I hadn't realized that it has been so long since my last post.
Rayleigh is now taking 1/2 pill of Clobazam in the morning and 10ml of Phenobarbital at nighttime + 1 full pill of Clobazam.
She has been on this Clobazam dose for about 3 weeks. We are seeing a decrease in seizure activity but not as much of control as we would have expected by this time. Bug is having 1 seizure every 2-3 days now. The past couple weeks she went 3 days with a seizure each day, 3 days with no seizure, 2 days with a seizure each day, 2 days without, and then she had a seizure today at naptime. There seems to be no pattern and no explanation.
We have called Dr. Coleman's office and left a message to see if there is any blood test that he can order (or have Dr. Hernandez from Cook Children's Hospital order) to check her Clobazam levels. Rayleigh is growing like a weed so we need to find a way to keep on top of her Clobazam dose increase.
If we can get them better controlled soon we will be looking into the Ketogenic Diet.
On the plus side, Bug is making excellent progress in her development. She is using her eyes much more and getting really good and watching what we put in her hands and tracking us. She is still not sitting independently yet but she is getting closer. She is, however, standing at a table or the couch all by herself!
The last blog post left off when Bug starting having seizures each day again. She was having one seizure a day. They were becoming unsettlingly routine; every day about 15 minutes into her first nap long nap of the day.
Though the seizures remained fairly mild, we worried every day that they would get more intense and start to become painful to her.
Over 2 weeks ago we spoke with Dr. Coleman and he reinstated that he really did not believe the dose decrease of Phenobarbital by 1ml a night would cause such a drastic breakthough and so quickly affect her seizures. He said that if the Phenobarb decrease was the culprit that the seizures wouldn't start back for a few days after the first lower dose and they would start gradually, not daily at first.
Dr. Coleman suggested we call Dr. Hernandez (Rayleigh's epileptologist at Cook Children's Hospital) to see if it is time to raise the dose of her Clobazam. Clobazam is the pill form anti-convulsant medicine that we receive through Canada because it is not yet FDA approved.
We left a message with Dr. Hernandez's office about Bug's current weight and seizure situation and they called back that same day saying that Dr. Hernandez has changed her prescription on Clobazam to 1/2 pill in the morning and 1 full pill at night. This is based on her weight gain since the initial dose of 1/2 pill twice a day.
We started that dose that night. It has now been 2 weeks. She has been 2 days seizure free. We think that we will see a gradual decrease in seizure activity from this new dose of Clobazam much like when we first started the medicine. In the beginning of Clobazam it took her seizures down to 1 every other day, then 1 every few days, then 1 in 4 days and then they went away all together for several days at a time, until she had her breakthrough... most likely from her weight gain outgrowing the Clobazam dose.
We will have to continue waiting to see if this new dose is the key. Michael and I would still really like to get Bug weaned off Phenobarb completely to see if her developmental delays improve. Hopefully that is in the cards for her soon.
