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!
e mërkurë, 31 tetor 2007
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.
Abonohu te:
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