Monday, November 28, 2005
Now she is gaining some ground. After another appointment with her Neuro they upped her Keppra from 1ml twice daily to 2.25ml twice daily and added B-6 for her irritability, also to check to see if she had a B-6 deficiency(very very rare). It turned out that she didn't. The Keppra again improved her seizures for a few days only for them to return in higher numbers.
Then on November 3rd her seizures started getting worse they climbed back up to 86 head drops a day. So I called the Dr. and he prescribed her with Klonopin which is an older drug. We were a bit hesitant in the beginning because it causes sedation which is not what we wanted but we wanted the seizures cut out so we decided to give it a try.
This turned out to be a great decision as it cut her seizures out immediately. We started it on Nov. 7th at noon and Tuesday she didn't have anymore this went on for 3.5 days until they returned mildly. We started seeing brief nods here and there. During the 3.5 days she would do this weird eyebrow twitch we found odd but we didn't know what to look for besides the classic head drops. She is now having anywhere between 2-15 head drops a day which is much better. We have gained so much ground in these past few weeks with just having these mild seizures. She has started babbling, smiling, laughing and blowing raspberries again. She has found her hands all over again which is adorable it looks like she is praying(seen in upper left picture).
She also has found her tongue, she loves to stick it out all the time which is hilarious. She is so sweet and we are loving all new things she is giving us. What's next for her? See below:
Cameran goes back to the Neuro on Friday, December 2nd to see what they will be doing next. He has talked about starting ACTH and if that doesn't work they will try Vigabtrin(which isn't offered here yet but we can get it from Canada w/a prescription). Her pediatrician signed her up for Early Intervention last week at her 9 month check-up. They called this morning and are coming Tuesday, Nov 29th to get her started they will be getting my pregnancy history with her and all her medical info that we have, so they can get her evaluation started. We are hoping to get her back on track as she is delayed in her speech. She doesn't play peek-a-boo or clap hands etc. some things they will try working on with her. Her vocalization is picking up lots and she started saying "mama" which just made my day, but she was saying dida last week. So she is coming around which is wonderful news. Oh yeah this months weight was down from last month she weighed 18 pounds 15 ounces and was 30 inches long. She isn't eating much here latley but she has a bad runny nose so that might be the cause.