Here the nutz and bolts of the last three weeks.
Abigail has started having seizures again...mild at first with one per day. By this last weekend they were up to 4 per day and pretty severe. We also saw regression in alot of her previous less than charming behaviors.
However yesterday she only had one set, she was a little charmer all day today and maybe had one or two really small sets tonight.
All I can say is What the Frak! (if you can use that word on TV then I am going to use it here)
We are at loss as to what the issue is and what could be causing it, only speculation and guesses.
Her prescription writer...sorry neurologist... is at a loss and offered up more drugs for us to try. Such is the joys of Idiopathic Epilepsy. "We don't know" the doctors say "Lets try this drug with this drug and see what happens" they add.
Over all Abigail is great, she continues to improve her language skill set, we lowered her calorie intake and she is hungry at meals, the down and dirty meal battles are at an end for now, and after a week off from school was very excited to see all her friends.
I promise to not go so long with out a post again and the next one will be a little less frustrated in tone :)
2 comments:
It seems so illogical to try another drug when all studies say they're unlikely to work if you've already failed 3 drugs. Argh! You KNOW the diet works, even if it needs adjusting.
Sorry, I don't know this just makes things worse. I wish I had answers for you!
And honestly, you manage to sound a lot less frustrated than I know you must be.
I'm so sorry that Abigail has had such a rough time of late. I do hope that these seizures level out for her.
I am finding that the diet seems to change how medications are working. We had pretty much given up on Keppra for Grace but the neurologist didn't want to wean her off it totally. We never saw much difference in Grace if she had the Keppra or not. It never seemed to be working. Since Grace started the diet, she is dependent on the Keppra. If she is late with a dose, the myclonic jerks kick in. This is new post-diet. Some of the other families in our program report a similar observation.
Marie
Post a Comment