A Referral

We keep Dr. Coleman, her pediatric neurologist, updated on Rayleigh's seizures via e-mail and phone calls in between visits. So we called him while she was taking the Phenobarb+Keppra to let him know that her seizures and frequency hadn't changed. After 2 weeks of trying this combination he called to check in and we decided then to take her off the Keppra.

Dr. Coleman put in a prescription for Rayleigh to start taking Clenazepam. Clenazepam is a wafer tablet that dissolves in her mouth. It is used as an anticonvulsant, also can be used as a muscle relaxer. We have been giving her one tablet a day (at nighttime to reduce fatigue during the day) and she has been taking it very well. No side effects to report. We started the night we talked to Dr. Coleman, so Bug has been taking it for a week and a half now.

Dr. Coleman let us know that he received the results of the chromosomal analysis and the DNA test that we had blood drawn for last month. Both came back normal in regards to anything epileptic or neurological. There was a slight abnormality though. Bug has a gain, or extra material, on the P32.2 band of her DNA. This can lead to different cholesterol issues, but she shows no signs of that now and it's unlikely that this will ever turn into a problem based on its current state.

The biggest piece of information Dr. Coleman told me was that he put in a referral for Bug to go down to Ft. Worth, TX and be examined at the Cook Children's Hospital.

Cook Children's Hospital has a special, top ranked pediatric epilepsy center. One of the best in the country, if not the best!! While there, she will be seen by Dr. Saleem Malik. His page on the Cook Children's Hospital website is impressive. We look forward to meeting him and getting a second opinion from an epileptologist.

Rayleigh Bug will have a 3-day EEG done when we first arrive to Cook. The last day, day 4, she will have another MRI. They may not need to do this after they view the MRI she had done 3 months ago. The chances they will want to do their own is about 50/50. Their MRI machine is more powerful and will see more clearly and thoroughly into the brain. Her brain has matured since her last MRI so we think they'll probably want to do their own test. Other than that, she will have more blood tests done to check metabolic levels for Coleman and a few blood tests of their own. We will also talk with a nutritionist/dietitian and a metabolic geneticist.

As I'm sure you can imagine we are anxious, excited, nervous and ready to get this done. Hopefully we can get some answers out of this trip.