Monday, January 12, 2009

Seizures, seizures, and MORE seizures

So the seizures are back with a vengeance. What else is new. This time, I have no clue why they are so bad. The only changes to her daily diet/routine were the addition of a probiotic (suggested by her paed) and a new multivitamin. I called the company who makes the probiotic to make sure there weren't any added carbs and they assured me there is nothing aside from what is listed on the bottle. Today was the first day I gave her the vitamin, so that can't be the problem. She's been seizing like this for days.

I also had a lengthy discussion with one of the GI nurses about the amount of mucous in her tummy. She is puzzled about it, but at least she offered up some potential reasons. It could be that some of her meds are contradicting each other and creating a "gelatinous blob" in her belly (for lack of a better description). It could be because her secretions are increasing and somehow contributing to the problem (I forget how). It could be from scar tissue around the g-tube inside her belly that restricts the formula (another long reason I can't remember in detail). Great memory, huh?! :)  We hung up the phone agreeing that I would get in touch with her pharmacist to discuss the potential medication issues and go from there. I don't see any cut and dry answer, so anyone's guess is as good as mine.

I'm having another issue with the insurance company :/  They are arguing charges for her wheelchair seat that they previously approved. What kind of idiotic company approves a wheelchair frame but not the seat?! They will do anything they can to avoid paying for it, claiming it is a custom seat (it is, but that is because of her scoliosis and complete lack of tone). Mind you, this is from JUNE of last year! Unbelievable. So, not only do I get to battle these awful seizures, I now have to begin what will probably be a long and painful fight with the insurance company. It seems that the company who I am dealing with (the wheelchair company), sees this often from all kinds of insurance companies. It is unnerving, unnecessary, and UNBELIEVABLE! I had plans to purchase additional durable medical equipment that she also needs, but now I know how much of a problem I will get when I need them to step up to the plate. This sucks!

We are also still waiting on the completion of the house. We're getting there, but each day I get more and more antsy about our move-in date. Fingers crossed it's sooner rather than later...!

Another great start to another new year :( 
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2 comments:

Angelkeeper said...

I have always said the grief caused by getting support and equipment for my children is worse than dealing with their problems. [well not really worse but it makes things 100% more difficult].
It is so exhausting dealing with it all. The trouble is when you do finally get around to getting the wheelchair Jade will have probably outgrown it.
As for her mucously tummy...have you checked she doesn't have an impaction in her bowel?

January 13, 2009 at 3:38 AM
Kelly said...

I am so sorry taht you are going through all of this with her wheelchair - UGH! I pray everything gets worked out - with the least amount of headaches!

January 17, 2009 at 7:22 PM

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Our peanut in a nutshell...

Hi everyone! Thanks for visiting my blog. My name is Jade and I am currently 8 years old. I have a big sister and a big brother whom I love very very much.

I have a very rare neurological disorder that isn't even named yet! It is a genetic mutation called CDKL5. It is considered a variant of Rett Syndrome and presently, I am only one of around 600 or so children in the world documented to have this mutation. Each child is unique in that his or her symptoms vary quite a bit. Unfortunately, I am one of those children who is affected much more severely than most of the kids.

Some of the problems I face include:

Reflux (in October 2006, I had surgery to have a Nissen Fundoplication done and to have a gastrostomy tube inserted for feedings). As of March 2012, I have a GJ tube for continuous feeds.

I am hypotonic - I have virtually no muscle tone and I find it difficult to even hold my head up on my own.

I have cortical vision impairment - my brain doesn't process the images it sees. Sometimes I see off to the side, sometimes, my vision is shuttered, sometimes I don't have any vision at all. The doctors and my Mom and Dad don't really know how or what I see because I can't tell them.

I cannot talk nor communicate with gestures.

I cannot walk, nor will I ever walk.

I grind my teeth. So much so, that some loosen during seizures.

I cannot grasp objects or use my hands for the simplest of tasks.

I cannot sit on my own. I can, however, sort of roll over from side to side.

I am choreoathetoid. I cannot control the jerky movements my arms and legs make.

I have life-threatening seizures every day. This is my greatest challenge.

So, now that you have gotten to know me, please feel free to take a stroll around my blog. Some of it you read may seem depressing, horrible, unfathomable, and downright crazy. But, this is my life.

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