Wednesday, April 6, 2011

Tunnel with no light yet


The seizures continue...Zach has been diagnosed with infantile spasms. These are seizures that don't respond to regular seizure meds, so he is currently taking a drug called Acthar. It is definitely not a "clean" drug. It has many not-so-good side effects, but according to the doctor Zach will hopefully only need to be on the medication for a short term. The goal is that this med would quickly eliminate the spasms and the EEG pattern that is connected with it.
Because of Zach's heart condition, our neurologist is choosing to start with a low dose and work his way up. So far we had not seen a whole lot of changes in the seizure activity. We have been on the medication for a week now. Oh, and did I mention that it is an intramuscular injection administered daily by Yours Truly? It really is amazing what a parent can learn to do for their child.

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