UGH

Well Naomi had therapy today. She had 4 seizures while she was with the Speech and PT who see her together on Tuesdays. She was tired today, and hopefully will take a nap soon! Her appointment on Tuesday is 8:30, bright eyed and bushy tailed! Not so much!
Four is about what she usually has for that first 1/2 hour then she goes to OT and is better, having 0-1. Today however after one of the seizures the speech therapist noticed that her smile was lopsided for a brief time afterwards. I've heard of Todd's paralysis but we've never seen it in Naomi. I'm thinking that's exactly what this was. So now I'm watching her closely and after her seizures making sure that everything is where it should be.

I'm also marking this as strike 2 against Zonegran. Strike one being that she is less vocal since being on it. I'll be talking to the nurse soon and will be sure to mention my grievances in order to try to get Naomi back off meds sooner rather than later.

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).

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.

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.

Crappy Anniversary

Today marks exactly 2 years of daily seizures for Naomi.
I think in all that time she's had 3 seizure free days.
Hopefully one day we'll be on the other side of this monster and be celebrating 2 years of being seizure free.

Our Routine Trip to Neurology

We had to go back to Cleveland for a routine EEG and follow up with the dietitian and neurologist. I was thinking about cancelling because July was great for Naomi then some changes were made and her molar started coming in and she went down hill. I figured we were wasting everyones time and the EEG would just be more of the same. It wasn't it showed IMPROVEMENT! She's not seizure free by any means and I knew the EEG would not be normal but I am thrilled that she's taken a step in the right direction.
I'm going to tell you all this mumbo jumbo and just play along like you understand.
There was no _________ I can't think what the Dr. calls it but it's good that it's not there. :)
There was no spikes, no seizure pattern just some spots here and there. The brain activity is slow so that's why we're seeing the developmental delays and probably has something to do with the underlying cause (unknown) of her seizures.
I told the Dr. people always ask if she'll outgrow them. I feel like, if she does... GREAT! but I'm not planning on it. I'm working towards her being seizure free at some point but for now, it is what it is. The Dr. said it's not something we can predict right now.
Naomi SCREAMED through the whole EEG, from marking her head to glueing on the electrodes. She fell sound asleep, then had to be waken because the test was done. Then she screamed some more when they took the electrodes off. The nice EEG lady made sure she got the gunk out of Naomi's hair and even combed it and put it in a pony tail.
The dietitian and I decided to go back to a 3.75:1 ratio for Naomi's diet. I think that on that ratio she is more regular in her bowel movements and that effects a lot of things for her and her seizures were better at 3.75:1 than they are at 4:1. Plus her BHB, which is the ketone level in her blood stream didn't change one bit from 3.5:1 to 4:1 so why deprive her of those good carbohydrates!
They all thought she seemed more calm and was extremely interactive and social. Actually she tried to climb up into everyones lap. Even some guy on a cell phone in the waiting room. She's all for trying out a lap and if you're near a computer where she can tap on the keyboard all the better. She kept putting her hand out at the Dr. and smiling like "hello friend". It was sweet.
I was talking to a mother in the waiting area who had a 3 year old there who saw the same Dr. we do. She told me she took her daughter to Colorado to see a Dr. about her seizures and he looked at her chart and who her doctor was and told her she couldn't get a better Dr. So back to Cleveland they went. I knew we had a good Dr., a great Dr. actually but it's nice to hear stories like that. She also said she called and talked to Martin,( the clinical nurse we used to also work with before the diet) her daughter had 4 seizures back to back and he told her to get to the ER. She told him they were 45 minutes away and he told her GET HER TO THE ER. So she threw her girl in the car and drove to the ER and when they got there Martin was there waiting on them. That is dedication! To your job and to the patients you care for.

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!

Forgive me, I know not what I do!

Ohhhhh no. First off I am not someone who wants to be in any kind of spot light. I would rather hold the camera than be in front of the camera. But here's what I've set in motion...
I was watching the news a while ago and they asked if anyone had any ideas for a news show to email them. I had just that day talked to more than one person about Naomi's diet and of course no one knew anything about it or how it worked. So I emailed the news station and told them a little about the Ketogenic Diet.
The health anchor emailed me back and said she was very interested in doing a story about it. She would get in touch with the Clinic and see if they would like any publicity about their Ketogenic program.
A few weeks, maybe months have gone by. Then yesterday I got an email from the Clinic. The news station contacted the media relations department and they'd talked to our doctor and she's on board with doing a story about the diet and thinks Naomi would be a great story.
So I emailed them back saying that's fine just let me know what we need to do. Then I freaked, called a friend and my mom and said "how do I loose 50 pounds fast?".
If it wasn't for Naomi and the fact that the diet has helped her there is no way I'd get on TV with her! I'm fine with her being on TV. She's cute! But it is not exactly on my bucket list!
I was actually hoping they'd find someone who it had been miraculous for and interview them. Though the flip side to that is that this will show the diet can help but it's not always instant and it's not a guarantee cure.
I hope this helps someone. That maybe someone who has had their kid on multiple medications will see this and see it as another option. An option that at least will give them their child back.
We are still on 300 mg twice a day of Keppra. I think I'll wean her down to 200 mg in the morning. But today I heard her call the dog "bear" a word she used to say over and over. I also heard "ball". She sits and looks at us directly in the eyes and smiles this sweet little smile. She also is more aware of what she wants and is jiggling door knobs and getting mad about wanting something and she can't express what it is. Yesterday she had no cluster and only 10 seizures all day long. All but about 3 of those were when she was getting up or I picked her up and she just got this look on her face like she'd gotten dizzy. She started on higher calorie meals yesterday and this morning her urine ketones were only trace. I'm not sure if it's the higher calories or possible teething. I need more than a day to figure that out. If it is teeth. she's still having a pretty good time of it. There was a time when if her teeth were coming in she could have near 100 myoclonics in a day and maybe 80 of them would be in 1 cluster. Today she's had no cluster but is having a few more than she's had other days over the past week.
The clinical nurse called today and I asked him if I was going to see a problem with withdrawal would that have already happened? He said , absolutely. That made me feel much better going ahead and dropping a dose in 1 week as opposed to 2. We've seen nothing but improvement so why wait!

Change in Diet

Today Naomi got an increase in calories. She went from 1050 calories a day to 1150. That means each meal is 288 calories. The dietitian is willing to go to 1200 calories but I want to just adjust by 100 calories for now and I'll keep in mind that the other 50 is there if needed. She just feels so skinny! We're not used to that in our house. She's 37 1/2 inches and 32 pounds now.

Last Friday we started weaning her off Keppra. It's going good. We've seen absolutely no negative side effects from weaning her and it's been quite a few days now so I feel like if something big was going to happen it would have.

She was averaging 30 seizures a day and about once a week we'd see about 50. That was split between 2 clusters (after waking overnight and nap) and some random here and there seizures. A cluster would usually have about 15. Since dropping her to 300 mg. twice a day she's having about 15 all day. She has days where she doesn't have any cluster. The largest cluster I've seen all week is 5! Those are really light and you have to be holding her to know she's had most of the seizures. One morning the first 4 seizures I only felt because I had my hand under her bottom and could feel the muscles inside her thighs slightly tighten. There was no eye movement, no head drop just that little muscle tension, quick as a hiccup.

Today she's eating better after being sick for quite a while. Eating and drinking.

She had a stomach bug, thrush, green goop in one eye and to top it all of one of those darn 2 year molars is coming in too!!!! But the fact that she's teething and we've still seen no big cluster is awesome!

Here's my latest Keto-dreams! I dreamed Bill told me "she's eating good" and there she stood in a corner eating Reese's pieces. I yelled at him that she couldn't have that.

Then I dreamed I was feeding her birthday cake in the car while driving. When we got out of the car I looked at her and said "what's that red and blue all over your face? Oh SH*T it's frosting! I can't feed you that!!!!! "

I think I have some Anxiety issues!

FINALLY

About December 7 Naomi's bottom right 2 year molar poked through. Now over 4 months later the bottom left showed up!
Naomi woke Tuesday morning about 1:30 and wouldn't go back to sleep. While she screamed I felt her gums and low and behold! I felt a sharpness! Finally!
She stayed up until 4 a.m. then fell back asleep. I should note that Monday night her ketones were only 40, which is unusually low. Also she had 3, yes 3 poopy diapers. All of which her Daddy ended up getting stuck with (yeah for mommy!). She slept Tuesday until about 7:20 a.m. then woke up and started having seizures. In about 10 minutes I counted 54! This after 2 weeks of never getting over 50 in a day, let alone at one time! Also most days she never got over 20. I gave her some acetaminophen and took her to therapy where I saw 4 more in the hour and a half we were there. She fell asleep at 10:40 on the way home from therapy and slept until almost 1:30. She woke MUCH better, still had a cluster of 8 light seizures upon waking. Then the rest of the day she was fine.
Wednesday morning she woke up and didn't even have a cluster! She's had 5 in the last 5 hours and all of those were barely noticeable, nothing that affected her balance.
It's so unbelievable that teeth can cause so much trouble! She's still got 2 to go, neither of the top ones have showed yet! I'm seriously hoping they're just not there!

Better and Better

I took Naomi down to 400 mg twice a day on Keppra, the only drug she's currently taking. She just gets better and better. I dropped her down to this dose last Sunday and Tuesday her occupational therapist Anna was like "Wow, we had a great day". She's more interactive with her brother, who thinks it's sweet and gross. He hates when her spit gets on him. Her sleep is better. She's slept through the night until 7 a.m. quite a few times. Today she was up at 4:30 and that seems to be her other waking time. If I can get her past 4:30 we're fine.
Her ketones are all over the place in the morning. Today they were only 5 and that's over an hour after she'd had a meal. They want them to stay over 80 ideally I guess. That just makes me wonder if it's the diet that's helping or not.
Her seizures are better. We're going a lot of days with no cluster at all. Twice now we've only seen 8 myoclonics all day and they were all very light. The other days are still good, staying below 25.
So it seems we're on a good track. Just wish I was more confident that it's the diet that's doing it. Since her ketones are all over the place I'm wondering if the Keppra wasn't just aggravating the seizures.

A Cluster

This is what Naomi having a small, light intensity cluster looks like. It actually started upstairs after a nap.

We have finally seemed to figure something out about her clusters. When she starts having them, encourage her to walk. We've always thought that when we could distract her during a cluster they lessened and eventually went away.

A few weeks ago during a long cluster I was holding her, I've always held her because she looses her balance and falls. She wanted down and wanted to walk around the house. So I held her hand and we walked circles around the house and they seemed to get further apart and get lighter. So the other day I was bringing her down from a late nap and she had one when we were on the steps. I handed her to her dad and she started having a cluster one after the other. Just boom, boom, boom so he tried rubbing ice on her foot to distract her and I said "put her down and make her walk". He did and instantly they slowed and got further apart. She wanted picked up so he picked her up and again boom, boom, boom, here they came. He set her down and again instantly lighter and further apart! So now when we wake in the morning I instantly make her get up and move. She still has seizures but the cluster is lighter and they're spaced out further.

I'm sorry to say, I'm so used to this it's just routine. Your kid sleeps, your kid wakes up and has a cluster. These aren't scary, it's when they are harder and go on and on that just scare the crap out of you!

Good morning sunshine!

Naomi would wake up at 5:30 a.m. and I'd think "OOOOO it'd be so nice to sleep until 7!"
Then she started waking at 4:30 a.m. and I longed for 5:30.
Now for the last two nights she woke at 2 a.m and stayed up until 4 a.m. then falls back asleep. She needs her medicine by 7 a.m, Isaiah has to be to school by 8:15, so we have to get up. Today we have an appointment at 8:30. It's really throwing everything off schedule.
During the 2 hours she's up she's happy, mostly sits still in the bed with me, shakes her Snoopy bobble head, gives me her forceful kisses where she grabs me by the ear to pull me to her. Then just eventually drifts off to sleep. Yesterday she slept until 7 when I had to get her medicine in her. Today she woke up at 6. I'm wondering if her teeth aren't bothering her. She had a small and low intensity cluster when she woke up and then has had one her and a there and two more tiny clusters before she was up for an hour. They're all tiny though, don't bother her at all. That's good! I did give her some Tylenol because it just seems like something is bothering her and she does have a molar that's pushing through (for like a month now!!!!) At least now you can see it when she yells!
I'm tired, I hope this all makes sense!

The Day After

Today Naomi woke at 5:30. She's been waking up pretty good. No big seizures. But, yesterday she only got to nap in the car on the way back and forth from the hospital. She got a decent nap going up, maybe 40 minutes. Then maybe only 20 minutes on the way back. So of course this morning she had a bunch of seizures when she got up. The biggest part of them were over by 10 minutes, but they kept coming, sometimes not more than a strong swallow, for another 10 minutes. Then she fell back asleep for an hour. Woke fine, just 2 small little jerks. Then was sleepy again by 10 so we laid back down. She woke up fine this time, but she's having one little, almost dizzy spell , every once in a while.
Also before her nap I thought she felt warm and she had a temp of 100, so I gave her acetaminophen and she fell asleep gnawing her finger... Those molars again???? Will they ever come? Her gums look "full" but no white showing.
So to keep her happy we're watching Signing Time, over and over. Isaiah must have gotten tired of the DVD we were watching because he switched it out for another Signing Time.
I can't blame him!
This is her first day on 3.5:1 also so I'm sure her little body is trying to adjust. Her little mouth sure doesn't mind the extra cream! The kid just about chips her tooth trying to get the cup in her mouth! I've read to give the fat first, but if I give her the cream, she'll say to heck with everything else!

Better Day

After a terrible day, blechhhh, blechhhh, let me get the bitter taste of yesterday out of my mouth!!!! Yesterday was terrible, she had a series of 3 clusters that started off light and not scary, to a when will this end, I'm about to give emergency meds seizure. Today she had blood work in the morning and fell asleep on the way home and woke up fine. So that kind of held her nap off. I tried to get her to lay down about 2 but she wouldn't have it. It was almost time to eat again. So I went ahead got her up and fed her then let her be happy and expel some energy for a while. Then checked her ketones just to see where they were, about 40. Then I put her, an myself, down for a nap. Hoping that since her ketones were higher at this time of day than they would have been if she'd have napped at 1, as usual, that she'd wake up with less seizures. I also gave her acetaminophen for extra ooomph. She slept from 3-4:30. Woke up.......... JUST FINE! Nothing, NADA! First time in?????????? So let me celebrate this good day, who knows what tomorrow brings.
But it does make me upset that her ketones aren't up all the time and that her diet needs to be tweaked. It shows me that all this added seizure activity could possibly be stopped if her ketones would level out.
Meet with Ketoteam on Friday, wish her luck!

One for the record books

I didn't want to jinx anything yesterday but Naomi woke up seizure free. She had 1 1/2 hours of therapy then fell asleep in the car on the way home. I put her to bed when we got home and she ended up sleeping about 2 hours and still woke up seizure free. She didn't have one single seizure all day. This is the first time since November 26, 2007. I don't know why, but Thursdays are always good days!
Of course she woke this morning and had about a 15 minute cluster, but they weren't too bad. She's eating breakfast now. The nutritionist from the Ketogenic program is supposed to call today.

Encouraging

I may be jumping the gun a little but I'm encouraged that the Ketogenic Diet may work for us. Yesterday after Naomi threw up twice, she was a little wore out. She fell back asleep for a little nap and woke up fine, but didn't want to eat much. I didn't push it, missing a meal won't hurt her. This morning she woke up and only had 4 little jerks in about 2 minutes.
Now she may take a nap and wake up and have her larger cluster but, for now she's good.

T.G.I.T.

Thank God it's Thursday.
For some reason Naomi's seizures always seem better on Thursdays. I notice because she also has therapy on Thursday mornings. This morning was no exception. She had 30 seizures this morning but they were spread out! She had about 10 in a minute or so, then about 3 minutes went by and she had 10 more. We came down stairs and she started again, this was maybe 20 minutes after the first ones and again, 10 in about 2 minutes. All fairly light. She went on to Therapy and first had physical therapy and it went well, she was keeping her hands down more. They said she's getting more comfortable with her balance and her sensory system is calming down (or something like). Then her occupational therapy went really well. She stayed on task and she interacted well. YIPEEE! I can't help but also note that this is also the first therapy session since going off the Topamax.