Felbatol

Since 1993 Thomas had been on the same seizure medication and taking the same dosage of the drugs. As of yesterday we’ve increased his dosage. I can’t tell you how happy this makes me. Not that we’ve increased his dose, but how long we have been able to go on the same drugs with few seizures.

Thomas was born in March of 1986 after a full term uncomplicated pregnancy. He was 6lbs. 12oz and was diagnosed with hypoglycemia at birth. He had a seizure 2 days after birth. He stayed in the NICU for 2 weeks and we were sent home with him on Phenobarbital for seizures. Since his birth we have never really had another sugar problem.

After much testing and many doctor visits by 3 months of age, we told Thomas was normal and we were to wean him off the Phenobarbital. By 5/6 months of age Thomas wasn’t hitting any of the milestones that babies are suppose to hit. He would about every 3 or 4 days do these full body jerks like he was trying to do a jackknife off a driving broad. This was a terrible and frustration time for I started trying to convince doctors that there was something wrong with my child. I took Thomas to any doctor and specialist I could find. Once I even made a doctor cry, she told me to join a support group; I yelled back “a support group for what??? You won’t tell me what’s wrong with my child”

After Thomas was more then a year old, a miracle happened, a doctor looked me right in the eyes and said “Your son has a serious seizure problem, I’ve seen him seizures many times in your short visit here. I hate to tell you this but he’s probably severely mental retarded too, and if you need a label for him to get some kind of help, I’ll label him with cerebral palsy today.” I smiled, for I knew there was something wrong and I wanted a professional to tell me. The doctor wanted to know why I wasn’t crying over such sad news.

Trying to control his 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 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 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 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 summer, warnings when flying about the drug causing aplastic anemia, your body stops producing new blood cells and people were dying. 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.

14 years later he is still taking Felbatol for seizures. Thomas has changed a lot over the years. I am happy to say that I don’t mind an increase in dosages. A seizure free Thomas makes for a happy mom.