Received the phone call from the doctor today. He explained that Cully's bloodwork showed an abnormality that triggers low blood sugar. The basis of the Ketogenic diet is to starve the body of sugar and for this reason the diet would not be safe for him.
NEXT ?
Cully will be starting the ACTH drug and will continue the VIGABATRIN while being weaned off the ONFI slowly.
The ACTH is an injection that we will give Cully at home after a thorough workup at the hospital. Julie and Cully will spend an overnight in the hospital while he begins the treatment. This is the enormously expensive drug that we were nervous about weeks ago.
Now we have another option to stop the seizures, not a moment too soon either..
Cully had a very bad day, or at least the first half was rocked with bad seizures from the moment he woke up. While I didn't see it Julie says Cully was downstairs for his morning meds and he began a hard cluster of seizures. He started calling for me and trying to climb the stairs to come to me. Julie tried to help but he would not let her and he worked his way right up to me on his own, seizures and all. Luckily they stopped when he got upstairs.
I took off early and Cully and Daddy got to hang out together...
Oh how heart wrenching. I HATE seizures. HATE HATE HATE them. And I hate that you guys are dealing with all of this. I understand WAY TOO well the toll it takes on your whole being. Individually and as a family unit. I hope you can feel the giant cyber squeeze I'm giving you guys right now.
ReplyDeleteACTH is a scary, hard core drug. And it only sucks even more that it's an injection. But I'm hoping like crazy that it helps Cully man out.
XOXO from chilly RI.
...danielle and gang
Thanks Danielle. We feel the cyber squeeze all the way here in Michigan. We are nervous about the ACTH but excited too that we have another treatment. All we can do is have hope right? We are all sending you warm thoughts, not that Michigan is much warmer than RI.
Delete