It's been 1 year now since Cameran was dx with Infantile Spasms. Although the seizures continue we are just glad its not as many. When they 1st started it was 158 a day and now they are about the 15 range, having climbed up a little more recently from the 5-8 range : (
We recently upped the Vigabtrin another notch so now we are at 750mg 2x daily. I'm not sure if we can go much higher. We where to wean the Klonopin when we where comfortable enough to do so but haven't yet due to the sudden increase. It's not by much but we don't want to rock the boat any.
Cameran has had a really hard past few weeks with bad bumps to her little forehead. One causing her to get 2 black eyes. We have been waiting and waiting for a helmet through therapy as they waited on approval from insurance. So I decided to make a call to them myself and they said they would not cover it. Go figure when you need the insurance they are never there on these such things. The guy had actually told me the reason they want cover it is because you can buy one in the store. I said you have that store name???? Then told him what it was for as if they didn't already know she has seizures......HELLO! You would think they would cover something that would keep her safe. Hard to believe they covered her DAFO'S.
So anyways we had to go ahead and order it ourselves hoping to be reimbersed through Early Intervention. That thing cost $200.00.....OUCH! Well before we got the helmet she took another hard bump from a seizure calling for a trip to the Peditrican. Poor baby girl this thing was huge and very squishy. After a 2 hour visit and an x-ray to her head everything seemed to look ok. They where going to a scan but she didn't pass out, vomit and seemed to be acting fine. Luckily we received the helmet that day!!! She looks so cute in it. Cameran's helmet came from "http://www.plument.com">www.plument.com
On another note we took her off the Melatonin after finding some links to it and her Gynecomastia. Our peditrician looked at it while we where there last week and it looked fine and said he definelty thinks it was from that med since it can release some hormones. This also just started recently with the starting of this med so kind of hard to not put the 2 together. And believe it or not she has been sleeping great since we took her off of it. Imagine that!
She is still not talking yet a few sounds here and there, kind of like a rambling singing/humming sound. Not really babbling like she was 3 or 4 weeks ago. On a good note she is starting to sign more for More, Please, My Turn and Play. She does these signs great in her speech class but want barely do it for me.....Little Stinker!
Cameran continues to do well with her eating and has gained a pound finally after being 22 pounds for 6 months now. She weighed 23.9 pounds last Thursday! She goes back for her 18 month check-up this week and back to the Neuro on August 25th, so I 'll let you know how it all goes!