Abnormal test? The hell you say!

>> Monday, May 1, 2017

I started writing this post to detail the amount of times Bug has been refused testing and the number of times we have had to wait for results, beyond normal limits, that is. I was going to point out how his ABR was abnormal and recommendations were made to continue to look into possible hearing loss but once he had his ear tubes put in, another ABR was never ordered and hearing tests were called off because he couldn't follow directions.

I was going to post about how I was told NO to a lumbar puncture for 3 years only to get one, be told the results were normal, and find out a YEAR later that they weren't. That treatment was very successful for a remarkably long time.

About how his first geneticist recommended additional testing and how his Neurologist at the time said NO. Genetic testing that would have told us he had KBG Syndrome in 2009!

I could get into great detail but that doesn't help Bug.

Today, after requesting an endoscopy last November, he finally got one and he DOES have a problem: he has erosion in the top part of his stomach. This is, most likely, caused by his medications but a biopsy was performed to be sure.

Since he woke up from the anesthesia, he has had no less than 10 seizures, 2 while awake. This does NOT bode well for tonight. It all could have been avoided if they had done this test when he was in hospital in November, when I asked. But no, instead, we have three sedated exams scheduled in four weeks. He has seized after the first two, I can only hope he will do better after the last but what are the odds?

Really, I am hoping we aggravated his stomach and the meds that were prescribed to help his tummy will counteract some of this increased seizure activity. If not, this is really just going to be a long, long, long night.

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Seizure Tracker.com
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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