Hopkins Update

Ok...so here is the deal. Charlie Claire is having infantile spasms which are not so good, we most certainly want to stop them as soon as possible. There are about 3 things that could work in stopping them...1-ketogenic diet which this dr thinks she has been having them for too long for the diet to work 2- steroids- this has about a 70% chance of working but there are side effects (bloating, irritable, etc) 3-another drug which I can't remember but that causes some serious vision issues so we are going to wait on that. We are starting the steroids tomorrow. If there is no improvement in 2 weeks then we will basically be buying our time till surgery. When I say improvement the spasms need to stop - right now she is having about 24 clusters a day an each cluster has about 10-28 spasms. So even if it drops down to only 3 a day that still isn't good enough.

Surgery...they would like her to make it to about 6 months old before the surgery. Since she will still more than likely be having the subclinical seizures she will most likely need the surgery even if the steroid stops the spasms.

It appears that there is a little part (an 1/8) of her brain that didn't form properly and that is where the seizures are coming from. The good news is the rest of her brain looks perfect! The motor strip on the left side of her brain shouldn't be affected and therefore she will have good use of the right side of her body. The main issue will be the vision--the right side of each eye will be affected.

I'm submitting this post through a text message so I apologize if this is a hot mess but if I missed anything I'll add more later!

We are on the road heading back to VA so we can give Jackson lots of kisses.