Well I have a bit more energy this afternoon, but not much. I'm not bouncing back like I would like to. Anyway, on to the details.
It looks like my last good update was on Saturday. Now Friday Matthew slept most of the day, but Saturday he was awake almost all day! He made up for the day before. My cousin Sara, her friend Ellen and I spent the evening with Matthew after we ate Cosetta's (a super good italian deli withing walking distance from the hospital). We watched Elf and marked Matthew's seizures on the EEG. See he was video'd the whole time he was there and also he also had 24 EEG hook up so they could coorelate seizure activity with what his body was doing.
Sunday the Dr. Doescher came through and said now he thought that Matthew probably was having infantile spasms. He wanted to give the Keppra one more day and he upped his Trileptil. I did not see any changes in his spasms the whole time. My cousin took off around 3 pm and we spent the rest of the day, well, lounging :)
Monday the neurologists switched call and Dr. Ritter came to see Matthew, but not until 6 pm. He said he hadn't had much time to go through Matthew's scans, but he wasn't sure what Matthew was doing. He needed the rest of the evening to go through his EEG's. All he did was stop his Keppra. He also had said not to worry about coming home anytime soon. He thought we would be there for a long time. He also wanted to have a phone conference with Steve so he could be in on the 'action' and decision making.
Tuesday around 12:30 we had the conference. He said he has a better picture of Matthew neurologically. He said there was alot of activity, but believes there are some infantile spasms, but a lot of things that ARE NOT infantile spasms or seizure activity. As he talked to Steve and I, he was like, and you can still go home today or tomorrow. WHATT??? Yesterday it felt like he told me to move in and get comfortable and today he says go home! My flight had origionally been scheduled for 5 pm, but I had canceled it. And it was now 1:30!!! So I called the airlines and they reinstated my ticket, and then had to find a ride to the airport. I called a taxi and they would pick me up at 3 pm. It was now 2 oclock. I hadn't even started packing! So I threw things in bags and got dismissal instructions, said my goodbyes, and was off! My stomach was in knots. That was very stressful! But, we made it to the airport in plenty of time to get on the plane and go home.
Now, I was a little bummed that it didn't feel like we really accomplished anything. We do know that he is having infantile spasms, and that the Keppra does not work. We did get a plan however. There are no quick fixes unfortunately. The couple of things that work quickly did not work for Matthew. They gave us a 10% chance of curing Matthew's spasms. They did however give us a 70% chance of making things better.
ACTH - a common drug used to treat infantile spasms has not been a drug that all 4 neurologists want to use, at these not 1st. Dr. Ritter stated it would be kind of like standing at the side of a raging river. People would tell you that you have a 3 % chance of making it to the other side of the river, but a 5% chance of drowning in the process. Would you try to cross the river?
Statistically, 3% of all infantile spasms that are symtomatic (that is what Matthew has) are cured with the high levels of ACTH, but 1 in 20 die. YIKES!!! I'm not willing to take that risk, as of yet anyway. Idiopathic infantile spasms have a much higher cure rate with ACTH, but that is not Matthew's type (ideopathic simply put means no reason for them.- Matthew's has a brain disorder, which puts him at risk for seizures)
So where are we now? We started Depakote and will wean off the Trileptil ( Dr. Ritter says trileptil can actually make infantile spasms worse.) Next we will wean off phenobarbitol and perhaps start Felbitol. There is a list of about 5 medications we can use. We still may need another trip to St. Paul, but we'll see. For now, we're hoping that the Depakote works.
That's all for now; I may update more later ( or I may not ) :)