Sometimes Type 1 Diabetes gets in the way of Autism and Autism gets in the way of Type 1 Diabetes. Today, Epilepsy took center stage. I try to keep things in little buckets and only think about one thing at a time, but occasionally that does not work.
Like today. Keira had a Neurologists appointment at 10:30 and Kailyn had a Diabetes Appointment at 11:30. Then, Keira has her ABA teacher come to the house every day at 12 noon. I had to choose and Autism/Epilepsy won by default. Kailyn has NEVER needed a referral to the Endocrinologist nor have we had to pay a copay, but apparently we now do. I learned this when I opened a bill from her last visit on Saturday. Maybe too many children with Type 1 Diabetes are going to the Doctor so they can get their medicine and supplies to LIVE. So, they decided to crack down on that. I mean really, a documented Type 1 Diabetic NEEDS a referral to get info on how to live and prescriptions to keep her alive? SERIOUSLY?
The Neurologist appointment was normal. We talked about her seizures, looked at a recent video I took and talked about medication to keep the seizure monsters out of her brain. Then came the news that her genetic deletion has now been linked to Epilepsy. She is no longer considered a Child with Benign Epilepsy. Now, she is considered to have Early Onset Epilepsy. All because of this gene mutation. I have to admit, I am taking it hard. Benign means she would outgrow it. Early onset means it is with her for life. I can't find much info on it either, which is frustrating.
However, I am trying to take it with a grain of salt knowing that the research on the deletion is in its early stages. And frankly, Doctors DO NOT know everything. It is a science. If they knew everything they would be able to tell us what the heck was going on! In my opinion, she has a form of Developmental Delay/Epilepsy that does not have a name yet. We go to Children's Hospital Boston in April (I have had this appointment since December) for a second opinion from an Epileptimologist that specializes in child development. They are ranked #1 in the nation. She may say the same thing, she may not. But, at least we are doing all we can to help our child meet her fullest potential in life.
OUR FAMILIES JOURNEY: OVERCOMING A DIVERSE AMOUNT OF LIFE'S CHALLENGES. Type 1 Diabetes, Autism, Epilepsy and G-Tube Feeding.
2 comments:
Docs for sure don't know everything. And all they can ever work within is limited knowledge of OTHER people they've read about. Stats, numbers.
I had to realize this after cc's diagnosis. Even the docs themselves told us it's basically guesswork at some point, as each person is so hugely different and full of surprises and amazing things :)
This is what I hold onto. He could only come up with one study, but I know they have more. Of course the one he showed me was the worst case scenario (rolling eyes)
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