I just want everyone to know that I am a plumber I do not have any experience in blogging.
With all the medical problems mito had caused Grace, the epilepsy is by far the most serious.
In the beginning Grace would have multiple small seizures a day probably 5,6,7 of them, but they were mild. Her mitochondrial specialist had warned us that she would probably develop epilepsy. We had no idea how severe the seizures would become.. We saw an epileptologist who started grace on Keppra a seizure medication,the dose prescribed really had no effect and the doc. kept increasing the dose ,eventually we were at a maximum dose of keppra and the seizures were still happening, maybe slowed a very little.
Eventually the doctor would prescribe another seizure medication called trileptal,we started on a low dose and began to increase the dose as time went on the seizures seemed to be less and less,however they began to be more severe,going from still conscious to non conscious and lasting longer than they were before starting the trileptal.We were going from 5,6,7 a day to 1 a day,these seizures began to become so severe Grace was prescribed Diastat a seizure recovery medication because the seizures would last sometimes 5 to 10 minutes.
We see a mitochondrial specialist here in Dallas and decided to make a trip to see another mito specialist in Huston.It was a good doctor visit and before leaving blood work was done.
Two days after getting home the doctor called and instructed us to rush Grace to the emergency room because her sodium levels were very low and were at extremely dangerous levels.
In a panic I rush home from work and we rush Grace to the e.r. her sodium levels were at 122,the normal range is 135 to 145. They start her on an iv to get her levels normal,it was decided that the trileptal was causing her levels to be low and they took her off the iv and lowered her dose of trileptal and her levels began to rise to the low 130's ,but still below normal.Yes lowering her trileptal increased her seizure activity, so the doctor prescribed another medication called Bansol, now Grace is on three different seizure medications, the doctors goal is to get Grace off the trileptal and then check her sodium levels.We are in the process of lowering her trileptal and I believe it is causing increases in her seizure activity.We have been down to about 1 to 2 a week with all three medications .
A few questions :
When are seizures under control ?
What frequency of seizures are acceptable?
Is 0 seizures a realistic goal?
Does anyone feel like the weather can cause seizures?
When you cant get an apt. with your epileptologist for 6 months is it time for a new one?
Seizures are the worst because there is nothing me as a parent can do just comfort her and hope that it stops.
As a father i need to be able to stop these from happening
I am here to protect her from everything and anything , if I could just get my hands on this mitochondria so i could fix it,make it better!!!!
The human body what an incredible design.