My Aunt Bette posted this link on Facebook last night.
Bozeman boy works to overcome undiagnosed syndrome.
I promised Kristie, James' physical therapist, that I'd post it on here. Unfortunately, I don't have the time right now to give this post the attention that it truly deserves. Sooo ... I'll be back to update my thoughts on this soon! To be continued...
...Sigh. I just finished updating this post and, alas, the whole thing erased. No more time right now. I'll attempt it again later ...
A neb, a nosebleed, and a coffee (for me) later.
Third time's the charm ...
Here goes.
People ask a lot of questions about James and that's ok. Most questions are good questions. By "good question" I don't mean complex. A good question is one where the asker really cares about the answer. I've found that some people just ask questions to be nosey and don't really listen to your answer. They're too busy waiting for their next chance to talk. If a person is willing to truly listen to the answer, care for the individual directly involved as well as those indirectly affected, and take no joy in another's misfortune or poor happenstance then you, my friend, can ask me anything you'd like.
It's not always other people asking us questions. Mike and I have asked a lot of questions of ourselves as well.
-How did this happen?
-When did this happen?
-Is it because I threw up my prenatal vitamins when my morning sickness was bad?
-Was it the labor that started at 29 weeks?
-What is "this" anyway?
-There's no diagnosis?
-ARE THERE OTHER KIDS LIKE JAMIE?
It's not all questions in our lives, although there are a lot. We do have many answers too.
-Do we love James? More than anything.
-Would we trade him? Not for anything.
-No diagnosis? We'll find one.
-Other children? We'll find them.
-Did we cause this? Blame fixes nothing. We didn't do anything "wrong".
-Will our marriage survive this? No doubt. Yes.
Thanks to the answers that we do have, we'll make this work.
The answers that we receive from doctors are usually a little bit different. They seem to be ok with seeing James as a bunch of different symptoms and not looking at the big picture, one main syndrome. They don't have that big answer for us but I'm not going to let up until I find it. Here are the syndromes, illnesses, afflictions, etc that I've been told are not causing James' struggles:
-Down's Syndrome? No.
-Autism? No.
-Metabolic deficiency? No.
-Tourette's Syndrome? No.
-Angelman's Syndrome? No.
-Spina Bifida? No.
-Cancer? No.
-Brain tumor? No.
-Anatomical abnormality of the brain? No.
And his current diagnosis is:
-Epilepsy. Yes.
That's it.
However his list of symptoms, which for some reason do not match an actual diagnosis are:
-Seizures
-Hypotonia
-Global Developmental Delay
-Ataxia
-immaturity of the optic nerve
-GI constipation due to neuralgia
-Asthma
How can he require a neurologist, epileptologist, genetisist, dietician, gastroenterologist, opthalmologist, ENT, physiatrist, and a PCP, and there be no correlation? Wouldn't it be more reasonable to believe that there's one main cause for all of this than a myriad of random, sporadic symptoms? A syndrome versus symptoms?
A lot of questions and really, no one to answer them. It's very frustrating. Most people can sympathize but no one to empathize. There is no other "James".
Until now.
When I read this article I was glued to it from the opening line. Usually something jumps out at me and I think "Nope. Not James.". Not this time though. The seizure occurrence is different but, I don't know, I felt something in my gut. I sent an email to the author of the article with my contact information and I also found the little boy's father on Facebook. I sent him a message. What have I got to lose? Nothing. But, boy is there a lot to gain. Someone to talk to. Someone to listen to. Someone to bounce ideas off of. What have they tried? Where have they gone? Which doctors have they seen? What works? What doesn't?
And most importantly, James will know that there is someone else, just like him in the world. There's comfort in knowing that.
The most important things in the world are love, hope, and knowing that you're not in this alone.
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