Latest @ the hospital

Ok so saying I was right doesn't make me feel any better, but
I WAS RIGHT!

Because she was in the hospital and because they did the EEG they found her seizures have progressed/evolved to a new form of epilepsy called Infantile Spasms. But its good that we caught it early, the doctors say. Buttheads... if it weren't for me being a pain in the ass how long would it have taken for us to figure this out.

On Thu, Aug 21, 2008 at 11:09 AM, Curt Reese wrote:
10:30ish - Dr. Hartman stopped in. He said the EEG suggested that her seizures have evolved into Infantile spasms. It is common for seizures to evolve and to evolve into infantile seizures. We are catching the change real early which is good. This is something she will outgrow. Often another type of seizure will take over later. Since she started with seizures early, he thinks more than likely she will have some sort of seizure after the infantile spasms go away. He was pleased with her responsiveness this morning. She is very smilely and even has some big open mouth show all her gums smiles often associated with large amounts of drool. The first course of treatment will be a much larger dose of Topamax increased over a period of time. Someone is going to write out that schedule. He wants us to keep him posted regularly on her response to the increase medication either via email or phone. As for when to call, we are to use her current seizures as a base line. If she does something increasing different that concerns us, call the on call. Otherwise, emailing him what is going on is fine or if we choose to call in an update that is fine also. If we get to a point in the Topomax schedule that seems to completely control the seizures, we may stop at that dosage. We will continue on the new Kepla drug and will taper away the Ativan over the next couple of days. If the increased Topamax does not seem to be working, the next two options that we will choose from are a type of steriod or the kenetic diet. Both have side affects but none seem all that bad. Steriod - irratible baby, eats alot, gets big, ... Diet - it is a high fat diet so all the issues with that. Hopkins is leading researcher on this diet and it seems like that would be the route we would take. Hartman said the diet is extremely easy at this age. It is just prescription formula (maybe baby food). It is easier doing now since she will eat anything and older children will not. Steriod would last 1 month. Diet lasts about 3 months, but could possible last longer - some patients stay on for couple of years. He has had some patients after taking the diet be taken off the medications completely. Talks of the epilepsy being a side affect has seemed to be put on the side burner. He does not seem as concerned as much now about her development and potential of other disabilities. I would not take it off the stove completely, but we can now focus on her development and controlling the epilepsy and not on what disabilities beyond seizures that she may or may not have.I think he wants to do another blood workup to get a baseline and check her blood chemistry. Not sure if they are doing it here today or if it will be something we do later. Next Dr. Hartman appointment will be in November barring any other issues.I assume we will be released on good behavior sometime today.-Curt