From Bad to Worse

Yesterday Bug had an EEG and followup doctor appointment with her neuro right after. The EEG went well and she slept at the right time to get a clear reading.

When we saw Dr. Coleman, her pediatric neurologist, he looked solemn and said that he had bad news.

He proceeded to tell  Michael and I that Bug's background has changed and is no longer normal. Instead, it is spiking even when she is not seizing and there is also some slowing in activity. And now the spike activity is happening on both hemispheres rather than just the right side like previous EEGs.

He said that this is noticeable with Infantile Spasms but that her seizures don't physical appear to be Infantile Spasms. Her neuro told us that she is experiencing spasm seizures. This is when she has her head drops and includes the seizures when she opens her eyes, makes wide arm movements and smacks her lips while blinking and opening eyes wide.

The treatment for these spasm seizures is to wean her off of Trileptal within the next 10 days because it does nothing for this seizure type. It is not hurting but it isn't helping. During that time we have increased her diet ratio from 3:1 to 3.5:1 (more fat and less carb). The Ketogenic Diet has shown great success is reducing spasm seizures for so many kids so we are focusing on getting her ketone levels really high again with more fat in the meals. Her ketones have been moderately high for the last few weeks but are only occasionally at their highest anymore.

We will give the 3.5:1 ratio 1 full week and if she is still having the spasm seizures we will go up to a 4:1 ratio (if her body is tolerating the diet, that is). And if she continues to have the spasms after 1 week on 4:1 then we will wean her off the diet and start a new treatment.

The new treatment options are this:

Sabril: Medical name is Vigabatrin. It is a short term medicine that Rayleigh would take every day for 2-3 months. It is specifically for spasms. Sabril can cause liver problems, irritability, sleep issues, and there is a more common effect of visual impairment. It is known to decrease her peripheral vision slightly. Like I said, she would take this medicine for 2-3 months (while continuing Clobazam) and then she would be weaned off the medicine and Clobazam would be the maintenance medicine. Supposedly whatever results she gains while on Sabril will remain when she is weaned off the medicine and stay on Clobazam.

ACTH: This is a steroid. It would a shot, that Michael and I would give her daily for 4-8 weeks. She would be on the steriod and Clobazam at the same time. It is similar to Sabril in that they are both short term but should produce long term results. The ACTH is known to significantly suppress the immune system so the neuro has already advised that if/when we go down this route that we should keep Bug in as much as possible during that time. The steroid also has side effects of causing high blood sugar levels, irritability, and sleep issues. The steroid requires a hospital stay to start so they can show us how to do the shots and monitor her levels to make sure that Bug's body is handling the steroid alright.

Rayleigh will have another EEG in 2 weeks if the spasms start to look controlled by the diet or 4 weeks if we need to start one of the treatment options.

Her neuro said that is completely up to Michael and I as to whether we'd prefer to try the medicine or the steroid start.

The worst part of this visit with the neuro was not this information though. The worst part, was that the neuro told us that Bug will always be developmentally delayed. There is an extremely high chance that she will never catch up. There is a slight possibility that she may still sit up, still talk and even may walk in her future. Chances of her talking before age 4 are very very slim and chances of her sitting or trying to walk won't improve until 5-8 years old. Michael and I were just devastated. Yesterday was a very hard day for both of us. The only thing that cheered us up all day was that Bug kept giggling. Like she was trying to tell Mommy & Daddy to be happy and that everything will be fine.

We are in a much better place with all of this today. I don't know why this happened to our baby girl but we will NEVER stop loving her and we do not love her any less than we did before. She is an amazing little girl and just a ball of love. Bug is a joy to be around.

Tomorrow is Christmas and we will focus on making this a wonderful holiday for our baby Bug. We will shower her with gifts from Santa to entertain her and hopefully help with her development and intrigue her to want to play!

Merry Christmas to all! May God bless your family during this holiday season :)

Sometimes You Don't Want Your Gut Feeling to Be True

As you can tell by the title of this post, I am not in the lightest of moods tonight. Bug had her checkup with the neuro today. We went in with 2 pages of questions to ask about Bug's behavior and things we've noticed. We got a lot of answers and here's pretty much the gist of it.

Rayleigh has nystagmus. It's an eye condition, not necessarily a brain condition. Simply put, nystagmus is when the eyes shake. In Rayleigh's case, her eyes only shake occasionally and not constantly. They shake side to side when she looks far to her left or right and I've also seen them rotate back and forth slightly when focusing. Her neuro said that based on what we know about Rayleigh and that she hasn't always had nystagmus that her condition was probably brought on by her seizure control medicines. Nystagmus as a result of seizure control medicine is most commonly attributed to Phenobarbital but can be a side effect of many seizure control medicines including Clobazam which Bug has been on for over a year now.

If Bug's nystagmus is a result of medication she will have the condition for as long as she is on the medication but on that same note, if it is the medicine causing the nystagmus then it will go away if/when she is off that medicine. We are making an appointment with Bug's neuro-opthomologist to find out more about nystagmus.

While we were talking with the neuro about this, Bug did her head drop. The neuro asked if this was the same type of head drop we had shown him on video back in October and we said yes. He then told us that it looked like a seizure and she did the head drop 2 more times in that 2 minute period. The neuro asked questions like when she does them (mostly when she's sleepy but also randomly rarely), how she reacts after a drop (like nothing happened, but sometimes a big head drop takes her a few seconds to recover and "come to") and then I told the neuro about this new thing that Rayleigh as been doing this week. When she's awake she will start smacking her lips, arms will go out slightly and then come back in and eyes blink.

He then confirmed (not 100% without EEG but pretty much) that we are describing myoclonic-astatic seizures.

The "head drops" are a drop seizure.

When she has the myoclonic-astatic seizure followed by a small head drop in the way that Bug does it is similar to last year when she would have a partial seizure that was followed by myoclonic jerks.

So what we thought was 12 weeks of seizure freedom was really just 12 weeks of partial onset seizure freedom.

There are 2 types of medicine that Rayleigh has not tried before that are used to control myoclonic-astatic seizures: Lamictal and Depakote. It could cause more seizures if we start one of these new medicines along with her existing medicines while on the diet. Plus, these both seem to have nasty side effects that are increased in children under 2 years old. But we know what's next to take if we have to get there.

The current plan is this: We have already increased her dose of Trileptal back up to 1/2 pill morning and 1 full pill at night along with the 1 pill of Clobazam 3 times a day. We can go up higher on the Trileptal if we need to. We will also be upping the ratio on her diet which has shown a lot of success in many cases.

The neuro says that there are several explanations for why Bug's seizures went from ONLY happening during sleep to completing changing form and happening awake. The most likely reason being that her brain is maturing as she grows older. The least likely reason being the diet.

The only good thing to take away from knowing that these have been seizures is that they do not physically hurt her or affect her mood. I do still believe that they are hindering her development though :(

The neuro is ordering an EEG with an immediate visit with him right after it's done to discuss results so I'll repost after that. It should be within the next 2 weeks. Until then, we will love our Bug just the same and enjoy Christmas with her!

So Many Thoughts

It's the Christmas season once again. Such a beautiful time of year here in Oklahoma! I love the cool crisp air outside and the giving feeling and the bright lights on the houses at night! I'm hoping Bug is enjoying it as much as me. This weekend we're taking her to the light shows around town, that was one of her favorite activities last year! They're easy for her to see and the Christmas music you tune to in the car is upbeat and she sits on my lap while Michael drives through the park :)

This Christmas we feel like we've already received a gift that is better than anything Santa could bring down the chimney - Rayleigh is 12 weeks seizure free!!

We've also been weaning her Trileptal down by 1/2 pill every 4 weeks so we are currently down to 1/2 pill twice a day! She has so much more energy now! I knew we'd see some good things after getting medicine out of her system but I had no idea how drastic her energy level would change!

While those things are really really awesome I have to say that going into Bug's neuro appt tomorrow Michael and I have a ton of questions! Bug is still doing her head drops that her neuro previously told us he doesn't believe they are seizure activity but because she's still doing them occasionally when she's sleepy I want to know more about them.

She's also recently started waking up startled about 10 minutes after falling asleep. What I mean is, she falls asleep and everything is calm and fine and then she pops her eyes open and looks straight up and arms slightly go out for about 2 seconds and then she relaxes, looks around and sucks on her pacifier and then goes back to sleep shortly after.

I'm also pretty concerned that her development isn't improving any faster than it was before seizure freedom.

I just feel sometimes like as soon as we figure something out a whole new issue feels our mind.

I'll repost soon after her visit with the neuro Thursday.

Better and Better

Rayleigh is doing terrific!!! I don't know what else to say about it!

She is 9 weeks seizure-free!!!

9 weeks in a row of no seizures! It's still unbelievable to Michael and me. She went from at least one seizure every single day to 9 weeks straight seizure-free!

I'm not going to lie, it's not like she's going through some overnight change and suddenly she's sitting, talking and all that. She's still behind developmentally but without the seizures making it worse she stands a really good chance of catching up. Now every physical therapy session sticks with her and she's making small improvements every day! The major thing we've been noticing this week is her vision improvement. She looks for me in a room and she has been making really good eye contact with those she knows!

We've been incorporating deli meats into the diet through the last week or so. She's eating it really well so I'll need to get in the Ketocalculator and create some more meats using various deli meats and carbs.

Last week, on Michael's birthday, we lowered her Trileptal by another half of a pill.

She went from:
1 pill of Clobazam 3x a day and
1 pill of Trilpetal morning and night, half pill Trileptal in afternoon

to:
1 pill of Clobazam 3x a day and
half pill Trileptal morning, full pill Trileptal at night

She's so much more awake and alert now that she's down in dose by 1 full Trileptal pill. And the best part is that she is still seizure free even after the 2 small reductions in Trileptal!! I hope for her sake that we can make it all the way to NO Trileptal and stay seizure free!

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A quick side-note story:
Rayleigh was prescribed Clobazam by Dr. Hernandez at Cook Children's Hospital one year ago. It was not FDA approved so we had to fill our prescription at a Canadian pharmacy and have it shipped to us. We had to pay full price for the medicine and about $6-$10 shipping depending on how many months worth of pills we bought at a time.

Well, Clobazam has now been FDA approved!!! We are very excited about this because now we can get it locally and it will be covered by insurance and more doctors will be able to prescribe it for their patients.

On the down-side, immediately after being FDA approved it is illegal to purchase it out of country. This wouldn't normally be a problem EXCEPT it's not yet available in the USA. They expect it to be available in a few months. This is a major issue because Rayleigh only has a month and a half left worth of pills now at the house. We called her neurologist last week and he is going to push through a prescription and contact the FDA at customs to get it to us when we need it. Hopefully this works or I have no idea what we'll be doing! We're working with her neuro on a plan B...

Overdue Update

Well, I thought I'd take a few minutes out of my day to do a quick update on Rayleigh Bug and her diet.

She is 7 weeks seizure free!!

It's so wonderful! I can't help but constantly smile!

Her development is still pretty much the same but she is making improvements. Her neck strength is probably the biggest thing we've noticed in the last couple of weeks. She can also sit for 10-15 seconds independently and sometimes tries to catch herself when she starts falling. We've also noticed that when she's doing tummy time that sometimes she will scoot her bottom up under her like she's starting to get in the crawling position.

She also had an eye appointment with Dr. Mike Siatowski. He's a local neuro-opthomologist and Rayleigh first saw him 6 months ago and he prescribed her glasses and diagnosed her with Cortical Visual Impairment. Basically it means that her eye development is moving much slower than that of a normal child but will improve and work at it over time. So last week Dr. Mike said that she is on a good timeline and he sees minor improvements. He said she's doing well and he expects her to have full vision recovery between 4-6 years. She's goes back in 6 months to do a full examination and dilate her eyes to check her prescription. Oh, and he said that the seizure control could speed up the timeline but it still won't make it an overnight change.

She's doing really well! This week our big challenge is to get her back on routine. She's going back to taking 2 naps a day - 1 after PT and a longer nap in the afternoon. I think that's part of the reason that she doesn't go to bed until 10:30p or later!

Record-Breaking Seizure Control

That's right, Bug has now set a new record on her seizure-free consecutive days! Her previous longest streak was 17 days (when we first started Clobazam) and now she is at... wait for it...

27 days seizure-free in a row!!!!!!!!

When we had our check up with her pediatric neurologist last week he said that if we went until October 17 (tomorrow) seizure-free than we can start weaning the Trileptal down. The weaning process will be 5 months long. It is a very gradual process so as not to disrupt anything the diet is doing. She is currently on 2 1/2 pills a day so we will take it down by 1/2 a pill a month. We're really hoping that once this gets down to a better level she will seem more alert and not so drowsy throughout the day.

Bug sleeps an average of 9-10 hours at night and then takes a morning nap for 45 mins - 1 hour and then takes an afternoon nap for usually 2 hours. That's a whole lotta sleeping and doesn't leave room for a whole lotta physical therapy and learning activities!

She is still making good progress on her development. Every week at Jim Thorpe with Miss Rachel helps more and more! We are also still working with an occupational therapist that also does some physical therapy from SoonerStart in home once a week.

I read in an excerpt from a book that there is not really a "honeymoon" phase with the Ketogenic Diet. Usually once you gain good seizure-control it is not temporary. If breakthrough seizures do occur it can be traced back to something specific like a "cheat" in the diet or the child being sick or something of that nature and you can almost always get back to ketosis to control seizures. Gosh, I really hope that's true!

Oh, and one more small note: Rayleigh's pediatric neuro looked at her weight gain and percentiles and her BMI, which is at 91% and said that we should call our dietitian at Cook Children's Hospital to lower the calories so that the meals are smaller (but still the same ratio of 3:1) so she doesn't gain too much weight too quickly. We spoke with her last week and she updated the meals Friday so she's been on a smaller calorie intake over the weekend already.

Diet Update

We are 2 months into the Ketogenic Diet and Rayleigh is doing so well! She has taken to it like a champ from the beginning eating every bite every time whether she's tired, full, fussy or whatever. Through September she was still having about 1 seizure a week. Today we are on day 16 seizure-free! KNOCK ON WOOD

She's showing more personality now than ever before. Even friends and family that don't see her every day are noticing the change. It's small and gradual but it's there. She lights up when she sees people she loves, she reacts to things more now, she vocalizes a lot more now. Bug is also making some strides in development. She's doing way more propping during tummy time and rolling all over! We're still working on getting her to sit independently and reach for toys on her own but we're making progress with her.

Rayleigh Bug has tried hot dogs and spaghetti squash (two different meals, not together!) in the last month and loves both. It's so exciting to see her trying new things!

Bug had a well-baby check up yesterday and she is currently 29 1/2 inches tall and just about 24 lbs. She is now on the 5-10% for height and 50% for weight. Her pediatrician doesn't think it's anything to worry about at this point and she looks healthy :)

In the last couple of weeks Rayleigh has been doing what we call "head drops". It mostly happens when she's tired and is usually in her Bumbo but she's also done them while we're carrying her. What she does is, her upper body will just kind of fall forward for a split second and then she'll pop right back up. We took a video of them and showed them to her pediatric neurologist and he doesn't think they are seizure activity. He thinks they are behavioral. Bug has her monthly check up with him Monday so we will talk more about that and discuss whether to get an EEG or not (right now, probably not).

1 Month Down, 23 To Go

First off, I am so sorry to my active followers for the super long delay on this update! Rayleigh has been keeping me very busy with her diet and physical therapies!

All of that aside, Rayleigh is doing great. The first few weeks on the diet were very up and down with results and consistency. After those weeks she went 7 days without a seizure and then she started having them once every 3 days. While disappointed that they had started getting more frequent we were still happy for her to get a couple days of break between a day with a seizure. So she had gone from 1-2 seizures every day to 1 every 3 days. Improvement but not completely controlled.

We currently stand at 1 seizure a week. We went 6 days seizure-free and then had a seizure on Monday at 5:30am and then we went 6 days seizure-free and she had one this morning (Monday at 3:30am). 2 seizures in 2 weeks is waaayy better than 1-2 every day.

The best part is that she just seems happier. She's starting to show more of a personality than ever. Baby steps is the key here and I think we are making them. Hopefully within a year or two I will mean literal baby steps but for now I mean small strides towards a big goal.

Bug's seizures still only happen during sleep. She wakes up, has a blank stare, tenses up with arms extended out, makes a grunting noise as the lungs contract and then draws her arms to her body and stays tense and labored breathing for about a minute before she relaxes fully.

So this Ketogenic Diet definitely seems to be doing some good and helping out a great deal! We will be talking with her pediatric neurologist this week to see if we can start weaning her Trileptal off so that she is just taking the Clobazam while on the diet. If we get better seizure control on the diet we could take the Clobazam off as well!

Rayleigh's development is slowly improving but I doubt we will see any major changes until we get consistent seizure control. Once that happens her brain will really be able to maintain what she learns through therapies and further interest and improve eyesight! Lots of goals for one little girl but we will never give up on her!

Ketogenic Diet Daily Routine

A day in the life of Rayleigh Bug as of late is very busy, non-stop and little downtime. But she seems to be enjoying herself! We have physical therapy or some other type of morning activity more days than not so we'll do a day that includes Jim Thorpe physical therapy.

Wake up between 8a-8:30a. Drink some water & have a diaper change, put 3 cotton balls in the new diaper to "catch" some urine for the Ketones test.

Take morning dose of medicine down with some flavored water.

Have a needle-prick for blood-sugar levels test.

Eat some breakfast, usually egg salad with applesauce and whipped up heavy whipping cream.

Take vitamins with breakfast. Half of a chewable multi-vitamin and a whole 600mg calcium vitamin.

Generally she has wet her diaper by now so I squeeze a cotton ball of urine onto a ketones test strip to see if the purple square turns dark enough for her ketones to be in the high level.

I make a cup of coffee and sip on that off and on while she sits in her Bumbo chair on the bed with me while I get dressed and do makeup then we get her dressed and have to be to Jim Thorpe for physical therapy by 10:30.

She does "playtime" with Miss Rachel for 45 minutes - 1 hour and then we drop off banner orders at the post office and head home.

Now we get our first break time of the day. After therapy she takes a 30 minute early nap around 11:30ish because it wears her out so I go and make a much-needed full cup of coffee and check the work phone and emails and maybe get some work done on banners for my Etsy shop.

By the time she wakes up it is close to lunch time so if it isn't too hot yet, we go out back and walk around the yard or take a blanket and lay down with toys and then we get her in her highchair for some Ketogenic Diet lunch! Today it was baby food chicken, baby food sweet potatoes, whipped up heavy whipping cream, butter and applesauce! She ate every bite just as always!



Next, after her food has settled we go into the office and she gets in her jumper while I work on the laptop. When she starts to get bored we head back to the living room for more playing.

If she napped earlier than she probably won't take her big nap until 2:30 so by then Michael is home and has had time to play with her, too! I give her her mid-day dose of medicines with flavored water around 2p and then snuggle her up for her afternoon nap.

This is normally a big nap and daddy joins her to rest from his day at work, too, so Mommy gets some good time in to have lunch and get more work done!

When she finally wakes up she gets a sugar-free Jello snack with a little whipped up cream on top and applesauce on the side!

Then we do more sitting activities and baby-entertaining until it's time to make dinner. One of us (Michael or I) will make dinner while the other feeds Bug her dinner!

After dinner we get some family relaxing time in by taking a small walk around the neighborhood and then some TV time and playtime.

Around 8p Bug gets her bath and then at 8:30 it is her last dose of medicine for the day. Before 9:30p Bug has a homemade Ketogenic Diet approved yogurt snack! Then BED!!! Whew, exhausting just writing this!!!

But that's not the end of it for Mommy! Once she's asleep I get my shower and then I make her meals and snacks for the next 2 days (Michael has been such a great help with this!) and then I clean up the house a bit, work on my banners a bit and hope to be in bed by midnight!

Ketogenic Diet: Day 4

Thursday morning, our 4th day at Cook Children's Hospital, went really well. Rayleigh Bug slept all night and went seizure-free! She woke up still hooked up to the IV and on a really slow drip. We poured Rayleigh a bottle of flavored water and she actually sucked it down! We were so thrilled that she was taking the bottle again! She still wasn't drinking a whole lot but the fact that she sucked on it at all was a good sign. Then she had her morning medicine and some breakfast: chicken, pears, apple juice, butter, whipped up cream. She ate every bite just like a big girl!

After breakfast Jessica Holy, Bug's dietitian, stopped in to see how Bug was doing but there were 2 nurses and a girl from labs to draw blood in the room so she said she'd come back by after lunch and talk and steal us to make some meals for the next day.

Not sure if I've mentioned this yet but on the Ketogenic Diet a child's blood sugar level should be around the 60s-70s. If it drops below 45 she gets 1 ounce of apple juice. Her levels have so far been between 50-80 but she did have one time at 6am when they checked and she was right at 45 so they gave her 20ml apple juice and a couple of hours later it was up to 69 so all was well.

Dr. Malik made his rounds before lunchtime and answered any questions we had and said that he was good with us going ahead and getting discharged that day instead of waiting the full 5 days because she was taking to the diet (minus the thrush/almost dehydration) and she was drinking again and we knew what we were doing. He prescribed her 2 weeks worth of nystatin for her thrush but said that since we caught it so early, once we can no longer see the white give it to her for 3 more days and she'll be clear.

Excited with his news we still knew that Jessica had to clear us to discharge that day. While we were waiting to see her again, a diabetic educator came in to show us how to use our own glucometer and it was alot easier to learn that way than when we read our instructions! When we get home we are to check her blood sugar levels once a day for 30 days and her urine ketone levels once a day every day she's on the diet.

After lunch and medicine and Bug's nap Jessica came back around. She told us that as long as Bug is back to sucking on a bottle nipple or sippy cup and we feel comfortable with the diet than she is absolutely fine with us going home that day! So she answered a few quick questions for us like how to change foods in the Ketocalculator (so I can swap some for organic choices) and what kind of butter and whipping cream is best to use. Then I went across the hall with her to make some meals for Friday so that we would have enough until we could get to the grocery store. It was so much easier I was whipping up meals in record time!

Before we knew it it was 5:30p and we were getting prescription forms and packing our cooler with Bug's meals and loading bags on a cart and signing discharge papers and then we were on the road back home :)

It is now Friday evening and she has not had a seizure since Tuesday night, 1:30am. Knocking on wood now but it could be the beginning of something amazing!

Ketogenic Diet: Day 3

Rayleigh had a seizure Tuesday night around 1:30a. It was only 40 seconds and not as intense as usual. Then she had a really rough 3rd day. It started off with Rayleigh still not able to drink out of a bottle or a sippy cup. Her morning medicine was awful – she is on Trileptal and Clobazam both in pill form. We crush them and put them in a syringe and suck up some water in it and squirt it into her mouth. She was fighting us like crazy taking her medicine. I'd squirt some in her mouth and she'd just have it sit in the back of her throat for what seemed like an hour! It took a while but we got her to drink every ml of her medicine in the morning. We normally give her a chaser of juice or milk (milk is no longer allowed) with her medicine but as soon as we put the bottle in her mouth after medicine she seemed to almost gag. Afraid she would spit up all of her medicine we gave up.
Shortly after medicine she had her breakfast. Day 3 breakfast was egg salad, applesauce, whipped up whipping cream. She ate every bite but still wouldn't drink water after. We let our nurse know and she let our dietitian know what was going on.
Our dietitian said that we could try giving Bug some Diet Sprite or flavored water like MIO drops or Crystal Lite packs. So we found some Diet Sprite but she wouldn't drink that either. It didn't seem to be the drink that was upsetting her, it was more like the bottle nipple itself. It was then that I noticed some little white bumps on her tongue; it looked like inflamed taste buds.

Before lunch Dr. Malik made his rounds and we let him know that she's eating fine and her ketone levels were still high like they should be but she won't drink anything. He was concerned about her vomiting the night before and now she wouldn't drink anything. He couldn't confirm if they were linked or not or if they had anything to do with the new diet. He said, “Let's see how today goes before we make changes. Hopefully she doesn't vomit anymore and we can start getting her to drink. Otherwise, let your nurse know and we can work with Jessica to alter the diet ratio.”
I think let Dr. Malik about the small bumps in her mouth and he checked her out with a flashlight and said it looks like inflamed taste buds to him also but it could also be the early signs of thrash. A yeast infection in the mouth, developed when the body produces or is introduced to too much yeast. He said that it is very uncomfortable and could the reason for her not wanting the bottle in her mouth, sucking the nipple would be painful.


Bug then took a nap and got some good rest in. She woke up and had a big lunch of butter, chicken, pears and whipped up cream. She once again ate every bite and then she had her first round of thrush medicine to get that cleared up so she could hopefully start taking the bottle again.


We took her over to the playroom for a little bit to get some energy going and get her mind off of things then back to the room for more napping. Starting the diet takes a lot out of a kid and makes her very sleepy for about a week. And on top of that she'll be more irritable for the first month.
During her nap Jessica came to steal me away to make some meals for the next day while Michael stayed with Bug. She woke up while we were making meals and came to visit us and then he took her over to the playroom again. Jessica went back over to Michael and Bug to see if he wanted her to get a volunteer to stay with Bug so he could come make meals but he said he'd stay with her because she just threw up again. Oh no! He said that it was a very small amount though and went into some happy kicking and babbling after so he took her to the room to lay down but she just wanted to stay awake and hang out.


Jessica said that if it is thrush that is causing the mouth pain and the issue with the bottle and taking fluids then that could very easily be the reason for the upset stomach also. So it was down to about 4 different possible causes: diet, thrush, dehydration, eggs. Eggs are completely new to her diet and maybe her body just can't handle it yet.


That night, to prevent dehydration the nurses started an IV with fluids. The goal was to her hydrated enough to help clear up the thrush and calm her tummy. Sometimes when you're dehydrated it's really hard to sit and drink a glass of water so we used that theory with hopes to get her back into the groove of drinking tomorrow.

Ketogenic Diet: Day 2

Rayleigh's second day on the Ketogenic Diet started out really well. She had egg salad with her breakfast which was a first for her and she seemed to enjoy it. She lounged around in bed for a bit after eating and then she fell asleep on and off for a good 2 hours.

When she woke up she had a jello and cream snack and then hung out until afternoon medicine. She was pretty drowsy all day but we were told that that is very normal when your body is transitioning from burning carbs & sugars for energy to burning fats.

The VEEG techs came in and took off the EEG leads and told us that Dr. Malik received the information he needed and that they got a good read on her even though she didn't have a seizure while hooked up.

For lunch she had level 2 chicken with cream, butter and applesauce. She ate it pretty well and then we went over to the playroom to get her out of the hospital room and walking around the halls and playing with toys. She really enjoyed getting out. Our dietitian found Rayleigh and I in the playroom and asked if we were ready to go to the meal room and make and plan some meals for Rayleigh to eat for the next day. We took Rayleigh back to our room and a volunteer and nurse stayed with her while Michael and I went with the dietitian.

We learned how to use the gram scale, how to weigh out her foods, how to read the recipes and how to use the Ketocalculator. The Ketocalculator is where her recipes are stored and the dietitian enters her specific weight and her ratio of the diet (3:1) and the recipes tell us how much each portion of the meal should weigh out. It's pretty neat and makes it easier than we expected. We will be spending more time in the kitchen preparing her meals than ever before but if there is some seizure control with this diet then it's all worth it!


When we got done the nurse and volunteer told us that Rayleigh was pretty sleepy but happy while we were gone. The nurse brought in some KetoCal formula mixed with just a little apple juice and some water. She did NOT like it. We gave her some time and tried again but same result. We were getting worried that she would get dehydrated. We began trying to find ways to keep her drinking - she wouldn't drink water or the KetoCal snack all day.

She ate every bite of her dinner but she was eating a little bit slower than usual. Normally, you give the kid a bite and like a baby bird she opens her mouth and whines for more. But not during dinner last night. It wasn't that she didn't like what she was eating, it was more like she was exhausted. So we got through dinner, tried a little water with no luck and then we watched a movie in bed. Michael noted how quiet she was during dinner, that's usually her cranky period but she didn't seem to have it in her on diet day #2. After the movie, though, she was doing some good propping and sitting before medicine.

Medicine went pretty well but about an hour and a half later she was still wide awake so we thought it would be a good time to try the KetoCal formula snack a second time. Almost immediately after getting the nipple of the bottle in her mouth she threw up. It was so horrible for her. She has never thrown up like this. Yeah, she's spit up milk here and there if she gets too active after a full cup of milk but never like that night. We paged the nurse and after getting things cleaned up we began our questions: "Is she not tolerating the diet?", "Is it something new she ate like eggs?", "Will she be ok?", "Is it because she's not getting enough liquids?", "Is it the apple juice mixed with formula?". 

Pretty much all questions were half answered and we were told that we'll have to wait until the morning to talk to the nutritionist but because it was only the one time she was probably fine and it was probably a reaction to the transaction of the diet.

Her blood sugar levels were getting lower when she was checked at 11:45p but nothing to be concerned about so we all went to bed and got a decent night's sleep.

Ketogenic Diet: Day 1

Arriving to the hospital we immediately feel like, "Alright. The time is finally here. We've been thinking and talking about this day for so long. Today, we are starting the Ketogenic Diet."



Bug has an IV in right now. A standard protocal at the hospital on the EMU floor in case they need to administer rescue drugs for a seizure. She is also having a 24-hour Video EEG that she will get taken off during her second day.





Because the diet excludes a lot of sugary foods children on the diet are at risk for low blood sugar. If Bug's level drops below 45 we are to give her an ounce of orange juice or apple juice to boost it back up. Otherwise, she is not permitted to have orange or apple juice while on the diet. Going to bed the first night she was at 54. Normal blood sugar levels for a child on the diet is usually in the 60s or 70s. So her's was getting a little low but they said that that is pretty normal for nighttime if they haven't eaten in a couple of hours.



The nurses and Michael and I are also checking her urine for Ketone levels, gluclose levels and sugar gravity levels. The first few diapers her Ketones were negative but at bedtime she hit trace amounts of Ketones! Yay!


Rayleigh Bug will be on the 3:1 ratio. This means 3 times the amount of fat than carbs and protein.





Her carbs are coming from her fruits and veggies. So like, apples, applesauce, strawberry, carrots, etc. Her fat and proteins are coming from eggs, beef and chicken.


We are working closely with the nutritionalist here, Jessica Holy. She is AMAZING. Very easy to talk to and to ask questions and very informative. She came in twice on the first day. The first time was to give us the basic rundown of how the diet will be started and to meal plan. We planned out what time of day she would eat meals and snacks and what she would have.



Because Bug is so young still she was able to start onto the diet with the Ketocal formula. It's a special formula for the Ketogenic Diet that comes in the ratio (3:1 or 4:1) you need so there is no measuring out. Her Ketocal liquid formula is being mixed with water to introduce it to her body. Her first 2 bottles of Ketocal were 2/3 water and 1/3 formula and she had those at 3p and 5:30p. Then at 7:30p she had a bottle that was 2/3 formula and 1/3 Ketocal. She tolerated this very well. Then after medicine Bug had a snack. Her first solid food on the diet. Her bedtime snack was.... sugar-free jello and whipped cream! Oh boy, was she in Heaven!



So far, so well!

Cliff Notes: Ketogenic Diet

A lot of people, even people IN the epilepsy world, don't know a whole lot about the Ketogenic Diet. In a phrase, it is a diet used to control hard-to-treat seizures.

The diet is a high-fat, low-carb, moderate protein diet.

Please note that I am not a nutritionist nor have I spoken with one in depth about the diet. All of this information is from what I have been told by doctors and what I have researched online and in books. So bear with me as I don't use fancy lingo or doctor terms. After we see the nutritionist I will definitely make an update post!

Some really excellent resources about the Ketogenic Diet are below if you would like to do a little research on your own :)

FAQ in simple terms: http://www.charliefoundation.org/faq/ketogenic-diet.html

Diane Sawyer did a story on ABC about the Ketogenic Diet and follows 2 children's stories: http://abcnews.go.com/Health/Wellness/ketogenic-diet-high-fat-diet-treat-seizures/story?id=13366995

From what I understand, the Keto Diet was created because an accident was found. A wonderful accident. They were performing studies on people with epilepsy, one of those studies was fasting. They found that once the body reaches a point where it is feeding off of its stored fat rather than burning carbs, sugars, etc. for energy the seizure activity was decreased and some were seizure free. The process of your body using stored fat is called Ketosis - hint Ketogenic Diet.

So this Keto Diet mocks that process by giving your body more fats to burn than other ingredients.

Rayleigh will obviously have to take a multi-vitamin each day to keep with the deficiencies that will be in the diet. A typical meal could be 1/4 a hot dog, heavy whipping cream blended with flavoring like vanilla extract or cinnamon, 3-4 green beans and a slice of apple.

In Rayleigh's case most foods will go through our food processor to be pureed or close to since she is not yet finger feeding.

In the Diane Sawyer interview about Keto Diet (link above) she talks with 2 experts about the diet, both doctors. They state that several of their patients starting the Keto Diet have already tried several anti-convulsant medications. One of the doctors also says that they've had several children who have hundreds of seizures a day become seizure-free completely and most of the time that happens within just a few weeks of being on the diet.

The Charlie Foundation's FAQ breaks down the numbers:

• 1/3 of children on the diet get to 90% or more seizure control
• 50% of those children become completely seizure-free
• 1/3 of the children on the diet get to 50% seizure control
• 1/3 of children on diet quit the diet because it is either ineffective or not done right

Rayleigh will continue to take her Trileptal and Clobazam while on the diet. If she gains seizure control on the diet we may take her off the medicines down the road.

If the diet is successful she will stay on it for 2-3 years and then we will wean her back into "normal" food.

Most of time, whatever seizure control you gain while on the diet 2-3 years you keep. So, let's say Rayleigh would go down to 1 seizure a week rather than 1-2 a day; when she gets off the diet she would most likely stay at 1 seizure a week and not go back to 1-2 a day.

If the diet is not successful she will get off of it within 2-4 months of starting. We should see starting results of it after she has been on the diet for a full 10 days. She weans onto the diet while under medical supervision. We will be at Cook Children's Hospital in Ft. Worth, TX to start her on the diet soon.

We really need this to work for our baby girl!

Rayleigh's 4th of July Tradition

Just about every 4th of July Michael and I (and now Bug, too!) go to a local festival during the day for some shopping and fair food and then come home and relax until fireworks time with family! We go to a nearby place that does a huge fireworks show and sit on some fold out chairs and enjoy the show Oklahoma style! We're usually right under the display and it is very loud and bright and beautiful!

Bug was only 3 months old for her first Independence Day fireworks show and was still in that asleep more than awake phase so it wasn't really a surprise that she slept through the display of loud and bright fireworks in 2010.

This year, though, it seemed like she timed it perfect. She stayed awake right up until the first firework went off and then snuggled up to her Lovie and fell right asleep and stayed asleep for the whole show!

Developmental Therapy

Rayleigh Bug is now receiving physical and occupational therapy from 2 different sources. One is a free, local early-intervention program called SoonerStart offered in the state of Oklahoma. The other is Jim Thorpe Rehabilitation Hospital that is located as part of the Baptist medical center where her neurologist and pediatrician are both at.

Bug has been with SoonerStart since she was 7 months old. They are an in-home service that arrive weekly to work with your child on their need (physical, occupational and/or speech) for an hour. You see the same OT/PT/ST each week at the same time so your child is familiar with the person and the routine. Our OT is Stephanie and she is great. Because SoonerStart is offered free and is financed through the state they don't have as many therapists as they need so usually your OT or PT will work as both parts as your child needs. So, as Bug's OT, Stephanie's job is mainly to focus on getting Bug to activate a toy, attend to toys and people, reach for things and things of that nature. But, working both sides of things she also works on getting Bug to sit, crawl and prop. 

We had our first evaluation with Jim Thrope last week and we were pleasantly surprised! We had no idea how well Rayleigh would respond to "working" outside of the home. You see, with Jim Thrope therapy you go to their facility and it all happens in one room on playmats, swings, big toys and more. 

We met Bug's PT, Rachel, the first day and Rayleigh seriously adores her! So this past Thursday was Bug's first day of work :) She did AMAZING for Rachel. They did sitting activities, crawling position, activating and holding toys and rolling activities. 

Jim Thorpe would like to see Rayleigh Bug twice a week and we would love for her to go twice a week. Unfortunately, that is not in the cards for us right now. Jim Thorpe costs us $25 out of pocket each visit (that is after what insurance covers) AND insurance will only cover 20 visits a year. That's not even every other week :( We're feeling a little discouraged that we found this amazing place but aren't able to utilize the full potential of it. Hopefully we'll hear about TEFRA/Medicaid soon and we'll be able to go to Jim Thorpe for Bug as often as they want us and not have to worry about the money part of things!

Oh, and Rayleigh is now saying her MMMMmmmm's which includes her saying "mamama" a few times :) 

1 Week; 2 Appointments

Rayleigh Bug had a fairly busy week this week. Looking back at the calendar there is not one day unmarked... except tomorrow! Maybe a good ol' fashioned morning of relaxing in bed and drinking some coffee? (Bug will of course have milk!)

Tuesday was Bug's 15 month well-child visit with her pediatrician. She is 21.2 lbs and 29" long. Getting big! Still in the 25% but she's still on her same curve so she's perfectly fine!

When her pediatrician was checking on her he found an ear infection in her right ear that we had no idea she had! She hasn't been showing any signs of discomfort, couching or tugging at her ear! Our first thought was, maybe this could explain the sudden cause for increased seizure activity!

Then we talked with the pediatrician about her diet. Because Bug is developmentally behind she is not finger feeding yet. She is currently eating level 3 jarred foods, sometimes 2 level 2 jars. She also eats mashed up food or small bites of banana or other fruits like peaches or plums. But because she isn't eating a huge variety and isn't on a toddler formula (just organic whole milk) her pediatrician recommeded going to Akin's and getting an organic multi-vitamin that contains iron. So that's exactly what we did.

He also prescribed Ammoxocillian that we picked up that evening.

She got her chicken pox shot and goes back in a couple weeks to get her Hep A shot and for her pediatrician to check on her ear.

Then today, we saw her pediatric neurologist for a routine check up. This is the last time we will visit with him in person before she goes to Cook Children's Hospital for the Ketogenic Diet. We went over several medicine choices and discussed why she isn't trying them. Here's the breakdown.

Depakote: She's too young. Ped. neuros generally don't give this to kids under 2 because they are at a much higher risks for the liver problems that are a known side effect of Depakote. Also, she would need to be checked for mitochondrial diseases before starting this medicine because it can have adverse reactions if she has a mitochondrial disease.

Lamictal: Her ped. neuro isn't against Rayleigh trying this one now that she's a little older but she's still at risk for the rashes associated with side effects and how it affects her sodium levels. This medicine has a very long weaning onto process so we don't have time to try it and see if it works by the time we start the Ketogenic Diet and he (and I) believe the diet has a better chance than another medicine right now.

Vimpat: This is a very new medicine and doctors don't know a whole lot about it yet. There haven't been enough children on it for a long enough period of time to know how it affects a growing, maturning brain like Rayleigh's. It is a medicine to consider and we are going to talk to the epileptologist at Cook Children's about it when we go down for the Keto Diet.

Dilantin: This could control her type of seizures, being partial onset seizures. But generally, ped. neuros do not like giving it to children under 3 years old. Being on Dilantin for long periods of time can cause hairiness and teeth & gums problems. Also, the body grows a tolerancy for this medicine over time so the dose would have to be increased frequently for most cases.

So other than that we discussed her ear infection and as soon as we brought it up her ped. neuro said, "I wonder if that is the cause for her having 2 seizures a day recently?" Exactly what we were thinking.

Yesterday was her last day on Topomax and her ped. neuro says it will be out of her system by Monday so if she is still having 2 seizures a day after Monday then we are going to start her back on Keppra, 2ml twice a day. She's been on Keppra before but never in combination with Clobazam and/or Trileptal. Her ped. neuro said that it controls from a different area than the other 2 so we might be able to gain control until the Keto Diet by having 3 medicines that attack from 3 different areas. Again... we'll see...

When we go down to Cook Children's we are supposed to ask her epileptologist about doing a muscle biopsy and bloodwork (POLG1) to check for mitochondrial diseases and when he might think they should be done and we will also discuss more about the Vimpat medicine.

Another Waiting Game

When we left off, Rayleigh's pediatric neurologist told us to wean off Topomax and she would stay on the Trileptal and Clobazam alone until we started the Ketogenic Diet in August. After a couple days of only taking Topomax at night Rayleigh began to have seizures twice a day rather than just once. The seizures remain only happening while she's asleep, so she went from having one during her nap to having one during her nap and then a second about an hour after falling asleep for the night.

These types of changes are not uncommon when weaning off of an anti-convulsant medication but when it continued for a week we called her neuros office and spoke with the doctor on call. It was not her usual ped neuro but we had spoken with this one before. She told us that based on Rayleigh's weight we can go ahead and increase her Clobazam from 25 mg daily (1 pill in morning, 1.5 pill at night) to 30 mg daily (1 pill, 3 times a day). We hadn't tried splitting her Clobazam into 3 times a day like she's been doing with her Trileptal. 

So we gave her 1 pill with her 2ml Trileptal right after I got off the phone with the doctor. That night she did not have a seizure.

In fact, she has been back down to 1 seizure a day, at naptime, since we increased the dose of Clobazam. Its weird though, because Clobazam does not usually take effect so quickly. We'll see...

Bye Bye Topomax

We gave Topomax a fair trial. She was on it for a total of 18 days, 13 of which was the full dose (10mg capsule twice a day). The medicine never even slowed them down. She continues to have one a day, and unfortunately had 2 yesterday. They are still only happening about 30 minutes into her nap - she wakes up, has the episode and often goes back to sleep exhausted from the locking up.

Something we noticed a couple of days into Topomax was that she went back to holding her breath for approximately 20 seconds at the beginning of her seizure. She did this on previous medicines before she started Trileptal but when she was on Trileptal & Clobazam alone she would breath fairly normal throughout the entire seizure. So holding her breath again while on Topomax concerned us greatly.

Tried calling her pediatric neurologist Friday but he had a short day that day and didn't return our call Monday morning so I called again yesterday but he was out of the office so we talked with him today. He believes that Topomax would have shown some seizure activity decrease by now if it was going to at all. SO, we are taking her off.

It's a slow wean process of Topomax so she doesn't have withdrawl seizures. She will go down to once a day tomorrow and remain on that dose for 2 weeks and then be off all together.

She has no room to go up on the dose of Trileptal right now but we can call her pediatric epileptologist down at Cook Children's Hospital to order a blood test and see where her levels of Clobazam stand. If there is room to go up we might try that since Clobazam controlled her seizures for 17 days when she first started it.

We have scheduled her to start the Ketogenic Diet in August at Cook Children's Hospital and we're eager to give it a try even though it will involve a lot more than any medicine has. That can be a whole other blog post though! And I'm far too tired for that right now!

Positive notes:
I have a good feeling about the Ketogenic Diet
Rayleigh is sitting independently for a couple of minutes at a time
Her balance is improving when sitting & she corrects herself when starting to lean 
Rayleigh cut 2 new teeth
She's tracking objects & watching toys very well now
Rayleigh's smile lights up the world

Down to the Last Options

So in short, Trileptal is no longer working to the potential we expected. Rayleigh is on 2ml Trileptal 3x a day and 1 pill of Clobazam in the morning and 1.5 pill of Clobazam at night. She continues to experience 1-2 seizures a day.

We called Cook Children's Hospital today because I am ready for her to start the Ketogenic Diet. My husband is ready, too but wants to wait a few months to exhaust one more option first. Topomax.

We spoke with Dr. Coleman and let him know that Cook's said the earliest available we could go down to start the diet would be August. He said that we aren't out of options as far as medications go, to try meanwhile. He said that Topomax would be the perfect medicine to start now because if it works we can cancel her Keto appt and if it doesn't then we have to stop that medicine when starting the diet anyway.

With the Keto diet, Rayleigh would still be on medicine throughout the course. If the diet controls her seizures she will be on it for 2-3 years. The Ketogenic Diet is a high-fat, low-carb, moderate protein diet... a stricter Atkins Diet. It teaches the brain to burn fat rather than food which uses the Ketones. Other than that, scientists don't know why it works... just that it does. Rayleigh pretty much has a 1/3 chance of success with the diet.

We start Topomax tomorrow or the day after (depending on the pharmacy). She will start with 1 capsule a night for 5 days and then 1 capsule twice a day for 7 days. We are to call her neurologist back in 2 weeks to report how Topomax is working. If it isn't we'll simply stop the medicine then.

In other news, Rayleigh now sits by herself for a minute or 2 at a time. Enjoys tummy time much more. Holding the bottle all by herself everytime. Stands at the table using her hands for a couple of minutes. AND takes a couple of steps when I hold her up by her arms!!! Yay physical & occupational therapy!!

Don't Know What's Going On

Rayleigh started Trileptal on April 14th. She then had 3 seizures over a 2 week period. A major improvement from the 3-5 per week she had been experiencing. Then, the first week of May she had 3 in one week. This past week she had one almost every day :( Yesterday she had 2. One at 6a and a second at 3:30p. Both about 20 minutes after falling asleep. Today she had one at 6:05a and a second one at 4:20p. I got the last one on video so we can show Dr. Coleman (her ped. neurologist) the changes. He may want to see if we can get an EEG to see if there are any changes in the brain where they are starting, etc.

Dr. Coleman is not the on-call doctor this weekend so we will be calling him first thing tomorrow morning.

There is a range of numbers they use when testing blood for medicine levels. When Rayleigh was on 4.5 ml a day her levels tested at the low in of the normal range. Last week when her seizure activity picked up we bumped the dose up to 5ml a day (spread into 3 doses a day). This hasn't improved anything.

We will see if we need to up the dose more or maybe try a different medicine combination with Trileptal. Right now she's on Clobazam & Trileptal. We may have just gone through a "honeymoon stage" and this might not be the medicine for her. Will post tomorrow after we hear from Dr. Coleman.

I Spy With My Big Blue Eyes

Today Rayleigh saw a pediatric neuro opthomologist. In short, his job is to link any eye problems to neurological issues. There are only a couple in our state so we have had this in our calendar for a while now. Previously, we had been excited and ready for the day to arrive, but all this week I just got more and more nervous! You just never want anything to be wrong with your child, and on the flip side, you also want to be able to fix whatever is wrong!

So we get there and the technician takes us back to the exam room and asks a few questions (was she full term?, what concerns do you have?, etc) and she starts some small tests on Bug. For instance, she has a rectangular board that is half painted solid gray and the other half has black and white contrast stripes. Rayleigh Bug had just woken up from a nap and wasn't participating in this at all. Then the technician pulls out this large spinning wheel and the entire thing is black and white stripes. Bug would look at it and look away. I started getting nervous again for my baby girl :(

Then Dr. Mike comes in and does the same tests and uses a light also. Then he and a nurse get some drops in Bug's eyes to dilate them. After about 20 minutes her eyes are dilated and we go back to the exam room to see Dr. Mike. He looks in her eyes with a light and he held little glasses lenses up to her eyes.

Dr. Mike finishes with Bug and we soothe her and Dr. Mike lets us know that she has a slight astigmatism that he prescribed glasses for her to wear only a couple of hours a day to help correct that over time.

Then he lets us know that Rayleigh's vision issues derive from her seizure activity. They are starting in the focal region of her brain causing delays in vision. He is confident that she will improve a lot if/when we can get her seizures under control.

She has Cortical Vision Impairment (CVI).

Her eyes are just fine, it's just the part of the brain that reads what she sees that is having the issue. This is good and bad news. Good, because there's nothing REALLY WRONG with her but bad because this isn't just something we can fix.

We'll have to work even more with Rayleigh when it comes to looking at us and things around her. A lot of high contrast is great for her. I should try and get her to notice me and track toys without making noise to follow or let her know where I am.

We go back for a check-up with Dr. Mike in 6 months. He said he will be very surprised if her vision hasn't improved by then!

Only More Questions

To summarize the last post: Rayleigh started Trileptal on Thursday night, April 14. The next day was her first full day on the new medicine. She had a small seizure that Friday during naptime. It was under 30 seconds, not very intense and she breathed well throughout the entire time. She had a seizure-free weekend and then had a small seizure (like the previous Friday) on Monday morning. Then she went over a week without a seizure. Bug woke up with a small seizure on Wednesday night, April 27. The night before her appt. with Dr. Coleman, her pediatric neurologist.

Back to Friday, April 22, during her "seizure-free" week; we were doing some Earth Day fun with Bug's friend Maddie. Bug was sitting in her Bumbo chair enjoying the feel of paint between her toes when all of sudden she would burst out in shrieking tears for 2 seconds and then be fine again. She did this twice with me thinking it was her ongoing teething pains but then I started to think that this sounded much more intense so I started watching her face  mostly when I noticed that right before the shrieking her arms would flail out, tense up and go straight out to the sides and then she would relax. She did this about 7-8 times over a 4 minute period.

They looked like a more severe form of the myoclonic jerks she used to experience after a tonic/partial-onset seizure. Bug has not had that jerking motion since that day. I talked to some fellow moms that have daughter's with epilepsy to get some idea of what the jerks might be from and did some research online. I found out a couple of things to talk to Dr. Coleman about at our next appt.

1.) Body & brain adjusting to new medicine
2.) Myoclonic Seizures
3.) Infantile Spasms
4.) New seizures developing
5.) Dravet Syndrome (tested negative for this in the past)

Naturally, this was the first topic we discussed at her appt. with Dr. Coleman. I demonstrated exactly how I saw the jerks and crying for Coleman since I didn't capture them on video.

Coleman said that I need to keep an even sharper eye out for these motions because if they happen again it could be Infantile Spasms which is another form of epilepsy and she would need stronger medication for such as steroids. But because they only happened the one day and it was 2 hours after her morning medicine dose he feels that it was most likely Bug's brain reacting to the new medicine. Coleman said that medicine's have an effect that can change the way a seizure starts or looks and that is another possibility of why she had the jerks. The number one thing that Michael and I were concerned with regarding the jerks was that she had them while she was wide awake. She's never had a seizure outside of sleep. Coleman said that there really isn't a direct answer for why, just possibilities.

We also discussed her upcoming appt. with Dr. Siatowski, a leading neuro opthomologist in Oklahoma. He kind of let us know what to expect and what he would be sending to Dr. Siatowski as far as notes, MRIs, EEGs, etc.

Dr. Coleman said that he feels good about this Trileptal because it's the first medicine to take control so quickly and that we need to call him if we see the jerks again or if the seizures become frequent again. Other than that, we don't see him for 2 months.

We haven't seen any jerks since that one time. She also hasn't had a seizure since Wednesday night. Please keep Buggie in your prayers as we give this medicine a fair trial.