The Rollercoaster Continues

Well we just got home from our latest hospital trip, this time for a 48 hour EEG, and I thought I would give an update about what's going on. Everything is just as confusing as it's been for the past two months! Nothing is clear-cut with this little boy! As you know, last week, we got good news that Eddy's spasms had basically gone away...or he didn't have any during the 24 hours he was hooked up to the monitors. Four weeks ago was the first time we were told Eddy had infantile spasms, but even then we were told that he was "atypical." He didn't have the spasms in clusters, which is typical for infantile spasms, and he only had them when he was sleeping. In addition, he only had a few of them, maybe five. (A lot of babies have lots of spasms a day, sometimes into the hundreds.) Also, the spasms turned into tonic seizures, which isn't the typical "passway" of seizures. (Normally a baby would have a spasm, have another spasm, have another spasm, etc. Eddy would start with a short spasm, but it was turning ino a tonic seizure, where his arms went rigid for 5-10 seconds.) So, four weeks ago, we were all set to start ACTH, a horrible steroid treatment that is recommeded first a lot of the time for infantile spasms because it has the highest success rate of making everything go away. Then Ed got sick and we decided to wait a couple of weeks and see if Eddy was still going to need ACTH.

Then Eddy seemed to be doing better, not having a seizure for two and a half weeks. And his development was improving by leaps and bounds. But then, about two weeks ago, he started having seizures again. He had three last week, and he had a bad one last Saturday. He had another one Wednesday night when he was hooked up to the monitors (which is actually a good thing, if he's going to have them, it's better that it's when he's hooked up to the EEG). The one Wednesday was the exact same as the one last Saturday - his arms came up like a spasm, then went rigid (tonic seizure), then he started shaking and his eyes rolled (tonic/clonic, or grand mal seizure). So, Dr. Weinstock was very worried yesterday morning when he spoke with us, because the spasms were back, and one of the two turned into a grand mal seizure. He said that we had to start a treatment, and we had to decide by today what that treatment would be. He recommended ACTH again but said we could also try prednisolone (a steroid similar to ACTH but not as harsh) or vigabatrin (which can cause irreversible damage to your eyes). So all day yesterday we discussed each treatment and tried to decide what to do. We were leaning towards ACTH, but were waiting to talk to Dr. Weinstock again this morning, after he reviewed Eddy's EEG from last night.

So this morning, Dr. Weinstock came in the room and said that Eddy didn't have any spasms or seizure activity last night. He stated once again that Eddy is very atypical, and he does not fit into any "standard case." He said that, a few weeks ago, Eddy had him very very worried about the spasms and seizures, and he knew we had to start a treatment. Then Eddy seemed to get better and he felt good about his progress. Last week, he seemed more optimistic about Eddy's EEG. Then yesterday he was again very worried because of the seizures and spasms, and he knew we had to start a treatment. But today he said that Eddy didn't have any seizure activity during the night, and so we can hold off for now. We are just going to increase Eddy's Keppra to the max dosage and see if that does anything to stop the seizures he's still having. It's such a rollercoaster!!

I guess the bottom line is that Eddy is a very special little boy who is not going to fit into any mold! On the one hand, we are very happy that we don't have to be in the hospital all week next week and put Eddy through the horrible treatment of ACTH. On the other hand, Eddy is still having the weird, abnormal EEG brain waves when he sleeps...and he's still having seizures...so chances are, the spasms are going to come back, and we might end up having to do one of the three above-mentioned treatments after all. Everything is just so up in the air right now, and we have to constantly be on our toes. I feel like I should just get a device that attaches from my head to the video monitor so I don't have to keep carrying it around. I probably look at it every ten seconds when I'm awake, and every fifteen minutes during the night. Occasionally, I'll sleep for an hour or two, but I'll wake up terrified that I missed something. I know that this won't be the case forever (well I'm hoping it's not!), so I just have to be strong and alert for right now. And tomorrow my fabulous parents are spending the night and taking the video monitor for me once again so I can get some sleep. (Thanks mom and dad, you are the best!!)

I wish you all could have seen Eddy when we got home this afternoon. He was so happy that he was finally able to move around that he just crawled around in big circles, playing with his toys, for a half hour. It was adorable. I was worried that not being able to practice any of his new skills for the last couple days might hurt his development, but he was crawling faster than I've ever seen him and pulling up on the couch like a champ. So there are lots of positive, encouraging things going on with Eddy, and these are the things I need to focus on.

Another positive is that my wonderful husband made my birthday very special with roses, playing our wedding song, and treating me to a great birthday dinner at the Hostaga Restaurant in Olean. It was the perfect, relaxing end to a stressful week, and it gave us a refreshed, new outlook on everything.

Thanks for the prayers and birthday wishes - you are great friends and family and I really appreciate you all!