Tuesday, March 9, 2010


Okay, Mike faxed me the information on the drug. I hate information sheets on drugs with everything in my body, don't you?

It's called Felbatol. It's very effective for seizures, but it's effective as an add on drug with other medications.

This is my concern:

"Unfortunately a number of fatal cases of a plastic anemia, and hepatitis have been linked to this medication, and most physicians only prescribe it when other treatments have been ineffective. The most serious side effect is anemia, and liver failure." They suggest blood tests every two weeks to start, and then every three months following. The dug can also cause less serious effects like insomnia, and headaches.

I guess there isn't a seizure medication that comes without risks, but I wish there was. I am sure they give you the worst case scenario, but still. So the big question is do we really want to walk down this medication path. It's the old question, is it the disease that kills the child, or the fight from the parents seeking normalcy that kills them? GEES! To much for my brain to take in.

Mike and I will be discussing the pros and cons tonight.


Bronx Cataldo's said...

Has Jude been diagnosed with LGS? Because its one of the drugs used for LGS(Lennox-Gastatut Syndrome). Its a drug I would like our doctor to consider for Finnian but our doctor doesn't like giving it to children under 5 and the children have to have to weekly blood draws to check their liver function. The reason our docotr doesn't want Finny on it is because he has high GABA levels in his brain that can suggest hepatic disfunction so she doesn't want to add fuel to the fire. Have you considered the keto diet?

Sherry C said...

yuck sorry you have so much to worry about. Hopefully once he is on the meds for a while it feels less worry some. it's hard to be so aware of all the risks and the worst cases concerns.

I pray the drug helps manage Jude seizure he is past due for a break.