Scary Monday

Had to rush the little guy to the ER yesterday because he had continued clusters of spasms and in between seemed to be having other types of seizures. It scared the living daylights out of me and I really didn't know if it would ever end on its own. Worst thing I've seen yet. Probably not a good sign.

So we are now on clonazepam along with the Vigabatrin and Oliver is also taking miralax to help with constipation. So the meds just keep piling up. The clonazepam is supposed to be a short term thing to see if it keeps the seizures away for a couple of weeks and then we'll wean off and see if they come back. If so, they are going to max his Vigabatrin to 150mg/kg (currently on 125mg/kg) and see if that helps. The neuro that came to see us in the ER said if it's going to work, it'll work by 150mg/kg, so it's scary to be so close to that upper limit and still be seeing seizures (worst seizures yet). Sounds like they don't think the hyps will go away with meds and we will just have to wait until he's 18-24 months and he will hopefully outgrow that pattern but then he'll be on to other seizure types. The good news is there are 21 medications to treat "seizures", so hopefully once he moves on from Infantile Spasms we can roll through the medication lineup and find one that works for him. In the meantime we will keep trying to max the vgb or stack another med on top of it to keep the seizures away and just keep hoping for a miracle with the hyps on his EEG. Since he is neutropenic (his absolute neutrophil count is under 300) he will never be able to do ACTH. They believe that he might outgrow the neutropenia but probably not anytime soon. The keto diet will probably not be an option as well because of the CDG, but if things get bad enough with the seizures to the point where vgb plus an add on aren't working , I might push for that.

Once the seizures stopped he was a trooper at the hospital, got his iv in with 2 sticks and got some antibiotics just in case he has some kind of bacterial thing brewing. His ability to fight bacterial infections is severely lowered because he's neutropenic and the neutrophils are the part of your white blood cells that fight bacterial infections.

Tomorrow he starts daycare. I am SO nervous because we don't have control of the seizures, so he's going to be having them at school. I am worried they won't recognize the seizures and tell me about them, or they will call me every time he cries thinking it's a seizure and I'll be running out of work all day long. Beyond the seizures I am so nervous about him getting bacterial infections and falling ill constantly. it'll mean lots of ER trips and IV antibiotics. But it's affordable, and I think the stimulation of other children will be amazing for him. Plus, his big brother goes there every day and it would be nice for them to be at the same school. We'll give it a few weeks and see if it works out.

Jason and I both had birthdays this weekend. Unfortunately he spent his birthday in the ER with me and Oliver and we didn't have time to make a birthday dinner and open presents. We are going to try again tonight!