Wednesday, September 08, 2004

One year later...

We begin the month of September celebrating another month of "stability" for Jenelle. The Lamictal seems to help keep away the grand mals since we haven't seen once since August 1! Unfortunately, the Lamictal is no better/no worse in controlling Jenelle's everyday seizures. After first starting it we had a wonderful 10 days of no-seizures, but then they slowly came back to her regular amount of daily myoclonics and absence seizures. The seizures are still shorter in duration, which is an improvement, but we were getting that much control on Topamax alone. Her six week trial of Lamictal ends next week on the 14th, so I'm sure we'll be calling UCLA again for instructions on our next step (i.e. next drug!)

Jenelle's special school was closed the month of August and yesterday was her first day back. She was getting some therapy at home during August, but not as much as before. It will be nice to see her back in a routine again. They said she had an awesome first day and were happy to see her back. She is using her stander well, and we (Mommy & Daddy) need to find more time to get her in it! In addition to waving "bye bye" she will now wave "hi" in response to a hello. Again it is very subtle, be we are seeing her respond to different verbal commands, so it is encouraging. Jenelle's hair has now grown enough that I can put it in 2 teeny tiny pony tails on the top. Brett didn't like it much (he prefers the one pony tail) but Grandma thought it was adorable! I’m sure we'll be seeing huge strides in this month as Jenelle is now back in her infant development program. That therapy is so important to her right now.

Jenelle had another blood test done yesterday. I did some research a few weeks ago and came across something called "Celiac Disease". In particular, I found a newspaper article of a child diagnosed with Lennox Gastaut Syndrome that was later found to be Celiac Disease. From my reading, Celiac Disease is an auto-immune disease that is rather common (1 in 100 have it!) It is an allergy to Gluten. Some of the symptoms of Celiac Disease that seemed similar to Jenelle include development delay, uncontrolled seizures, red rash (which Jenelle sometimes gets on her cheeks and we haven’t found a doctor yet who knows what causes it), and gasey bowel movements and abdominal pain. She does not have the most obvious symptoms of this disease which include stunted growth and failure to thrive. I called Dr. Patel and mentioned the article I found – it seems once this child was placed on a "Gluten free diet", his seizures stopped and today (4 years later) he is a normal little boy. She has some patients with this disease and agreed that Jenelle didn’t have all the symptoms, but there was enough coincidence there to at least run a blood test. I asked her Neurologists if she had ever been tested for this, and they said no – "Celiac Disease is a GI issue, and we are only concerned with the brain!" ;) We aren’t getting our hopes up as this is a real long shot, but I guess when your left with nothing but hoping for a miracle, you'll look anywhere for it! I'll keep you all posted on the test results.

And not to dwell too much on the past, but as you noticed from the subject line, it has been a year since we got the call from her Neurologist about her Epilepsy diagnosis. I'm proud of the way we've handled things during this past year. A year ago we couldn't even pronounce words like "Hypsarythmia" (hips-a-rith-mia), "Vigabatrin" (Vi-gaba-trin), Ketogenic (key-toe-genic), or "Gastaut" (Gas-toe) - but now were are old pros. We know more about Epilepsy than we ever imagined we'd learn, and I feel we are at a point of acceptance about what we are dealing with, and how to fight it. Is Jenelle any better than she was a year ago? Not really, except in the small improvements we've seen over time. Has her prognosis changed? No. But we love her completely, and we accept her as our daughter with all the potential that goes with it. I found a sippy cup in the cabinet yesterday that was a baby gift for Jenelle that she still hasn't been able to use. It had her name on it and the meaning; "Jenelle means God's Precious Gift!" How appropriate!

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