....Or maybe there is no cure, and that's where the problem is. On Wednesday I took Mark on a three hour trip to the neurology clinic at the Alberta Children's Hospital.Since our car accident in 2001, Mark has been profoundly disabled and has had a history of seizures. For the last 5 years, his seizures have been very well controlled through the Ketogenic diet. He has been seizure-free, in fact, for the last year, as well as for other long stretches on the diet. Prior to starting the diet, he had 30-100 seizures/day even with multiple medications.
Anyway, until I went to this appointment on Wednesday, things were going pretty well for Mark. The medical people feel that it is now time for Mark to come off the ketogenic diet, as long-term it causes various side effects including low bone density. So the plan is to wean the diet, beginning after Christmas, and if (or when) he starts having seizures again, to try a variety of medications he hasn't tried yet. In the meantime, to assess where he is at, there are multiple tests and referrals.
For example, they requested blood/urine tests. I took Mark yesterday morning to the lab fasting, as required for these tests. They wanted 7 vials of blood from my poor little boy and after being there for over 1 1/2 hrs (and we hardly waited in line) and after going through 2 veins, and looking at length for others, they only got 3 or 4 vials, and we have to go back again. This whole time Mark was screaming and Preston wasn't too happy either.
Next we will have a bone density scan, an EEG, a referral to Cardiology in Calgary and most likely Endocrinology. Then the diet will end and the seizure battle will most likely begin.
I wonder if I should have spent Wednesday at the mall.
Anyway, until I went to this appointment on Wednesday, things were going pretty well for Mark. The medical people feel that it is now time for Mark to come off the ketogenic diet, as long-term it causes various side effects including low bone density. So the plan is to wean the diet, beginning after Christmas, and if (or when) he starts having seizures again, to try a variety of medications he hasn't tried yet. In the meantime, to assess where he is at, there are multiple tests and referrals.
For example, they requested blood/urine tests. I took Mark yesterday morning to the lab fasting, as required for these tests. They wanted 7 vials of blood from my poor little boy and after being there for over 1 1/2 hrs (and we hardly waited in line) and after going through 2 veins, and looking at length for others, they only got 3 or 4 vials, and we have to go back again. This whole time Mark was screaming and Preston wasn't too happy either.
Next we will have a bone density scan, an EEG, a referral to Cardiology in Calgary and most likely Endocrinology. Then the diet will end and the seizure battle will most likely begin.
I wonder if I should have spent Wednesday at the mall.
Say a little prayer for Mark--he could use it.
2 comments:
We are praying for him. We love you guys.
You're all in our prayers! Keep us posted!
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