Infantile Spasm board

I posted this on the Infantile Spasm (IS) board but wanted to add it here to have for journaling purposes too.

I HATE that I am here. I HATE that there has to be a forum for IS. I HATE that I know what IS is. I HATE that this is our second baby with IS. I HATE that I am having to reach out to ya'll. I HATE seeing my baby go through this. I HATE that my baby has stopped smiling, laughing, rolling over, nursing, babbling and cooing. OK thanks for letting me get that off my chest. Most people don't understand and I don't expect them to.

Now for the LOVE. I LOVE the fact that over the past couple of weeks I have been here reading and see the love and support that ya'll show each other. I LOVE the fact that I have a blog and Mike took the time to post this forum so that I knew it was here and felt welcome enough to come introduce us. I LOVE the fact that I have a precious baby to hold and love. I LOVE the fact that I can come to ya'll and be honest about how I am feeling right now. I LOVE the fact that before I have even had any responsing I feel supported. THANK YOU!!!

About two months ago, when our baby was 6 months old he started acting like he had colic. It was from midnight until 5:00 AM. The screaming and jerking. Just like colic. Well I mentioned it to the peditrician and she said it's kinda late in life for him to start having colic. She started him on Levsin drops just to see. It got worse. So I started thinking of other things it could be. Instead of just leaving the lamp on when I would get up to nurse him I started turning on the lamp. There was a pattern to his cries and to the jerks. Surely not I thought. I watched each night not telling a soul what I thought. If I kept it to myself it would stop, it would go away. RIGHT? Well no of course.

Two of our daughters had appts with their neurologist the next so I called the neurologist and told them what I thought. Could we please schedule an EEG. They fit him in the day of the girls appts right before that. I thought things went great during the EEG. When we got to the neurologist he said we will talk about the girls first and then Abe. I said that doesn't sound good. He didn't comment. When it came to Abe he said you were right. I told him I was really hoping he would say I was wrong. He said as soon as they hooked him up to the EEG it started. His EEG report doesn't look good at all. The plan was to increase Phenobarbital which he was already on because he has panhypopituatarism and has trouble with his glucose. Each time it drops he has a seizure. So we increased Phenobarb and added Topomax. I asked about Vigabatrin because it was dd#2 miracle drug. She was in the study program in 1998 when she was 6 months old. He said let's see how this does.

The IS continued to get worse and longer. Everytime he wakes up he starts having them. We have been giving Klonopin to break the cycle but that's not really helping much. Yesterday we got Ativan and it took way too long to stop it. Today we got Diastat and I gave it to him for the first time a little while ago. It stopped it quick thankfully but really slowed his breathing. I have him on a pulse ox monitor just to keep check.

I am bummed right now and probably shouldn't have chosen this time to post but it's nice to know someone understands. I am not sure what our next step is. We did start the vigabatrin. Right now he is taking 15mg sprinkles Topomax - morning and night, Phenobarbital 16.5 mg - morning and night & 250 mg Vigabatrin - morning and night.

Thanks so much for letting me share. Mike thanks again for leading me the forum!