Zonegran

Tuesday Naomi took her first dose of Zonegran at 6:45 a.m.

Wednesday she woke at 4:30 a.m. ready to go! Took her second dose at 6:45 a.m. I had to phyicially hold her down in my bed and make her take a nap at 12:45. She slept one hour.

Today is Thursday and again, woke at 4:30 a.m.

Calling today to report that sleeplessness is probably a side effect for her (and me).

Keppra Wean

Well Naomi had her last Keppra dosage at 8 p.m. June 21 and so far so good.

She woke up Monday the 22 and had a pretty good sized cluster, before her dose was due, and I just thought "To heck with it!". It had been a week since I dropped her dosage and the Dr. had said every one to two weeks so I just took that out of the equation. If she's gonna cluster on or off the medication I'd rather be with out it.

Well she has been fighting teething for the last week. Her ketones dropped significantly for a full week with nothing done differently on our part. Then this morning they were back up again. So hopefully she's out of the woods with the teeth.

She's been having less than 20 myoclonic seizures in a day. Those are really light too. The other day Bill asked me how she was after her nap and I said "she had 4 but I really had to look for them". Another thing is they seem to be affecting mostly her legs. So it's just her feet turning in that tips me off she's had a seizure. Sometimes she doesn't move at all she just kind of rolls her eyes and you can hear it like it's contracted her diaphragm and pushed air out. Once in a while they'll make her fall. She just did that. She wasn't expecting it and her head dropped slightly and she stumbled backwards and couldn't catch her balance and fell on her bottom. But that's it. I can live with that.

So good days for a while now and we're feeling a little more comfortable and are going to leave Monday for a vacation. Don't tell Isaiah or I'll hear "when we going to Austin's" every 5 minutes until we pull out of the drive!

GULP!!!!

Naomi's state insurance (BCMH) which acts like a 2nd insurance for us ran out as of Jan 31. I sent in all the paperwork in early November. I got it back to them as soon as I could! There may have been a 2 week period between me receiving their package and me sending in all necessary paperwork.
I called to see what the hold up was in mid January. I talked to our local county health nurse who's over the program in our area. She doesn't do any of the paper work she can just inform me what is going on in Columbus where everything is done. When I told her Jan. 31 was when coverage ran out she joked that if they had until the 31st they'd surely not hurry to get to it, but since I got my stuff in so early they usually try to help those who don't wait until the last minute and they'd probably get to it soon.
Well it's March now and I still don't have any paper or coverage from them. I did call directly to Columbus about a week ago to see what was happening and they gave me all the dates everything was received and said everything was put on the nurses desk for review on February 2nd. Nothing has changed since the last time we went through this so I don't know what the hold up is! It is so frustrating!
Today I went to pick up her Keppra prescription. Usually I don't pay a dime for it because BCMH pays for it. Well I paid a pretty penny for it today! $80!(that's the price AFTER insurance has paid it's part!) As the prescription is written that is a 20 day supply! See why I titled this GULP? Thankfully we have decreased the Keppra and now that's a 30 day supply!
I'm so thankful for BCMH! It's need based not income based which is great that there's finally something out there for working families. I just wish they'd push the needed paperwork on through so Naomi can have coverage again!

All done for 2 days now

The 10th was the first day with NO Topamax. So far so good. She does have a little rash on her upper chest, may just be heat because she just woke, doesn't look menacing. I'd think the rash that can come with Topamax would have hit when she was at a high dose if it was going to come at all. Other than that things are about normal. At least no worse than when she was on Topamax and better in some ways. Today she woke at 6 a.m and didn't have one seizure. That's the first time she's woke from an over night sleep without any seizures in recent memory. She did lay down for a nap at 9:20 and woke at 10:40 and of course had a 10 minute cluster of 54 seizures. But at least we had a good morning.

Almost done with Topamax

Today we're going to 15mg in a.m. and p.m. So she should be done with this in the next couple days. She's still having daily seizures, but still no worse than when she was at the highest dosage. She's had a really good day, then she'll have a bad day. There's no rhyme nor reason to it! When she was on Topamax at higher levels she was less vocal, and when she'd get frustrated she'd bite her hands, HARD! She didn't seem to feel it. The Dr. said it's possible she didn't . People report numbness in hands and feet. Also one parent we met in the PMU said that their son was on it and put his hand on a hot stove and didn't feel a thing. She also had loose stool (like peanut butter). Yesterday was the first really formed b.m. I can remember in a long time. I also used to see little black specks in her b.m. I'm not seeing that anymore. Other than that I can't really think of anything else. I'll probably think of something later!

Odd day

We're still at 30 mg of Topamax twice a day but this morning when she woke up I waited and nothing happened then finally I saw one. Over the next hour I saw a total of 3. She had therapy this a.m and when we got to the office she had 1 then her Physical Therapist saw 4 in the half hour they were together. Her OT and ST therapist saw nothing. She took a long nap when we got home and I figured when she woke up then she'd have a big cluster, but NO, just 1 little seizure. She's been up an hour now and ate lunch and still she's fine. She's wanting to be near me and seems calmer also.

Depakote Spr

My daughter took Depakote from about Feb 1- May 22. It never worked for us. Our Dr. said if she was still in Europe it would have been her 1st choice but here they like to go with Keppra first because it has much less side effects than other meds. Dr T also likes to use Depakote Sprinkles with the younger kids because it goes into their bloodstream at a much steadier rate (that's how I understood it anyway). Though I know they can give Depakote (not the sprinkles) intravenously to start. Sort of a jump start.
It seemed like the higher the dosage the worse the seizures got. At first it seemed like maybe they worked a little and might have made her focus a little more but every time her dosage went up eventually the seizures would get stronger. She also started looking out of the corner of her eyes like she couldn't focus. I took her to the eye Dr. and he said it could be the medicine. It must have been the meds because she stopped after she got off Depakote. It made her tremble, but she trembled along with her seizures and no other time, like a really really strong cold chill. She may have had more spells where she got angry or frustrated. She never had a seizure free day. As soon as we started decreasing the Depakote the seizures seemed better, we were introducing Topamax then too, so I'd hope her seizures would seem better she had 3 meds in her system. She didn't pick up any new words during this time, just seemed to be at a stand still. She picked up on physical things, climbing stairs etc... but no verbal. Also when she would seizure on Depakote I could watch her eyes dilate rapidly and when they'd get to a certain point BOOM there's go a seizure. On other meds I don't notice that or at least it's not so noticeable.
I also want to note again that when Dr T prescribed Depakote she also prescribed Carnitor ( http://www.carnitor.com/ ) or Levocarnitine. It's a nutritional supplement that helps protect the liver. It comes in tablet form you dissolve in water I believe but we got an oral solution. Both have a "fishy" smell. You could smell a dirty diaper from a mile away!!! But I'm sorry to say, once she went off Carnitor, her dirty diapers didn't magically start smelling like roses! I will add here a housekeeping tip: activated charcoal that they use in aquariums and you can buy in the pet dept. at Walmart, works 10,000 times better than baking soda at taking care of diaper pails!

Topamax wean about 2 weeks

Well we're down to 30 mg in a.m. 30 mg in p.m. So far so good. It seems like when we go down a dose, well really just the p.m dose, we may see more seizures than we'd been seen. But nothing worse than when she was on Topamax at full dose. So I don't think there's any trouble with the wean. On the up side she is so much more vocal, smiling all the time and into everything. She's trying to say more words. She just seems like a happier kid.

still weaning

another day of weaning, we're at day 2 of 30 mg in am and 45 in pm. She had 2 very short clusters this morning then she took a nap and woke and nothing. We went to a local festival. Where she rode a horse for the first time, and she fell asleep on the way home. She woke in the car and nothing again. Then she and I later ran on a long errand, she fell asleep in the car again and nothing. If she's had any others today they had to be really light and no muscle movement because we're with her pretty much constantly and haven't really seen anything. It really feels like the lower dose she's on the better it gets.

Topamax wean 1 week and 1 day

I went down another dose today so we're at 30 mg in am 45 mg in pm. Still this morning was fine, she actually only had 10 seizures in two minutes then three minutes went by and she started again, these really pretty light and in three minutes she had 18. Then she was fine until just after 7 a.m and over fifteen minutes I saw her have 6 little seizures while she was playing and walking around. She didn't fall or anything they were all light. So far so good. I think for her sleep is the biggest thing and yesterday she took pretty good naps.

Cut to the present- weaning off Topamax

My daughter is weaning off Topamax. I tried to find out what to expect by Googling the topic but couldn't find anything helpful, that's the reason I started this. So today is 1 week that we have been weaning off Topamax. Dr. T said to go down 15 mg every 3-6 days. When we started she was on a dose of 60 mg in the a.m and 75 mg in the p.m. Today we are at 45mg/a.m. and 45 mg/p.m. It started out really smooth. She was having more seizures but they were extremely mild! She was having "straggler" all day too. But, in the last day or so the "stragglers" are gone she's pretty much strictly just seizing when she wakes. This morning she had 47 in about 10 minutes when she woke, I must say that she would not take a nap yesterday and that may have something to do with today also. Then she had therapy and we were there for 1 1/2 hours and I saw 2 little seizures after she got excited. She fell asleep for 30 minutes in the car and woke and had 40 in 5 minutes and went back to sleep soon and slept 1 1/2 hours she woke and had 40 some more in 5 minutes, they all were light except 10, those she clenched up for a second pretty good and her head dropped fast. This isn't a huge change from what she was doing before. Also her behavior is better. She was biting out of frustration and hasn't bit me once since we started weaning her. Also she's just more "there". It's easier to get her to laugh, she interacts more and makes better eye contact. She's even making more sounds and trying to say more words but there's a way to go until that improves to where it should be. She still loves the word NO! She's beating a drum along with music, which she used to do all the time but I couldn't tell you the last time she'd done that! All in all, after one week, no major change, some seizure activity could be attributed to withdrawal too. So who knows.

So, How did Keppra work out?

Well, Keppra helped... there at the beginning she had a couple seizure free days or at least days I didn't see her seize. But never 2 days straight and that was at a very low dose. We upped her dosage every so often until she got 5 ml twice a day. At one point it did make her seizures predictable. She really only seemed to have seizures right after waking. It was also after starting Keppra that her seizures seemed to cluster. But..... Since it didn't stop the seizures Dr. T wanted to try another drug. Before we did that though they wanted to do an MRI and admit her to the hospital to the Pediatric Monitoring Unit so they could do a video EEG. We did that and may I say the hospital staff was marvelous! Dr T gave us info on 2 different drugs and told us to read about each of them and their side effects and let her know which one we'd feel comfortable with. Our choices were Valproic Acid (Depakote) or Topamax. She came a day later to see what we'd decided. Well, it's all bad and we opted for, what ever she wanted. We figure this is the only child we've seen with seizures, she's seen thousands. So she said she felt Valproic Acid would be best in the form of Depakote Sprinkles. Also she prescribed Carnitor to protect the liver from the Valproic acid. She wanted us to stay at the hospital through the first 3 dosages just to make sure everything was o.k. She told us we should be able to leave Sunday morning. Well then later the nurse came in and said it looks like you're going home tomorrow. So then we got ready to leave, mentally. Then on Saturday a.m the doctor on rounds said "I hear you want to leave" and I told her the nurse said the Dr's orders said we were to leave and she said no it's Sunday and I asked exactly what reaction we were looking for because she'd had her 2nd dose that morning and so far no reaction, so the only reason we'd be there another day was that her 3rd dose would be in the p.m. Well they ended up letting us leave around noon This was day 4 of being there, which in some ways felt like day 40! Although the staff was wonderful and it went better than expected, no one wants to stay in the hospital longer than they have to! Also during our stay we met with Dr P and 2 of his residents. Dr P was to be our "why" doctor. Dr T is the treatment Dr. more about Dr. P another time. So we were leaving on a starting dose of Depakote Sprinkles but still on the Keppra because they didn't want to loose any ground they'd started.

Background

My 2 year old started having daily idiopathic myoclonic-astatic seizures Aug 2007 when she was about 18 months old. She's had excellent medical care yet has failed Keppra, Depakote Sprinkles and Topamax. Currently she takes Keppra, it helped but didn't stop the seizures, and Topamax. We are weaning her off Topamax in preparation for the Ketogenic diet. I just started the weaning process on Thurs. but so far so good. We are waiting for the nutritionist to call to tell us when she'll be admitted to start the diet. We are so happy to be given the chance to at least try the diet. The doctor feels there's a 50/50 chance the diet will work and we should know with in 2 weeks if it works for her. Everything I read says any new med we try will have a max. 10% chance of working. I've decided to start this blog because, we are at the start of this journey and maybe someone else will find our information helpful. For now, her development is delayed. Physically she's grown fine, her motor skills are fine. The child and run, jump, climb and everything else. Her speech is a major concern. She is stuck on the word no, uses it for everything and understands when we say it. She used to say more words but they come and go. Whether that's the seizures or the meds, I don't know. She's delayed in cognitive skills, I can't tell her to go do something and she'll do it. She hears what we're saying but it doesn't seem to register. Sometimes it seems like she does understand what we're telling her but her brain won't let her do what she needs to do.
Sometime I'll post what tests have been done and so forth, because I have total faith in her Dr's and maybe they check something others don't routinely check for. She's had a ton of tests!