Felbatol

As most of you know trying to control Tommy epilepsy was impossible. We would give him medicine and the seizures would stop or slow up for only a brief period of time, only to return full force, seizures were daily occurrences. Often Thomas was hospitalized to change drugs. During a hospital stay, when we thought we had his seizures well controlled, he was hooked to an EEG for more then 24 hours. Throughout that EEG, it was well documented that there were only 3 times went he went more that 8 minutes between his seizures, most of the time he was having one seizure after another. How is he to learn anything with seizures relentlessly interrupting his concentration?
After trying every anti-convulsive on the market, we even tried ACTH steroid injections. Nothing worked well, until 1993 when the drug Felbatol was introduced. Two days after starting to take this drug, Thomas seizures dropped and his awareness and responsiveness increased. He became more aware of his surroundings, more responsive, started showing likes and dislikes. It was wonderful until….
The following spring/summer, warnings were flying about this drug, Felbatol and it causing aplastic anemia, where your body stops producing new blood cells and caused people to die. Doctors were advised that their patients should stop taking the drug. I begged, I pleaded to keep my son on this drug. I wanted quality of live over quantity. Most doctors believed that the constant seizures would take his life anyways.
Fourteen years later Tom is still taking Felbatol for his seizures with great achievements and very few seizures; we believe without that drug, he wouldn’t be here today. But there are too few people on the drug to know about its long term use and its fatality rate or to identify those factors. So it is not known whether or not the risk of developing aplastic anemia changes with its use.
This is where I need your prayers, lately Tommy has been going through stages, were he’ll go for a few days to a week or more and bruise easy, be pale in color, sleepy and look terrible and then he gets better. This are signs that he maybe developing aplastic anemia. On the 10 of December we are seeing a blood specialist to have this check out. Let’s just hope it’s an enlarge liver or something treatable.