what a nice boy

This blog is to be mostly about Naomi and her epilepsy but I must mention her brother. Isaiah is 7 years older than Naomi. He's so nice to her. This morning I put a hooded sweatshirt on her so we could walk him to school and he just kept saying "awwww, mom, look at her, she's SO cute in that isn't she, she's so cute! Look at her" He's good at keeping her happy when we're shopping and yesterday in the car he leaned over towards her and she grabbed his head and was so excited, she just loves him. Her speech is delayed and yesterday she took him a book and I told him to say the word book because she could say it and we were trying to get her to say book. Well he really worked and worked trying to get her to say it, but she's so excited he's interacting with her she missed the point!
I did move a lot of the things she could climb on ,out of the living room. My husband was watching her Saturday morning and trying to clean up the kitchen when he heard something in the dining room and there she was walking around on top of the dining room table. You've really got to keep an eye on her, she's super active!

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!

Because when your up your up and when......

Well she's up all right!!!! Up and climbing on Everything!!!!!!!!!! She climbed onto her Leap Frog table stood straight up on it, then tried to step into her toy box. Then..... she tipped over her little red coupe and climbed up on it and fell butt first into the car. Then..... she climbed up on the little stool where she looks out the window, climbed over the arm of the recliner directly onto the dog. She climbs onto the couch and tries to run from one end to the other. She is a climbing fool. This weekend I'm taking it all out of the living room. She can have it little by little. All she cares about are her books anyhow. Maybe if I put them where she doesn't have ready access she'll learn to ask for them. If I haven't had a heart attack by them!

you got to pay the piper

After a pretty good day yesterday with no real cluster of seizures and fewer than 20 all day, today we had to pay the piper. She had a cluster of 50 when she woke, then seemed tired and around 10 a.m. had another cluster of 30 then fell asleep about 10:30 for a 2 hour nap and woke and had another cluster of about 30. So for now we're over 100 for the day. She did go down another 15 mg. this morning but that shouldn't have affected the 1st cluster. There is just no rhyme or reason to her seizures.

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.