Neurology Update

We didn't exactly get the information we wanted to hear this afternoon at the neurologist.  Truman doctor thinks that he is having Infantile Spasms.  Basically it was the worst possible potential diagnosis that he could have given us.

Infantile Spasms is a scary seizure disorder that affect children between 3 months and 12 months.  They typically "stop" by the age of 4.  I used quotes because the seizures don't really stop...the change.  They typically turn into an extreme epilepsy disorder that causes multiple types of seizures that are not easily controlled by medications.  The other big part of the Infantile Spasm disorder is the affect the seizures have on the developing brain.  Most children, and I mean 90%, develop decreased mental function.  We don't exactly know what that means, but the stories we have heard are not good.

Truman is going to have an EEG at 7:30 tomorrow morning.  The EEG will show if he has hypsarrhythmia, a specific marker brain wave pattern.  If he has it, he has Infantile Spasms.  If he doesn't, he doesn't.  Fairly straight forward.  If he does have it most likely he will be admitted to the PICU to start treatment.  The treatment is six weeks of a drug called ACH.  It is a heavy duty steroid treatment that is our only hope of decreasing the amount of damage to the brain and the intensity of the seizures.  It might or might not work...but it is the only hope.  Our doctor says that the quicker the seizures are controlled the better the outcome.  So we are moving as quickly as possible.

If he doesn't have the marker on the EEG we are back to waiting for the results from the genetic screenings.  Dr. LePicheon (the neurologist) says that the seizures have nothing to do with the low muscle tone or developmental delay that Tru is already experiencing...so the EEG won't provide an answer for that, but at least we will have an answer for something.

Here is a picture of Truman during his last EEG.  He was only a few months old and so damn cute.  It sucks that I have this picture...but I want to HOPEFULLLY show him just how strong he was as a baby someday.  I want to look back at these photos and laugh about the struggle we went thru and how everything has worked out in the end.  I want to show his first girlfriend pictures of his funny hat.  I want so many things...

 

Please send out some prayers and good thoughts for us tomorrow.  We have felt the incredible support through all of this and we need a bit more now.