A surprise - for some.

>> Monday, May 15, 2017

Last November, when Bug was in Hospital I asked repeatedly for an endoscopy. I asked for it then because he was heavily sedated and miserable anyway so why not have him recover there? BUT, we deferred to staff and waited.

On May 1st we took Bug to get that endoscopy. You can read about it here. It was his second time sedated in a week and I was not happy about it but we roll with the punches and appreciate what we receive (All blah blah blah...I am still a tad pissed but also happy it is over).

On May 12th, we met with his Geneticist. In those 11 days Bug had a disgusting amount of seizures and then, on May 9th, he had 4.

May 10th, another 4 and May 11th he had 3. All this last weekend, while asleep, he had no more than 3 a night. And last night he only had 2 and that was as he was waking up.

Could this be a new pattern? Hell yes. Yes it can. And what do we attribute that to? His stomach healing.

We believe that, as the medication began to help his stomach, his seizures reduced. For now anyway. Upon researching the medication we found that it takes 7 -8 days to start being effective. For Bug, because we stopped the med for a day while he stabilized some (he was SOO tired which was contributing to his increase in seizures at the time, that we had to rule out it was the stomach med making him tired) on the 7th day of taking the medication we started seeing the reduction.

So, I point this out to his Geneticist, who was intrigued. Welcome to the WTF BUG? Club. When I mentioned the endoscopy, he pulled up the report: all 5 biopsies were normal. Hooray! Wait? 5? Damn.

Then I mentioned the MRI and he pulled that up to. Remember that MRI? The one that was normal? Well, the report stated, very clearly, that Bug's conus (the end of the of spinal cord) terminates at L3. I read it 4 times. L3. We thought that it terminated at L4 or L5 but we definitely knew it was at least L3. They agree: L3 and THAT is a low-lying conus and a sign of a tethered cord. Another sign, only this one is blinking neon. Another: WTF BUG? moment.

I also mention the reaction to caffeine to which the Dr raised an eyebrow and I said: I know, we will bring up stimulants to his Neuro. More conversations about stem cell research and KBG and we ended we with me walking on air. Things are moving for Bug, in a possibly good direction. Boston Children's called and got us an appointment for May 23rd for their tethered cord clinic. I sent them a message a little bit ago and look at that: getting a second (make that third or fourth) opinion next week. There are a few other fine folks looking at his records, specifically his MRI and we will see what THEY think about normal.


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Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

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