Anyone got any good ideas of how to explain to a two year old that you have to hurt his brother in order to make him better? What a good big brother he is!

I was just handed a parental rights in special education booklet. Oh my how it feels to be on the other side :(

Insurance was billed $97,262.69 for our newest med. That is without any refills yet too. Hope this works. Got home from hospital Saturday afternoon. Been seizure free since. Jayen is in good spirits. He is going to be confined to the house for a while. Not taking any chances with the immune system.

I just gave my baby his first injection. He cried for 2 seconds, I cried for 2 minutes. This is going to be hell. Found out the meds cost $38,000 a vial. HOLY $#!+

Finally a name

Throughout all of the increase in medicines and the changing of the seizures we were still doing test after test. We have gotten to know the EEG technicians very well! We had the EEG at 9:45am, the doctor called at 1:30pm with some devastating news. The EEG showed hypsarrythmias. He was able to classify his seizures under a condition called Infantile Spasms. As stated numerous times in almost ever description of the disease, this is a "catastrophic form of epilepsy." Most of the outlooks I could research were not good outcomes. I was so devastated. I tried to call Matt at work. Again I would have to get him out of this last thing he had to do before securing this great job. I felt like I was doing it on purpose. I had no way of controlling it but I just felt like it was my fault.
We were told to get ourselves to the hospital as soon as possible. I packed our bags. We were going to be staying for at least three days. Dalan went with us to the hospital until Grandma Kuchta could get there. He got to go play at papa's house again and wasn't too upset about leaving. He gave his brother lots of kisses and told him to get better.
On April 22nd, we started our first hope in getting rid of this horrible disease. ACTH was our best hope. No one knew how it worked or what it exactly did. All they knew was that it worked in quite a few cases and it was VERY expensive. I can't stress very enough. ($38,000 a vial. We were sent 4 vials to begin with. Our first bill was over $97,000 thanks God for great insurance) Jayen had to get IM shots in his thigh daily. What a horrible experience having to give your five month old baby a shot in his little leg daily.
With the shots comes a lot of doctors visits. We are visiting our pediatrician on base twice a week for blood pressure checks, we see the neurologist at Children's Hospital once a week, EEG once a week, blood work once a week, and soon we will start working with the Early Development Network to try to regain some of the skills he has lost. This is one crazy journey!

What is this?

The day after getting out of the hospital we started noticing these "funny movements". After getting them on video and showing the doctors, the finally agreed that they were seizures. Jayen started having four to five episodes a day. We were constantly increasing his phenobarbital. He was so drugged up. It didn't even seem like his was the same little baby. We were worried mostly because it seemed he had regressed on some of the milestones he was meeting before. We told the nurse when we left the hospital that it seemed like he wasn't able to hold his head up as well as before. After two increases in the phenobarbital we added another medicine. Keppra was started on the first of April. The two medicines together seemed to help a little. By this point he was having two to three episodes a day. And on the 14th he was seizure free! But this wasn't a good turning point. The very next day his seizures starting occurring in clusters. He would start a seizure, come out of it, then immediately go into another one. This would occur five to ten times in one episode. This also prompted another increase in the pheno and the Keppra. The 16th was also a seizure free day, mainly because he was so drugged up that he couldn't even wake himself up. The medicines make him very sleepy.