Tuesday, December 28, 2010


Despite illness, no seizures since Sunday! Before this illness, no seizures for a week! We're baffled, we're surprised, and ecstatic!
And we think we know why...
Due to Jacob being on a low calorie diet, he is constantly monitored to make sure he is getting his nutrients. In the fall, Jacob's protein level started to drop, and he also looked puffy in his face and body as he was retaining water.
We got introduced to the expensive powder - complete amino acid mix. The powder that no one wanted to pay or provide for Jacob, but that he needed to get up his protein level.
End of October, the dietitian wanted to double the amino acid. We didn't think much of it, and we could see how Jacob's "puffiness" started to disappear. We also noticed that he got easily constipated, and didn't pee as much.
We also started our fight against nightly seizures - sometimes once, sometimes several times a night - often putting him in status epilepticus. We started going back and forth to the ER, and also had two hospitalizations. And many, many medication changes.
The reason to Jacob's increased seizures were easily explained by his mitochondrial disorder. We know his epilepsy has worsen before. It made sense. It can happen any time.
Or did it make sense??? How could his medication level drop in his blood without medication changes? Jacob's nurses started to question the amino acid, and so did we.
We convinced the neurology team and Jacob's dietitian to cut his amino acid in half as long as we monitored his protein level.
Mysteriously within a few days of the amino acid change, we didn't see any seizures. The medication level in his blood is up again, and the seizures are gone. Even seizures we didn't treat in the past are gone. Gone like they have never been here before. Maybe we got a bit too much of the amino acid into Jacob's body. Too much of a good thing.
It doesn't mean that I think Jacob is cured from his epilepsy. It doesn't mean that his epilepsy can't easily be shaken by illness (like on Sunday), poor sleep, constipation, and many other factors in Jacob's life. But it also tells me that we always need to look a bit deeper into Jacob's overall picture before simply settling on mitochondrial disorder.
Jacob is still at Children's today. No real improvement from yesterday. Still struggling with thick secretions, high heart rate, and overall not looking great. Hoping that a couple of days of rest can cure this virus, and that we get to go home in time for New Year's.
Love, Maria.

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