Update

Dear Son continued to sleep through the night on the new dose of medicine however he also began sleeping through the day as well. As a result of the increased meds, his EEG did not show any seizures, although it did show abnormal activity. Since that time, they have reviewed his seizure meds and decided to remove the Phenobarbital. The Phenobarbital, causes the other medicines to metabolize faster. Once they remove this, the drug levels of the other medicines should increase and therefore they will be able to reduce his overall number and quantity of medications since it will take less medicine to attain a therapeutic level. It will take approximately a month or so before that drug is out of his system and around three months overall to adjust the other medications. In the interim, removal of this medication may cause some breakthrough seizures during this time. As a result, they will be keeping him there a few more days as we begin this process.

One of the questions that I had was that Dear Son is a hyperutilizer of his medications and I was curious as to how much of the hyperutilization as due to Dear Son vs. the Phenobarbital. They aren't sure so we'll have to wait and see. (Because Dear Son hyperutilizes his seizure medications, it's important to get "trough" levels.)

We made the first changes yesterday and he seemed to have a pretty good seizure this morning. I suspect as we decrease these medications he will become more alert.

As a follow up to a previous post regarding the school bus accident and aide for summer school, I met with the Special Education Cooperative and the School District Representative yesterday and the IEP has been formally changed to allow for an aide for him on the school bus. In addition, they will also request an air conditioned bus for both the normal school year and summer school. They had no problem with either request.

I probably won't post again until possibly this weekend unless we leave the hospital sooner.