Infantile Spasms....Ugh!

This post is way overdue but I'm just getting to the point where I can post about it without weeping up and falling into a depression. Aaron was just diagnosed with infantile spasms about the beginning of September. It was totally by accident that I caught it and I torture myself with guilt that I didn't catch it sooner. I think it started sometime around April when we got back from Canada for our first ABR training. I was working on him and noticed he did this little "hiccup thing". My sister says he contorts his face like he just sucked on a lemon. We had been struggling with reflux and I thought something was coming up and then he swallowed it again. It didn't then and still doesn't look like what was described when I first read about it. No dropping of the head, arms & legs shooting out, etc. He would have these "hiccup things" once or twice a day, and never cried or anything after they were over. One day I decided I wanted to see one myself so I got on youtube. Babies were doing all kinds of things. An overwelming feeling of dread and guilt decended down on me like a black cloud. I posted on my ABR support group what I thought was happening. These women are so strong, give great advice, and are big advocates of doing things the natural way. But when I posted about Aaron possibly having IS, they wasted no time telling me I needed to call the neuro, get him an EEG asap, and even what medication we should try first. They told me about Vigabatrin and ACTH. Vigabatrin could only be obtained from Canada at the time. ACTH injections were also an option but had terrible side effects. I was so happy when his neuro gave us these two options. She already knew about Vigabatrin, had been using it for years, and already had a Canadian pharmacy to contact. The Vigabatrin has helped to reduce them to a couple of clusters a day instead of 4-5, but they're not totally gone and I so miss his smiles and laughing. His EEG on 10/14/09 improved but the hyps are still there. So we had to start ACTH injections on 11/10/09. Aaron had to be admitted so that they could monitor him and see how his body responded. His neuro started him on a low dose of .4ml once a day. Thankfully, he only developed rosie warm cheeks and no other side effects. His cheeks didn't turn into a rash and resolved after a day. The worst part for me is giving these darn injections. Oh how I hate it! Aaron has done so well with them. He wines a little but no full blown screams or cries so far. I just wish I was faster like the nurses. Anyway, we both have to endure this torture for 8 weeks. We have to give it 2 weeks to work and another 6 weeks to ween. Here are photos of him in the hospital.


Please pray that this works. If not, I don't know what plan C will be. These seizures have sabatoged the progress of his development. He has still responded to his therapy but I'm positive he would have responded better if these spasms had not been working against his brain development. But we will press forward and never give up on his potential. God is good anyway.