Dancing at home

Naomi, at home dancing and "singing" to The Song off of the Alvin and the Chipmunks Squeakquel CD. She loves it. At the beginning she squints her eyes a few times. She been doing that since December. I don't think it's seizure related so we're going to the eye Dr. at Cleveland Clinic's Cole Eye Institute later this month for a check up.
It's always something!

Zonegran

Tuesday Naomi started 50 mg of Zonegran twice a day. This is the dosage we've been working up to. She's only been on the meds less than 3 weeks, but we've seen nothing. We lowered her calories the same time we started her on the Zonegran so who knows what is what at this point! She isn't falling all the time anymore. Some of her seizures look like dizzy spells, but we've seen this on the diet so it's not enough to make me want to continue with the meds one minute more than I have to. She gets agitated very easy. I tried to pick her up and move her yesterday and she laid down on the floor and had a full on fit! Also, she had been babbling constantly. Ball, bear, making up her own little sentences of "bee bee bee bee ball bee". It felt like she was trying to communicate, but that's gone. We're back to "yea-yah" for about everything. That is really frustrating, because now I wonder if the babbling will come back when the meds are gone or will she have to start fresh with that!

We lowered her calories as I said, so maybe that's helping some. The number of seizures she's having are about the same. They are more spread out and lighter in intensity though, well not all but most. There is no rhyme or reason. Sometimes she'll have stronger seizures in the a.m. and then they lighten up. Sometimes they're lighter in the a.m. then in the evening they get stronger.

She's not wanting to eat at least 1 meal a day. She eventually does eat it, but not in a timely manner. She's been in the other room working on an eggnog drink for breakfast about an hour now. Yesterday it was her 3rd meal she didn't want. Zonegran has a side effect of loss of appetite but we've seen this with the diet also. I just hate having 2 things going on at once.

The Zonegran comes in tablets that I can pull apart and sprinkle the contents in food and give to her. That doesn't work with her though. It's easier just to get her to swallow the whole pill, then you know she's gotten it all. She can spit it out and I can put it right back in her mouth until she swallows it. I've put the whole pill in some sugar free jello and she was taking that well for a while. Now she screams and gags on the jello, so I just let her spit it out and as long as the pills stay in there we're good!

Monday she'll have blood drawn to check her diet related blood work and also the Zonegran level. So hopefully we can talk to the Dr's office and know if we've gotten her to a theraputic level and it's not working, so lets back off!

Good Buy

Have you ever bought something for your little kid and your big kid loves it too?
Why we didn't buy one of these earlier I have NO idea. It has been a life saver. You'd think she'd hate it, but she loves it. We take her out then she turns around and walks right back to it and points in! So what ever, silly child!
I am buying an extension so she'll have even more room. When she seizures in this thing she falls against the sides and just sort of slides down safely. But tomorrow, like it or not, we're having a strap put on her helmet.
P.S. see the end of my new couch? The chair is in the right corner, you can't see it so well.

Dear Diary

I just set up an online diary. Why when I have a blog?
Well, because I signed up on www.my-diary.org and got my own online diary so I can keep track of when I talk to the neurologist office. That is the only thing that will go in there. I'm using it as a log.
When I call them.
When they call me back.
I figure if the nurse doesn't seem to be keeping as good of records as I think she should. I will also keep some records so I know exactly when I called and what was said.
I'm thinking by the way the nurse replied when I said hello, and the quick response I got from her, that our neurologist has had a bit of a talk with her. She said she tried to call me several times last week. On Thursday but she got a busy signal. Well, I told her, we have call waiting. The only possible way that she could have called and gotten a busy signal was if I just happened to be calling out at the exact time she was calling me. I did have our home phone forwarded to my cell phone. But even that has caller I.D. and call waiting.
Oh well, if complaining gets my child pushed to the head of the line, that's fine with me!
I know it's not just me though. I've talked to another mother who was in a very bad situation and information was not carried through with like it should be.
Don't you just hate that you have to turn into a bitch to get things done for your child sometimes!

Adding up Naomi's seizures

I just ordered this off of Amazon.com.
Right now I use index cards and put tic marks on them to keep track of Naomi's seizures. I don't know why I didn't think of ordering one of these earlier!
Yesterday we saw Naomi's neurologist. I wanted a face to face meeting because her seizures are just going down hill. They're very quick and the neurologist feels they're probably doing no real damage to her brain. It's just that she falls with EVERY one of them. The risk is in her falling and hitting something. Right now we're with her constantly or we have her contained so she can't harm herself. We're pushing the Zonegran. The doctor said if we're going to do it lets get it in there and see if it helps. So instead of waiting 1 week to start her on an evening dose we started that last night. So she's on 25 mg twice a day now. She'll go up to 50 mg in the a.m. and 25 in the p.m. next Friday and then I can wait 4 days or so and add in the final 25 mg dosage at night. 50 mg a.m. and p.m. is our goal dosage.
Also the dietian added 100 calories to Naomi's meals on Friday the 8th and I had Naomi weighed the 7th. She was 15.6 KG then. Yesterday at Cleveland she was just over 16 kg. So Tuxhorn said go back to the 1200 calories a day immediately and look into going even lower.
Tuxhorn also felt like maybe the increase we're seeing is age related. Maybe she's moving into a new phase of her epilepsy. Well, I hope that at the end of this down hill road is a finish line. I don't think that's what she was implying but it's certainly what I hope for!
When you check in at Cleveland Clinic neurology they give you a computer to do a survey about quality of life and so forth. The first question is how many seizures has your child had in the last 4 weeks. So I sat there with my calendar and added them up. The total was 770. Then when we went back the girl said "how many seizures has she had in the last 3 months". I told her what the 4 week total was and I guess she figured something out. Lord have mercy! I am not sitting down and adding all that up. I do not even want to know!

Naomi

Well, I just can't take it anymore.

Naomi was put on 1300 calories a day last Friday hoping that would help her seizures. It hasn't.

I got the prescription for Zonegran filled Monday evening and hated to do two changes so close together, but I had to try something else.

So now it's Thursday and for two mornings Naomi has woken at 4:30 a.m. Then only napped about an hour during the day. She didn't go to sleep last night until about 9:30. Tonight I'm taking her up before 8:30 and hoping she'll fall asleep soon.

She's having over 40 seizures a day and it feels like all we do is follow her around waiting for a seizure to happen.

Last night and this morning she didn't seem to have the appetite she has had. I was afraid it was the Zonegran causing loss of appetite. Well, she ate the rest of her meals well, so I guess we're safe there.

I called Cleveland Clinic this morning to ask the nurse about sleeplessness and loss of appetite as side effects. Then the more the day went on the more I decided I wanted to meet with the Dr. face to face. So I called to make an appointment and they can actually get us in tomorrow afternoon!

Normally, my day would be wide open. But don't you know I had a 2:15 appointment to update Naomi's IEP and a 4 o'clock hair appointment with a beautician who is booked for 2-4 weeks out! So I had to cancel both. The hair appointment hurt the worst! :) You know how it is! You finally get to do something for yourself and have to make other plans and push that back.

So tomorrow we'll see her neurologist and see what she says. I've sort of had it with the diet. It just seems no matter what we do we're not getting consistent results. Normally if you fast the child and see positive signs such as lessening of seizures, it means they are getting too many calories. When I fasted Naomi for 24 hours she stayed much the same, even having some stronger ones towards the end of the fast. So then she just kept going down hill. The dietitian added calories. Naomi is active and my one thought about the calories was that most children who are about to turn 4 don't need a daily nap after sleeping 10 hours. But she would. So maybe she didn't have enough energy to get her through the day. Now with these 4:30 a.m. wake ups she's got way too much energy!

Oh, well. I'm not going to ask to stop the diet, but if the doctor suggests it I'll go along with it. Although in all honesty. I would really have a hard time figuring out what to normally feed Naomi! I've weighed her meals and went by her little chicken, vegetable or fruit and cream meals for over a year now and that just seems normal.

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).