I really hate waiting

>> Wednesday, November 14, 2012

I have mentioned before that it will take about a year to know if the Leucovorin is helping Bug. A year.

I ruminated on this today a little. It was a simple statement I made that brought it home with a vengeance: I HATE waiting.

For 6 years we had no diagnosis. We heard idiopathic so much that I started getting pissy with any Doctor that said it. Yes, me, pissy. Who knew? My standard answer was: I don't believe that. It's a cop out. What you mean is: We DON'T KNOW. It's OK not to know, just don't give up trying to find out. Don't hide behind that easy term.

So, for 6 years, we threw every idea we had at them. Here's a little list of things they had to tolerate:

Benign Rolandic Epilepsy
Landau Kleffner
Lennox Gestaut
Angleman's Syndrome
West's Syndrome
Dravet variant
Diabetes (that was an easy one to rule out)
Low Glucose in CSF (Cerebral Spinal Fluid)
High Protein in CSF
Auto Immune Disease
Hypothalamic Tumor

And of all of those they tested for everything BUT the CSF levels and Auto Immune.

If they had, we would have had a diagnosis when he was 4. That's right, 4. So many years wasted because of arrogance or ignorance, and I can't decide which is worse.

We waited, and we never gave up trying to find that answer. Idiopathic was not allowed.

Then we found it. And now, we wait again.

Wait, wait, wait.

I waited for him to be born, I looked forward to waiting for him to grow up, then I had to wait to see if he would have another seizure or was that first one a fluke? We waited to see Doctors, we waited for test results, we waited to even have the tests performed (6 months for an MRI in California), then we waited, holding our breath for his first medication to kick in. That took 3 months to reach the therapeutic dosage, all the while, waiting to see if he would have a life threatening reaction (Truly, the medication could have killed him. Aren't AED's lovely?). We waited to have the genetics test to see if he had any of the 'Big Ones'. We heard: We need to wait for Genetics to catch up to him, we KNOW he has something genetic but we can't yet identify it. And once, in the hospital, we waited to see if he would recover or if he would crash and die. It was after that time that we got the test he needed and then we were told it was normal. When it wasn't.

A year later, we had the results and now, we wait another year. We are 6 months into treatment and it still may take longer to know.

I really hate waiting.


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