>Siena saw Dr. Gottlieb this morning for the “seizures” she has been having. The diagnosis is Complex Partial Epilepsy/Seizures. I found a good link to describe this http://www.bbbautism.com/complex_partial_seizures.htm. He gave her a prescription for Trileptal which will hopefully control the seizures, if it does not, then he he suggesting a 24-hour Ambulatory EEG – http://www.epilepsy.com/epilepsy/eeg_ambulatory.
Siena may grow out of this, but if it is due to Prader-Willi then it is unlikely that she will. Gottlieb said about 25% of people with Prader-Willi have seizure activity. He will see her back in a month to see how medication is working… we are waiting to hear from pharmacy and insurance about whether medication will be covered at all…
Also, Gottlieb said he had two patients during his training with Prader-Willi, but none since… again proving how rare it is.
>I hear insurance will not cover the medication. My question to the doctors is what is the possible harm this could inflict on Siena? And if there is a potential for harm then I want to know who the insurance company is and they will regret hearing my name. Also can the medication be sourced from Canada? Because the stuff from Canada is the same as we can get here but a lot less expensive!
>I called the company that makes trileptal and they have a patient assistance program. That may also be an option.
>Good stuff Becky! We have only begun to fight!