Wednesday, March 4, 2015

Enormous Increase in Myoclonic Seizures

Mira had a massive amount of myoclonic seizures yesterday morning. From the time I was getting her dressed, until about 20 minutes before her bus arrived, she was having a seizure every 5-10 seconds. I was getting really concerned as no change in scenery or activity would stop them. We were a step away from keeping her home and giving her something to try and break the cycle. Over the past 9 1/2 years, we have only had to intervene (usually with Ativan) to stop one of these prolonged episodes.

When she does have one of these 'cycles' of seizures, she is breathing in between them, but when they are happening every 5-10 seconds, she can't really do anything with purpose, because the seizures just overwhelm and distract her to the point where she almost immobilized. Most days, in the morning in particular, she tends to have clusters of seizures, but very rarely to the extent and intensity that we saw yesterday. The cycle of seizures finally started to fade out after about 30-35 minutes.

The only change we have made over the past week is temporarily weaning and stopping her creatine supplementation. Mira has to give blood draws toward the end of the week and we want her to be at a baseline level when they run the GAMT testing. Having elevated creatine levels could render a false negative if she has adequate levels in her system. They are supposed to do an amino acids profile and blood work for a few other tests as well. Whether or not all of this recent spike in myoclonic activity coincides with stopping the creatine is purely speculation at this point.

Mira was fairly irritable at school yesterday and last night. She had an enormous appetite and ended up drinking almost 4 entire bottles before going to bed. I was afraid that some of her dinner was going to come back up after having so much to drink. She kept wanting more and more after the first 2 bottles, like she hadn't eaten anything all day. This morning she had a lot less myoclonics, but still was off and on irritable before the bus arrived.

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