Catching Up - Medical Updates

MARCH - Gerald and I were able to finally come home with Keeton. The first weekend that we were home we noticed what we thought at the time was a seizure. We contacted his neurologist, took him in for an EEG and he was diagnosed with Infantile Spasms. We had no real idea what IS was.  The only thing we really knew was that if not treated it could have devastating long term effects on Keeton developmentally.   They told us that we were going to treat this very aggressively. We started him immediately on a medication called Topamax.   

APRIL - With the development of the IS, we were on high alert with Keeton.  We had to monitor, time, count and record each spasm he had.  We kept in close contact with the Neurologist during this time as they worked out the medication.   We finally reached the max dosage that we could give Keeton with the Topamax without much success and we needed to start Keeton on a new drug called Sabril.  Once again, Gerald and I had high hopes for this new drug to work and he would have no more spasms.  

MAY - We still were not seeing any progress in the spasms for Keeton.   In fact, it felt that as we increased the dosage of his medication to treat them the spasms were becoming more frequent and the clusters were lasting longer. It was getting discouraging.  We began discussions again with the Neurologist about starting ACTH Therapy. ACTH is a daily injection of the adrenocorticotropic hormone. With IS they believe that the brain has immature cells that aren't allowing signals to be accepted. The drug is suppose to mature the brain past the point of spasms.   The end of May we started the therapy. We had to admit Keeton into the hospital for a week.  While we were in the hospital they did a bunch of baseline testing on Keeton to make sure he was healthy to start the therapy. Then they taught us how give Keeton the injections.  They monitored Keeton for a couple of days to make sure he didn't have a bad reaction to the medication and sent us home.   May 29th at 6:00 PM was the last time Keeton has had a spasm. 

JUNE - This was the first month since we came home that we were truly able to enjoy being home with Keeton without having to worry about the spasms.  We took Keeton in for another EEG.  Although we were not physically seeing the spasms, he was still showing signs of hypsarrhythmia.  It had improved since the last EEG but we still needed to keep giving Keeton the daily injections of the ACTH Medicine. By "we" I mean Gerald. I had a hard time giving Keeton a shot, so we decided that this would be Gerald's responsibility.   

JULY - We increased Keeton's ACTH Medicine and took him in for another EEG.   This EEG the hypsarrhythmia was gone.   There was still abnormal activity which means that he will be high risk for Seizures, but the IS appear to be gone.   We, also, took Keeton in for a MRI.  

AUGUST - We met with Keeton's Neuro Surgeon to go over the MRI results.  All the fluid had properly drained and there was no need for any surgery.  The MRI didn't show any further shrinkage of his brain.   We are told that he will have some long term effects from his injuries, but we won't really know what those are at this time.  We began weening Keeton off of the ACTH medicine. 

SEPTEMBER - Keeton will be off the ACTH by the end of the month. We are so excited about how well this drug has worked for Keeton.  We still have not seen any spasms during the weening period and Keeton is still doing well in his progress.   We are hoping that we can start weening him off the other medicine after we are cleared of the ACTH.