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).

Tained Jewelry

Have you read about the latest jewelry being pulled off store shelves?

More made in China stuff. Kids jewelry containing cadmium.

Well the guy who tests all these things works walking distance from me!

So when he goes to Walmart to buy these things to test, he goes to MY Walmart!

That just brings it all way to close for me!

I'm so glad that Naomi can't ask for stuff like this. That she's not wearing toxic jewelry around her neck. We've got enough issues!

Naomi November to now

Well in November we met with our dietitian and neurologist. Naomi was having about 30 seizures a day then. The dietitian had no recommendations and was pleased with Naomi's growth over the last year. The neurologist wants to try the drug Zonegran on her. She does not want to push the dosage because she feels Naomi is at risk of a sedative effect and that will not help her development. The neurologist wanted to talk to her nurses about how best to administer it to Naomi, since she's on the diet and I can't just go to the fridge and get a spoonful of jelly and mix the meds in that so it'll slide right down her throat. That's the only way I used to be able to get meds in her. Unless they could be crushed and mixed with water.

Well a few weeks went by and I never heard anything and one day the nurse that has taken over for Martin called.

Martin was a saint! He was everything you want in a nurse. He didn't keep you waiting. He's obsessive compulsive with his work. Not only that he'll help you work around the system if that's what it takes. When our Dr. didn't address the carnitine deficiency he told me to contact our metabolic/mitochondrial Dr. and they would get Naomi started on carnitine.

So back to the new girl. She called about some paper work, but then I asked about Zonegran and what was going on with that. She checked the Dr.'s notes from our visit and saw that it had been recommended so she was sending the Dr. a message. Then we never heard anything again. So finally Naomi got sick with that bad stomach bug in December. After the stomach bug she had some glorious days where she had very few seizures and she seemed to be on a streak. The Sunday before Christmas she only had 1 seizure all day long! So December 23 I talked to the nurse and said I'd like the prescription, but want to hold off giving it to Naomi. She was on a streak and I didn't want to tip the apple cart. She talked to the Dr. and got back to me on December 30. The Dr. was fine with holding off. Well, I told her things had changed and Naomi was going downhill and I wanted the prescription. I realized it was a holiday weekend and I was fine with waiting until Monday for a prescription. So Monday came and I contacted Naomi's dietitian and told her Naomi was going downhill and asked about getting a glucometer to see what was going on. She was fine with that and emailed the keto nurse who then emailed the new nurse to see if we could get a prescription for it. Well I never heard anything so Wednesday I just called our pediatrician and had her give me a prescription. I got a meter that tested glucose and ketones. Then I emailed the keto nurse and told her. She emailed me a reply that she'd notify the nurse, the Dr. was on vacation and she'd been waiting for her to get back for approval. Well let me tell you, if that was Martin he would have called and told me that the Dr. was on vacation and if I wanted it to go through our pediatrician. So then on Thursday I get a call from the nurse on my answering machine that she's not sure what is going on. She got a message about a meter, but no one on their end had ordered one. I'd have to go through my primary care physician and she hoped she wasn't getting the message wrong. That she hoped this wasn't about getting a prescription for urine ketone test strips. UGH! I was so aggravated. What I ended up doing was sending an email to someone I know that works near our neurology department and asked what was going on up there! I just wanted to know, should I be worried. What should I do. So the person I know talked to Martin and he said call, call, call. Be persistent and if I feel like messages aren't getting sent correctly to make and appointment and meet with the doctor face to face. Especially if the seizures get worse.

So Thursday morning I was a little pissy when the nurse called. Then she called me back Thursday night. The Dr. was stuck in the suburbs because of a snow storm but she wanted to review Naomi's chart and she'd give us an answer on Friday. The nurse said "I will call you Friday". Well Friday at 3 p.m. I hadn't heard anything. So I called up there and left a message to see what was going on. Finally at 5:10 my phone rang and it was a different nurse from our Dr.'s office and she said the Dr. had reviewed the chart and proceeded to ask where I want the Zonegran called in to. Then gave me a schedule for titration. Shewww! Glad that's over!

But in the mean time!!!! Our dietitian upped Naomi's calories to 1300 a day, which seems like a lot! So Friday night her last meal I gave her the higher calorie meal. Twenty five more calories than her previous meals. It's now Saturday morning and not long after waking at 6, Naomi had a drop seizure. Then we came down stairs and I checked her ketones, which were 3.2. They aim for her to be 4+ when she's on the diet. Her glucose was 72. It was actually higher than that when she was sick and her seizures weren't so bad so I'm not so worried about that. It's now after 8 a.m. and Naomi has hardly went more than 10 minutes with out having some sort of seizure. Myoclonics are what I"m seeing. It's like her ab muscles quit working and she just kind of goes forward then falls back. But, she's very chatty. Saying ball, playing ball, just really present. So we'll see how this goes! I really feel like she fell out of ketosis before right after she was sick. Her breath had that rancid smell they get when they first start the diet, before the ketones kick in. Then the more of her meals the ate the worse she got.

We'll see. Nothing I can do but wait. The pharmacy doesn't carry Zonegran 25 mg, so they have to order it. With the weekend it'll be Monday before they get the shipment. So that means it'll be Tuesday before I can even start it anyway.

Naomi in the fresh snow

First she thought it was GREAT!

Then she had a "wardrobe malfunction"


Then she decided to go head first and start dipping into the snow.


Then we went inside to warm up those cheeks!

Snowy Day

This is out front of my house at 3 p.m. There's a 4 lane road there somewhere.
Today several of the area schools took a look at the radar and decided to release kids at 1 pm.
Not Isaiah's school. He has math club after school and I called to see if it was cancelled. It was not. It is going on as planned. So he's still in school. Thankfully my dad has a Dr appointment in town today at 3:50 so he's picking Isaiah up before he goes to the Dr.

I'm thankful I don't have to bundle up Naomi and take her out. She needs a nap anyway! She is refusing sleep. I've got the electric blanket warming up and it's just waiting for her and I to jump in!

I'm hoping for a snow day tomorrow! I'd like a 3 day weekend as well as Isaiah. Plus it's always rough on the kids going back to school after a long holiday. This will help ease the transition!

I'm wondering if the administration is having second thoughts as they load our precious cargo onto buses and they drive off on unplowed roads?

Medical Mystery Show

Last night we flipped past one of those shows that starts with a person's symptoms and all they went through trying to find a diagnoses. Well this one was a little girl. Her mom would put her to bed every night and about an hour into sleep she'd vomit.

They took her to all sorts of doctors, even an allergist, who gave her something to keep her from vomiting. It worked one night then the vomiting continued and got worse. She started vomiting multiple times a night.

Already by this point I have looked at Bill and simply said "seizures".

So then the woman says her daughter vomited one night and as she cleaned her up she asked if she was alright and the little girl was slurring her words. The mom was scared to death and thought she'd had a stroke.

Again me: "Seizure"

So they take her to the ER and a neurologist sees her they do an ______ come on mother's of epileptics? Can you fill in the blank? Correct! MRI! It came back normal

Then they did ______????? Any guesses???? An EEG! YES!!! Of course. Sounds like some of you have been through this before!

That's pretty much how Bill and I continued watching the show.

They were putting leads on the girls head for the girls EEG and we said "OH! I always wondered how that worked!"
The EEG seemed normal but they wanted to get a record for what happened to her as she slept. So they admitted her and did a video EEG where, as they explained, the child was hooked up to EEG and was video taped simultaneously 24 hours a day.

By this time, they are preaching to the choir! We were not the family to be touting this in front of! We know all about this bit of technology. Naomi has stayed on two occasions in the pediatric monitoring unit going through this exact thing.

They showed the EEG and the video of the child as she vomited. This is where we lost Isaiah.

He can almost vomit on will, but can't deal with others.

The neurologist went on to say that the child had epilepsy and they explained what went on in the brain during a seizure. So they got the child on medication. She said she had to take 14 pills. Then at the end the mother came on and said the child hadn't had a seizure in 3 months.
I looked at Bill and he said "that just pisses me off. Why can they fix that kid and our poor baby still has seizures every day".

It's a sad thing. I hope all kids are seizure free at some point. They sure didn't spend much time explaining that they often don't know why kids have seizures.

More about Naomi later. I'm waiting for instructions from the clinic now.

Priorities

I was talking to a girlfriend this week about cell phones.

I was telling her I saw a mom who looked like her family didn't have much and she brought her child in for therapy. Now this is at 9 a.m. and that boy looked filthy. How can a kid look like he's played outside all day at 9 a.m? Then the mom sits down, pulls out her cell phone, opens it and proceeds to spend the next half an hour watching a television show on her phone!

The phone had to cost some money, but that's a one time expense. So I don't even have internet on my phone! I mean just how connected do we have to be! I actually have a very old plan that I don't want to change because it's cheap. But it doesn't have unlimited texting like newer plans. So I got rid of texting all together. Can't text at all. I know, how do I live right?!

My girlfriend was saying she sees so many people who have rotten teeth and need dental attention and there they go pulling out an I phone! Seriously! Save that money and put it away so you can have something that matters!

Now tax season is coming up and you know there will be a run on new cell phones and big screen tv's! Last year a friend of Isaiah's said they got a new TV. This is a kid who I had given several things to him and his siblings, including socks, because they'd show up here before school and have none. So what do they do with their tax money? New shoes for the kids? Put money away for the laundry mat so they have clean socks? Nope. They pay over $700 for a new TV. Which the kids say they needed because while the old one worked it would get lines across the screen sometimes. OK, replace it, but $700! Get a smaller TV! They lived good for the month of January but by mid February they were broke, again.

This terrible economy that we are going through is rough. But I really hope it has made an adjustment in peoples spending and they will think twice before they go out and spend hundreds on a new phone or tv, and not have money for their kids lunches.

Resolution

I never make a resolution. So, I never break my resolution.
But this year my New Years resolution is to read this book.


I chose this particular book simply because it's available at my local library. Then I realized there was a movie and could have just watched that!
I know myself too well though. If I like this book. I will read anything and everything I can on the subject and then watch any movie. I've done it before with Thomas Jefferson and the Romanov's.
The reason I want to read about Gandhi has to do with religion. Not that I'm converting or anything. Just that I have issues. I know I'm Christian and I do accept Jesus and my savior. But where I waver is that unless you accept Jesus you can't get into heaven. First on my list is Gandhi. I can not believe that with the life he led God would leave him out in the cold. You know all those WWJD bracelets? This seems to be a man that didn't have to ask that. He did the right thing. Not that he was perfect, just more perfect than others who seem to think their place in heaven is set.
On the ketogenic support group there was family that lost their son in November. They were Buddhist and while they took his death hard they also accepted it rather quickly and went about trying to repay the kindness shown to their son. I'm sorry, but I say hurrah for finding peace so quickly. How ever it was. I see God in that. I think God sent them what ever they needed by what ever methods.
This also reminds me that once I read something and a person said "if there is a God why are there crippled children". The answer given was to teach us compassion. Well, I think that goes for many things that are seen as sinful or wrong. I think everyone is sent into our life to teach us something. Whether it's compassion, empathy, patience, persistence or unconditional love.
We had a visiting speaker when our pastor was on vacation. Quite frankly, I didn't like his message at all! He worked at a local college which is VERY liberal. It was the first in the country to admit women and blacks. Well, he kept saying that even there, God was present. Like all the kids going there were heathens and came from heathen homes. They had a small group of Christians that would go out of campus and try to get people to talk about their beliefs. What really turned me off was when he talked about one person who was part of the group who when he came "thought" he was a Christian, but in talking to him they found out he wasn't "really" Christian. If I was that kids parents, and I raised him Christian in the beliefs of our family and such, I would be MAD! I would actually be irate and scared that he'd entered a cult! To me you should not go out and try to reel people in by bum rushing them in the quad! You should live your life as an example that others want to emulate. They should want to have what you have. Do good for others, that kind of thing. If they start talking to you and ask you questions, by all means answer them and an invitaion to church never hurt anyone. But don't chastise them as sinners when they don't show up!

So I want to read up on this Gandhi and know more about his life and what he accomplished and how. Maybe I'll find out he doesn't give a hoot if he got into heaven or not.