What Is A Seizure?

For people who don't know anyone or have never experienced a seizure, they are pretty scary regardless of the degree of severity. In fact, they are so scary that as an adult who has witnessed seizures in my child, I have horrible dreams about them. When its your child that has the seizures, you are in constant fear that at any moment it could all happen again. Its a fear that rears its ugly head every time there is the slightest fever, the littlest bit of teething. But what is really scary, is that they can come on without any warning signs like a fever. They just happen. They don't just happen when you're in the comfort of your own home, nope they can happen at school, social events, walking from one room to the other. They just appear, and there is nothing you can do to stop them immediately.

Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".

Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.

Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!

The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.

For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.

Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.

Sigh of Relief!

Imagine this:

Sitting down at your computer and opening up an email that the subject line says
Re: Daniel S.

Do you feel dread too?! I did!

Opening it and reading this:


Hi
Good news! Everything looks good. EEG - no epileptic activity. Background waves a little slow - that's because of the syndrome - doesn't worry us at all. And both VEP and ERG are normal!
Let me know if you need anything else.
Kathy

As my daughter would say "Hells yeah!" Me I just sat there and re read it about 5 times, cried and then got up and did the happy dance! It you're not sure what the happy dance is, click here!

Yesterday we went to the hospital got all these tests done and Daniel did not like them one bit. I actually broke down and cried in front of everyone during the second test because he was so upset and they had to give him medication to relax him. Hell I'd be upset too if I was strapped to a stretcher and my arms taped down not being able to move for over an hour. Plus he was overheating from being wrapped up and taped down and screaming. Just got to me this time, just how shitty it is that he has to go through this crap. I know there are other children out there that have to go through far worse then we do. And my heart aches for you, it really truly does.

This was Daniel's 3rd clean EEG since he was on ACTH. This means we can now start to wean Daniel off his seizure medication and the only meds he will be on is for drooling and constipation. Which if I can start to get him to eat things like prunes and such, we will be off that too.

So, 6 weeks from now...Daniel will be off Vigabatrin (hopefully for good!) NO MORE INFANTILE SPASMS. Now please realize that I know we are not completely out of the woods because with his brain malformation (CBPS) seizures will ALWAYS be a great possibility. I know this. But for right now......they are frickin' gone!!

This also means that we can start back up on the TES therapy, the TENS therapy, and the VitalStim therapy! I will hopefully in a few months have a little body who has a stronger trunk, who can swallow better than before, and who will be more alert and aware because he is mostly drug free.

On another note: Daniel started doing swim therapy and he isn't screaming like he was a month ago when we first tried and had to stop because it wasn't productive!! I'll post pictures later of that one. I have to get his therapists permission ;)

Finally Warmer Weather!

Yesterday we had some warm weather, and we were outside putting up the pool. Daniel wanted to participate also, so he got to make sure the hose worked properly!!!

It was so cool to see Daniel being able to get through the sprinkler by himself. Last year, I made Victoria run through the sprinkler with Daniel and he loved it. (I'll have to dig up the funny picture from last year and post it, we'll get a laugh from it again!) This year, put him in his gait trainer and let him go!! WARNING: THIS PROBABLY ISN'T THE GREATEST FOR THE GAIT TRAINER!!!

But this is Daniel's freedom and I want him to be able to experience these things on his own. He was doing his high pitched excited squealing! Which is really really LOUD! Can't wait til he is able to get in the pool, the neighbors will be wondering what all the noise is about!!

I just love the above picture, he looks so grown up doesn't he? So serious.

Here is my pathetic excuse of making a tent! Remember, I have add 4 girls and Daniel is my first boy......I'm still getting use to doing the boy things....playing with cars & trucks, looking for bugs, making tents, playing in dirt! LOL and you can tell the tent skills are WAY off, and to boot I used a PINK, girly girl sheet!

OOOOH YEAH!! I almost forgot, lets get to the really good stuff. Daniel went to the neurologists last week for his routine check up and his doctor said that we have pretty much done everything he can for Daniel. (I know this probably doesn't read right, but its a good thing!) What he said was that Daniel is doing so well, and he is doing all his therapies and basically has his equipment and is all set. The only thing we need to do is schedule an VEP and an ERG. Then once those are done and his EEG is good that we will start weening Daniel OFF his anti-seizure medication. Everyone do the happy dance with me??!~ I do this with a little hesitation because I'm always afraid to screw with something when things are going good!! But to have him off medicine......that he has been taking for years, is an awesome thought. No side effects, no making it harder for him to pay attention, just a clear clean drug free life!!!

Then in his speech/augmentative therapy, his therapist is training in VitalStim. This is hopefully to improve the muscles in Daniels throat (throat, tongue, cheeks,mouth) and will help with his swallowing. It will also help with speech in the long run. So BONUS!! I had her attack the electrodes to me first before she even touched with Daniel. If its going to hurt him or scare him, I wasn't sure we were going to start it right now. But actually its just a little weird, it starts off really low and it basically feels like a tingle on the skin, then as it is ramping up you kind of feel like there are little ants running on your throat and then all of a sudden you get this sensation and you have to swallow. Hence...swallow therapy. We did this on Daniel and you could see in his eyes when he could start to feel it, but could tell he wasn't uncomfortable. As soon as Daniel put the spoon up to his mouth and put the food into his mouth, she started Daniel's "tickle machine" and you could SEE him swallow, you could hear him "swallow" and after checking his mouth.....everything was gone. Everything was swallowed in ONE swallow. AMAZING!!

Now for the crappy news: We have been trying for the past 9 months to get approval for Daniel to get the Mygo. Well they won't order the Mygo for Daniel until we get prior approval. Our secondary insurance keeps coming back every couple of months saying, well we need this or that and then our Rep sends it in and then you're back in line at the end of the line. You lost your place, and you're at the end of the line. Well this time they came back with what I will have to classify as the stupidest, I mean the utmost stupidest remark that we now have to come back with an answer and wait at the back of the frickin' line again.

Here is the comment: The Mygo feeding system specs that was sent in states that this system is for children ages 4-12, said recipient is only 30 months or so. Please provide information as to why the child would need this. Information must come from doctor that wrote medical need of necessity.

OK, if I were in front of them, I would have a few choice words. It would have started with: are you really that dumb? How about the fact that if you go to the next line, you'll see that the height requirements for this seat are what? there you go......Daniel is tall for his age. He was frickin' FITTED for the seat 9 months ago and we got this seat because the seat that is the next size down does not fit him for his height anymore. And when we started this process he was only an inch away from the Mygo and we knew that by the time you butt munches got around to approving it he would have grown?! Which he did! Hell by the time you get to approving this he will be FOUR frickin' years old!! (he is only 2 1/2 yrs old right now!)

OUTRAGE........I could not believe it. His doctor was equally upset about it and said that he was writing a letter and going to say something along the lines of..."Gee I hope that this child doesn't aspirate (choke) or anything of that nature and that the parents then don't turn around and sue you because of your lack of intelligence in this matter. Daniel has failed a modified swallow and urgently needs this piece of equipment. Currently he sits on his mothers lap to eat because he does not have adequate support which would have been provided had he gotten timely approval for equipment request over 9 months ago!

He was also going to ask that Daniel NOT be put at the end of the line and that immediate review be given. So we shall see where that gets us!

Another Testing Day - UPDATED 4:30 PM

This morning bright and early we reported to the EEG department at Children's Hospital to get another EEG. (At least this time it was only 30 minutes and not the 24 hour one!)

Regardless of how long the test is .....Daniel STILL does NOT like it! Never gets any easier does it!?

After the man stopped handling his head and he got use to being taped down to the table and not being able to move his arms, and The Wiggles video on........he was much better. But just let me ask you this question: Would you, as an adult, not cry too if you were taped to a table and couldn't' move?!?! OK then......

We came home for Daniel to take a nap and get the goop washed out of his hair. Then we go back to the hospital to see his neurologist and his dietitian today. Cross your fingers and hope the EEG came back clear again, and that Daniel has gained some weight since last month! Gotta fatten this boy up some. Right now he is long and lean.

Check back later today for more updates.

UPDATE: The Test Results Are In...............May I have the Envelope Please..........

AND WE HAVE A WINNER!!!!!!!!!!!!

No seizure activity, no Hypes, no nothing bad!!!!!! An Appointment where NOTHING BAD was discussed!!! We left with an A++++. Lets revisit the last time this happened!!

We are going to keep Daniel on the Vigabatrin until the next visit in 4 months and we will discuss weaning at that time.

Oh yeah, and he gained 1.5 lbs since his last weigh in 5 weeks ago! Yay!