2004-08-19 Emily Update

I discussed with the doctor the various concerns I had(her mood/personality change, wetting the bed etc.) and he decided that a medine change would be best. He feels that her wetting at night could in fact be seizures, especially since the bed wetting was never a problem before.

She will be starting her new medicine tomorrow. It is called "Lamictal" and as well as treating seizures, it has been documented to have a positive effect on the mood.

I am a little nervous about the change for the following reason:

The only side effect (or only major one)is a rash, which can in fact be life threatening to someone under the age of 16, as well as someone who is on valporic acid(which is the technical name for her current medication, Depakote).

Because of this, and because she can not just stop the Depakote cold turkey, the new medicine is being introduced gradually, starting at 5 mg for the first week, and increasing to 25 mg over the course of 5 weeks. During this time she will continue with the Depakote and, provided that there are no problems after the 5 week trial run, the Depakote dosage will be reduced and eventually stopped altogether.

I also discussed with him information that recently came to light when discussing Emily's condition with Ryun. He remembered a time when he was younger( about 5 or 6 years old) in which he was having such severe behavior problems that his parents took him to the doctor. It was decided by some means that one part of his brain had not developed as quickly or as fully as the other. He doesn't remember exactly how this diagnosis was reached (what testing they did to determine this) and unfortunately, his pediatrician has absolutely no record of Ryun ever being a patient there. Great.

Anyway, Emily's neurologist told us that a new clinic is being formed between Children's and Beth Israel that will be studying exactly the condition that Emily has. He also said that given how otherwise healthy Emily was given the fact that most people with Emily's condition usually have severe disabilities, the doctors involved in the study would probably take a special interest in her. He also reccomended that Ryun accompany us to her first appointment with docotrs in charge of the new clinic so that they can determine whether or not it may be beneficial for Ryun to have an MRI as well. This could of course establish a genetic connection and possibly shed a little light on Emily's "vague" diagnosis.

So, that is where we stand at this point. We have an appointment set up for the end of September to see how the medicine is working and to determine if this is the right course to take. I should be hearing from the clinic soon to schedule and appointment to meet with them as well.