I'm sure the Neurology secretary is quite sick of hearing my voice on their voicemail, but I was calling the Dr. all the time!
Monday was a Neuro appointment. We changed the dosing of the Vaproic acid to give more of it later in the day and less in the morning--in hopes to ward off the sleepiness that always seemed to present itself in the a.m. Additionally we cut the Carnitine dose roughly in half. Also, we had the blood levels drawn for ammonia and Carnitine.
Well, I was really hoping for some magical results. Instead, I had a boy that kept wanting to sleep all the time, vomit frequently, and seize! Not good.
Calls, calls and more calls to the Neuro. Ammonia levels for Brock came back on the high side, but not bad. Doc didn't think that was the problem. The Carnitine lab results were not back for a few days, but we were told to go ahead and discontinue that med and see what happens and come in for an appointment Friday.
By the end of Friday's appointment I was exhausted. We went through day by day how Brock was....discussed future options, etc... Carnitine level was 100 so FINALLY we found the evil nemesis making B so sick. Leave it to Brock to have an unusually rare situation....
Carnitine naturally occurs in the body, but sometimes supplements are needed when taking Valproic acid to combat side effects. It helps the body metabolize ammonia and actually can raise platelet counts. So, if Brock can't have the Carnitine, he can't stay on the Valproic acid........
The plan of attack is to see how B is after 2 weeks off Carnitine, then draw some labs and I anticipate we will step down from the Valproic acid while introducing a new seizure medication. I'll update when I know more details.
For now, I am taking one day at a time and Monday was a good day for Brock! No seizures and no vomiting! However, Brock thought he should party most of the night Sunday. He was awake more than he was asleep---so that means mommy dearest was up too. (The coffee pot was working overtime!)
The weather had been so warm and sunny, but recently turned cooler with rainfall. I prefer the sun and warmth and hope it returns soon!! With Brock keeping me on my toes so much, I have not had time to put in any garden nor tend to my flower beds! I'm just lucky to get the yard mowed it seems.
I did get a nice opportunity to get some pics of the trio in front of their Triplet trees and spring flowers. (I'm loving my new little point and shoot camera--the newest Nikon coolpix, S8000.) Enjoy!!





1 comments:
Peggy, the last pic of Brock is so special. That's the happy boy we like to see! Avery & Cora are sure cute too.
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