Should auld acquaintance be forgot.....

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!