town about 7:30 am this morning & after picking up some keto friendly groceries for Ben, we got to the house by 8:30. It was so wonderful to get back home. We've been so lucky to have Carrie & her mom staying at the house. It was such a relief to know that someone was at the house & that we didn't need to worry about things while we were gone. Carrie & her mom really out did themselves and had the whole house spic & span (way cleaner than I left it for them) and they left flowers & gifts for each of us. What a lovely homecoming. And I was already feeling a little guilty about coming home so unexpected & so early. We hadn't planned on coming in till dinner time on Friday but it's been up & down since Ben's first meal on Wens night so we just wanted to get home. After we picked up Grace at my parents place in Deep creek, we just took a quick nap & then hit the road by midnight & drove straight through the night
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
Ben's had intermittent vomiting & flushing of his face & limbs. He is also at times fairly irritable & is not drinking enough between meals. So of course he's still really wiped out. He likes the ketogenic eggnog but the heavy fat in the diet really upsets his stomach. Since wens night Ben has only been able to eat 2 meals & keep it down. The folks at JHU told us that all of this is to be expected. It's really hard for the body to switch from glucose metabolism to fat. They promise that he'll get used to it within the next week. Ben has been asking for his favorite foods (all not allowed on the diet) and when we tell him no, he refuses any other food. The JHU folks tell us that this too will change over the next week, he's just testing the ground rules. We'll see what happens. After only a few days on the diet, Ben already seems more calm & focused & I know he's been using more novel words & more sentences.
I'm just determined that we'll quit this diet only b/c it's not working for Ben, not b/c he won't eat it. Especaiily now that we know it's worked so well for other kids with his type of epilepsy.
I spent 3 hrs this evening making keto snacks, keto yogurt, and freezing butter. None of the recipes were difficult just a little time consuming. With a little practice I hope all the weighing & measuring will become second nature.
Thanks again for all your support, it means alot. Keep in touch.
-Meg
e martë, 10 korrik 2007
End of Day Two
We've made it thorough day two. Ben is doing really well but remains very tired. He has now had a total of 4 very small keto eggnogs and a small amount of no cal, no carb liquids. That's been it since Sunday night. He has +4 (large amt) of ketones in his urine and his blood sugar has been hanging around in the 70's. Which, believe it or not is where we want him. We are basically rewiring him to use fat / ketones as an energy source instead of carbs/sugar So you can see why he's wiped out.
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
We had a bit of a shock. As Ted mentioned earlier, the Drs here think Ben has Doose syndrome (see link in previous email). We came here for the diet & never expected to get a diagnosis too. It's overwhelming especially since we never had one in all these years. Equally impressive is that both admitting Dr's mentioned it as soon as they saw him & his chart. (this occurred at 2 different places in the hospital & 2 different times of the day!). Amazing considering Ben has been followed by neurologists in Raleigh & at Duke for 4 yrs & no one ever mentioned Doose. It's a rare form of epilepsy but the good news is that the ketogenic diet is highly effective for treatment. In fact success on the keto diet can be used as a differential diagnosis.
Everyone here has been wonderful and we're so lucky to have my sister Sue with us to help out. She stays with Ben when we go to classes. She has been a HUGE help. We're in a semi-private room, which I was dreading but our roommates are another couple just like us. The mom is a nurse, dad is a hands on dad(in fact he stays every night) & they have a 4yr old son who was diagnosed with Doose last year. What could be better. They're great & we're learning a lot from each other. Of course as things happen, they were transferred to another room on another floor to make room for another little boy who came in this morning. No one was happy about it, including the Drs . The new folks are great, but they have a little boy who is eating, and he's on a no fat diet, without calorie restrictions. So just the opposite of us & not a great fit. They are only here for 24 hrs & will go home tomorrow afternoon. Then we'll get our old buddies back.
When we're at home, I often feel isolated b/c of Ben's condition. Almost all the parents I know have healthy, "on targetl" kids. They don't live with the daily impact of frequent Dr's visits, multiple therapy sessions & lots & lots of meds. And the parents that I do know who have special needs children, are not dealing with epilepsy. So their issues are not the same. Coming here to meet 3 other families who have had almost the exact same journey, the same struggles & same concerns, has been very, very therapeutic. I almost feel as if I've joined my first parenting club. My first "mommy's morning out", where I really feel connected with the others in the group. Another benefit from our hospital stay, is that no matter how bad I feel for Ben, or how sorry I feel for anything Ted & Grace & I have to deal with as a family, every time we come into a hospital, I see folks who are dealing with so much more. You'd think you'd be emotionally drained and exhausted, and we are tired, but surprisingly we also realize how lucky & blessed we are.
Tomorrow, more classes & keto eggnog & by dinner time Ben will finally get solid food. YEAH! It's a small amount of food but a very big deal.
Please keep us in your thoughts & prayers,
We miss you all and we hope you & yours are doing well.
-Meg
e hënë, 9 korrik 2007
End of Day one
Day one has been joyfully uneventfull. Ben's 24 hour fast was not much of a problem, and he ate the egg and oil milkshake around dinner time without too much fuss -- though with "assistance" from Meg. Classes start tomorrow morning. I'm sure Meg will do fine, but I expect to struggle a bit. I'll be the one saying "explain that to me as if I'm a computer geek." :-)
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
The conversations with the staff have gone really well. It appears they are all very accessible via phone and email, which will come in handy over the next few months.
There is some thought that Ben's epilepsy is Myoclonic-Astatic Epilepsy, or "Droose syndrome" (http://www.doosesyndrome.com/index.html), but that's a preliminary thought. One of the other patients is a 3.5 year old boy with Droose, and there are many similarities. The good news is that this type of epilepsy responds well to the Ketogenic diet. More on that as we learn more.
That's all from me. Till next time, Shalom
e diel, 8 korrik 2007
We're here.....finally
We're now settled into the Baltimore Radisson. It's a beautiful hotel just a couple of blocks from the Inner Harbor & a few minutes from JHU. Everyone has been really great so far and they're very accommodating to JHU patients. We've already seen a few patients in the lobby & cafe. We're in a little bit of sticker shock (no public parking only valet & we tipped 3 times before we even got to the room) But they do offer deep discounted rates to JHU patients (our room reservation was made by the hospital) & we're staying on the Plaza Club floor which takes a pass key to get to it & we have complimentary morning breakfast & afternoon cocktails & appetizers. So I think JHU hooked us up. It would be really grand if we only didn't have that whole hospital thing to deal with!
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
Ben did really well on his trip down but he didn't eat anything all day except for graham crackers sticks. So, we took him to dinner downstairs @ 9:30pm. I'm sure it was later than the Dr's would like but I just wanted him to have something a little more substantial than crackers before his 2 day fast. His last "regular" meal was grilled cheese & fries. He really only ate a couple bites so I don't feel so guilty feeding him so late. He kept asking for crackers & Ted told him he could have them later on. He didn't tell him he may have to wait two years for them!
Knowing Ben, he'll remember & ask again in two years!
I really want to thank everyone who helped out on our vacation. My family really tried to make sure we all had a great time & I have to say it was a wonderful week. Every helped out so we got to do all the things we wanted to do & also chill out when we wanted to. Some of my family came to visit us,so we didn't have to get back in the car & drive to see everyone. My parent's next door neighbors, the Egans, were also really sweet & lent us the use of their townhouse so we had plenty of elbow room for the whole gang. It was really a great week together with everyone.
I'm still really grateful to my family for their help. My sister Ann took Grace home with her for the week. I miss her already but I know she's having a great time b/c her older cousin Emily dotes on her. My mom went with Ann to help her out since Ann recently had foot surgery (I can't believe she took Grace, she insisted it was no big thing. She now has 3 kids under the age of 11 @ her house & she has her foot in a splint!) My oldest sister Sue took time off to come with us. We have daily classes to learn about the diet and Sue will stay with Ben to keep him company. She's already been a huge help to me with packing, directions, & planning, etc. She's also really helped to keep me calm & add a little bit of fun to this trip. Ted & I will alternate staying with Ben overnight in the hospital. Whoever has "the night off" will get to do a little sight seeing with Sue. It'll be a big help to break up the day & decrease the stress.
I'll try to update the blog as often as possible. Please keep us in your prayers. We miss you & can't wait to get back home.
Love to all,Meg
e mërkurë, 4 korrik 2007
More please.....
First of all, happy 4th of July to everyone. We hope you are all healthy & happy and enjoying the holiday. The McDaniel clan arrived safely at Deep Creek, Md on Saturday. We've had a wonderful time so far. The weather has been sunny and cool (high 70's) and we're loving it. We've done a lot of hiking at the local state parks (Swallow Falls). My Aunt Dee, Cousin Richie & Richie's son Max came down for a visit & we went exploring & swimming at the local nature center. Actually, swimming isn't the word. Ben & Grace fell in while walking along the waters edge. We didn't have extra clothes so we dressed them in their jackets. (see pics on the link at the left). We've also been reading & napping a lot too which is a rare teat.
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
Our family is coming in this afternoon to have a BBQ for the fourth & watch the fireworks over the lake. It's always a beautiful site to see them reflect over the water. Tomorrow we're renting a pontoon boat (or a "party boat" as the locals call it) to go out on the Lake. Lots of jumping off the back of the boat & floating. A great way to spend a day in July
The kids have been having a lot of fun. Ben is sleeping on a sleeping bag in the same room with Grace & they really enjoy it. Ted & I often hear them talking to each other but they don't come out of the room & eventually fall asleep without us having to intervene. Ben's favorite thing about sleeping on the floor is that in the morning he can come over and wake up mom & dad, usually between 6-7am! We get to nap but not to sleep in.
Ben did have a seizure on Monday but it resolved with just one dose of Diastat. He was still off the rest of the evening but was his usually self by the next morning. The most amazing thing is that he's eating everything in site. Not only quantity but variety. Watermelon, cheese, hot dogs, carrots, blueberries. He's eating so much he's actually asking for more when we're putting him to bed. This is amazing for a kid who spent a year going to feeding therapy once a week. I really enjoying watching him eat. Sometimes when he thinks it's really good, he hums as he eats! I think he got that from Grace. My big hope is that he will stay as open minded to the new & different food options on the diet and that we'll find something that he likes just as much. But, for now we're just enjoying the moment. I think tonight after fireworks, we'll get some ice cream from the local creamery, YUM!
e premte, 29 qershor 2007
Just one more thing before you go....
Well, we're finally packed up & ready to go. The van is so stuffed,if the load shifts I know we'll turn over. I'm going have to keep my eyes peeled for all the runaway truck roads, we may need them.
Our week did not end without it's crisis. On wens, 1/2 an hour before I was to go to work, the clinical director called to say our insurance "Cigna" denied Ben's admission b/c "he wasn't sick enough". WHAT! She said I needed additional paperwork from Dr Wooten (Ben's neurologist) and I had to get it that day( apparently they wanted a precise description and total count of all his different seizures. They also wanted a physician's note. I guess even if Wooten says he needs the diet, they want to determine if he needs the diet. So I called everyone. Dr Wooten is out of town until Monday & his nurse praticioner was leaving to go to the airport. The secretary was really helpful, but ironically the clinic nurse was the one who gave me the hardest time. A lot of sighing & "well we definitely can't do this today, maybe by Monday". I told her that I was sorry for the last minute request but I really didn't cause the problem & could she just please help me out. She said "I'll see what I can do" but her tone told me that she wasn't going to do anything. Luckily I was able to get Ben's last neuro clinic note from Duke & they faxed it to JHU. Case closed right?.......Wrong!
Then today (Friday, I got another call from the clinic director stating that she got the fax & it looked good but that we are out of network & that the coverage is 60/40.I can't believe it, less than 18hrs to go before departure & we're having paperwork problems. It's like we're living in the new Michale Moore movie.
Middleclass folks just can't get a break.
Anyway, this time I called Cigna myself. No more relayed info. Turns out Cigna doesn't even have the written request for pre-approval. And they confirmed that JHU & it's Drs are all in network. PHEW! So, if it looks like it wasn't Cigna's fault (at least not this time). We just need JHU to submit the pre-spproval paperwork & I guess we're good to go . what worries me is that it seems like the JHU insurance people are confused by Ben's admission. I just know that we're going to get some crazy astronomically high bill about 2 weeks after we get home. Oh well, take one day at a time& we'll deal with it when it happens.
Now that we're almost there I'm getting a little nervous & anxious. I'm excited to go but I'm scared to death that the diet won't help or we can't get Ben to eat it.
What's there to do but try.
Well, wish us luck. We pull out in the morning. I'll keep posting as often to keep everyone updated. We'll be home in 2 weeks. Keep in touch.
-Meg
Our week did not end without it's crisis. On wens, 1/2 an hour before I was to go to work, the clinical director called to say our insurance "Cigna" denied Ben's admission b/c "he wasn't sick enough". WHAT! She said I needed additional paperwork from Dr Wooten (Ben's neurologist) and I had to get it that day( apparently they wanted a precise description and total count of all his different seizures. They also wanted a physician's note. I guess even if Wooten says he needs the diet, they want to determine if he needs the diet. So I called everyone. Dr Wooten is out of town until Monday & his nurse praticioner was leaving to go to the airport. The secretary was really helpful, but ironically the clinic nurse was the one who gave me the hardest time. A lot of sighing & "well we definitely can't do this today, maybe by Monday". I told her that I was sorry for the last minute request but I really didn't cause the problem & could she just please help me out. She said "I'll see what I can do" but her tone told me that she wasn't going to do anything. Luckily I was able to get Ben's last neuro clinic note from Duke & they faxed it to JHU. Case closed right?.......Wrong!
Then today (Friday, I got another call from the clinic director stating that she got the fax & it looked good but that we are out of network & that the coverage is 60/40.I can't believe it, less than 18hrs to go before departure & we're having paperwork problems. It's like we're living in the new Michale Moore movie.
Middleclass folks just can't get a break.
Anyway, this time I called Cigna myself. No more relayed info. Turns out Cigna doesn't even have the written request for pre-approval. And they confirmed that JHU & it's Drs are all in network. PHEW! So, if it looks like it wasn't Cigna's fault (at least not this time). We just need JHU to submit the pre-spproval paperwork & I guess we're good to go . what worries me is that it seems like the JHU insurance people are confused by Ben's admission. I just know that we're going to get some crazy astronomically high bill about 2 weeks after we get home. Oh well, take one day at a time& we'll deal with it when it happens.
Now that we're almost there I'm getting a little nervous & anxious. I'm excited to go but I'm scared to death that the diet won't help or we can't get Ben to eat it.
What's there to do but try.
Well, wish us luck. We pull out in the morning. I'll keep posting as often to keep everyone updated. We'll be home in 2 weeks. Keep in touch.
-Meg
e martë, 26 qershor 2007
Take the good with the bad....
Today was another roller coaster ride in the McDaniel household. It started @ 7:30 with everyone getting up & ready to go in for Ben's pre-admission labs for JH. Ben had to be fasting so we woke him up last,put Emla cream on both arms to numb him up for the lab draw,collected a urine sample, put it on ice (there's no way I can get him to pee on demand in the lab,so I catch the first morning sample)& headed out the door.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
The whole way there Ben kept asking for juice, then crackers (meaning his favorite cinnamon graham cracker sticks). This then got Grace asking for the same. I didn't give any to Grace b/c I didn't want to upset Ben. We got the appt by 9:03 (our appt was for 9am so this was on time for the McDaniel clan). we weren't seen until 9:40, the whole time I was in the waiting room, both kids were asking for food &/or trying to play with the other kids (the waiting area was packed).I am trying to keep Ben healthy before the admission & he already has a head cold so I was trying to minimize playtime with other sick kids in the waiting area. Once we finally were shown back to the lab area, I met a new phlebotomist (this was her first week) who asked me what labs I needed to have drawn & then proceeded to look then up them up in a lab processing manual. this was despite the fact that I had already faxed the request to the lab 2 weeks ago & just last week met with Ben's pediatrician & gave her a copy of the lab request. I handed the lady another copy of the lab request (I came prepared for this question). I explained to the new lady that I was concerned b/c Ben was fasting & that I had a urine sample in my bag which was now over an hour old. She then immediately looked at me and asked if Ben had eaten anything this morning and did I think he could pee in a cup b/c "we need a urine sample".
I knew then that things were going to get worse.
I tried to keep my cool b/c I really like the lab staff & they've always been great before. To sum it up it took 2 phlebotomists and 3 sticks to get the labs drawn. We left at 10:40. Unfortunately, when we got home the lab called to say they had a really weird result, probably from a clot & that meant we needed to do the lab again. I'm grateful that at least the lab result wasn't sent b/c I don't want anything to jeopardize our admission. So, I'm glad they called to ask for a repeat.
Things calmed down after that, everyone had lunch & a nap (well mom only had lunch). Then in the late afternoon, just to break up the monotony of 2hrs of peace & quiet. Emma our dog had a couple seizures in a row (some of you may know that our dog started having facial paralysis & seizures in April. I guess she thought she wasn't getting enough attention & saw how the seizures worked for Ben so she thought she'd give it a try!).
Once Emma settled & Ted got home, we went swimming. We had a great time. The water was clear & warm. Grace & Ben are both doing really well swimming. Grace is fearless & thinks she can swim. She actually kicks her legs & doggy-paddles with her arms (which I think is amazing for a 22 month old) but she sinks like a stone if you don't hold her up. Ben is cautious swimming but has gotten a lot better this year with a swim vest his Aunt Ann gave us. He loves to swim "on his own". Which means about 3-6 inches away.
Anyway, all was well for about 2 hrs & then when we came in Ben had a very long, very weird complex partial seizure. He came out of it with only one dose of Diastat but he was really slow to recover. It was almost as if he kept going back into a seizure. But the whole time he was seizing, he kept looking around & his eyes were open, with normal breathing so it was very hard to tell. This was his first big seizure in 3 1/2 weeks which is the longest we've gone all year. So we were expecting one. Ultimately, he recovered well & we all had some graham crackers & milk before he went to bed.
Speaking of which, Ben is now sleeping in his crib converted to a toddler bed. He thinks this is very cool. He sometimes gets up in the middle of the night to turn on his fish lamp & every now & then we can hear him playing with his shoes which hang on the back of the door (don't ask me why). But overall, he's really been good about going to bed & going to sleep. He has also been taking naps in a roll out sleeping bag (borrowed from his friend Philip)which we'll use on our vacation. He's really liking both of them. It's so funny to see him come walking out of his room after a nap and say "morning" (even in the afternoon) with a big grin on his face. He thinks he's a big man.
We had a lovely day this past Saturday when our friends from church came over for a pool party. It was the end of a week of vacation bible school & we had everyone over to swim. It was so much fun to spend time with everyone. The kids were hysterical jumping off the diving board & it was so funny & sweet to see Ginny Chorley sitting in the pool with all her clothes on (we had more little ones then big people in the shallow end & she jumped in, literally, to help out). Our church friends have been so kind & supportive, we're so glad we've found such a wonderful church family.
Actually I have to say that Ted and I have always been blessed with loving supportive people in our lives. Whether it's been from family members, church family, friends or coworkers. We've turned to the people in our lives over & over again & they have always been there to help us. Often they're there before we even know we need them. As we've been getting ready for our trip north, I have been overwhelmed by the amount of the help we been given, all kinds of help. Offers to take care of Grace, advice on directions & where to stay, offers of a family home to stay in from friends in both MD & Delaware,offers to take care of Emma,generous financial help,a friend mailed us her gram scale that she used when her son was on the diet, my mom & dad cleaned almost the entire house on their last visit, even the offer to come with us from someone who has a very busy personal & professional schedule of her own.
I am so grateful for the loving, supportive & generous people we know. It's b/c of their help we've managed to come this far, and also because of them that I know we'll be able to get through the next part of our journey. You learn to take the good with the bad. To make big celebrations over little moments and to turn to the good people in your life when you need them.
e hënë, 18 qershor 2007
Ben's Birthday
We celebrated Ben's 4th birthday yesterday. We had a bunch of friends & family over for a pool party & did a "finding Nemo" theme (it seemed appropriate for a pool party). The weather was beautiful & we all had a wonderful time. Ben still wears a vest when he swims but this year he's swimming better than ever, He's very confident & swims all over the pool ( of course we always watch him like a hawk & stay close). He's so funny b/c he loves "jumping" off the steps into the pool. He does this great big build up & then sort of slides into the pool instead of jumping. He thinks he's Greg Louganis & we always make a big fuss.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
Ben always loves cake & candles & singing but this year I think he really understood that everyone was singing for him. He was so cute b/c he had this huge grin but was also kind of shy. It was also the first time he really got into blowing out the candles. It was really sweet & lots of fun to watch.
Hopefully, if the diet works, it'll be a long time before he can have cake & ice cream again. So I'm so glad we had a big party. And I'm so glad we had so many loving friends & family to celebrate with us. I posted a link to pics from the party (actually Ted did it, I couldn't make it work!)
Hope you enjoy them.
e martë, 12 qershor 2007
Ben's story
This blog has been set up for our son Benjamin McDaniel. Ben was diagnosed with multi-focal epilepsy when he was 9 months old. He has suffered a variety of seizures ever since and they have increased in frequency. Yesterday he turned 4 yrs old.These past few years have been an emotional roller coaster ride complete with ambulance rides, hospitalizations, buckets of medications & hours of therapy.
Through it all we've had many people helping us on our journey. Amazing physicians & specialists, dedicated & supportive therapists & teachers,loving friends & family. In a few weeks the next step in our journey takes us to Johns Hopkins Hospital for admission into their ketogenic diet program. This will require a week long in-patient stay. We set up this blog so that everyone who cares about Ben can check on him while he's in the hospital. We'll update the blog daily, if possible. We value all of the love, prayers & support from the wonderful people who are a part of Ben's life. We look forward to hearing from you all & appreciate your continued, love, support & prayers.
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