Were still battling some bug thats been around here all week long. Both Madison and Dawson have had on and off again fevers throughout the day and yesterday evening Madison started vomiting and became very ill for the rest of the night. This morning found her feeling better and back on her feet again but the on and off again fever remains. As for Dawson, fever seems to be his biggest issue and it seems a little worse at night. Im ready to give this bug its eviction papers!!
Earlier this week Dawson had a EEG. The hookup went about as it should anytime you try to glue a bunch of stuff to a two years olds head. As for the EEG itself, Dr Bebin said his awake EEG is not so bad ( but not normal) but when he falls asleep, his little brain is a firestorm of electrical activity. She feels this is part of whats causing some of these learning delays because his brain is not resting as it should during sleeping hours... We are back to using Melatonin to help his brain relax and Im certainly not opposed to taking a snip of Melatonin at night with him... 15 mins and Im out like a light!!!
They also did a blood draw to check his levels of his current meds to make sure they are at effective doses. We are supposed to hear back from them sometime today ( hopefully)
In the mean time, she talked about a new drug that is coming out in the next 6 to 10 months. ( Clobazan) She was excited about this and said there has been a lot of success with this drug concerning his specific seizure type which she is calling Atonic/ Drop Seizures. If his levels of Zonegran aren't where she wants them, we might be adding Banzel until this new drug becomes available. So all in all, a pretty productive visit and its nice to know there is something out there that may help Dawson. I hate the med/drug game but at the same time its very important to keep hope alive!!! As long as there is a med that we haven't tried yet..... there is hope that that med will be the ONE.
God surely continues to bless us. We continue to find miracles in Dawson and our faith continues to be exercised on a daily basis. Your prayers in the areas of healing are much appreciated.
Our love to all
Jeff and Allison
About Me
- Dawson
- Dawson was born Sept 4 2007 and was diagnosed as having Infantile Spasms when he was 2 months old. Infantile spasms are a rare seizure disorder. Our story is one of faith and hope. Dawson now has multiple seizure types as well as developmental delays. We are prayerful that we will be able to find a way to stop the seizure monster that lurks in his brain. Your prayers and support mean the world to us.
2 comments:
I'm going to guess that you meant Clobazam? Reagan's been on it for a while. We've been having to get it from Canada but they've been trying to get it approved for use in the US. It's in the same family as Klonopin. Dr. Chugani loves to prescribe it (he's the one that put Reagan on it).
Don't ya just HATE seizures!?!?!?
I am impressed as ever, how well Dawson does in spite of his seizure activity. I hope you do see a change for the better with some of these new drugs to try.
I will forewarn you..
with HUdson, the banzel made his seizures and level of awareness really bad...it CAN do that, and actually do the reverse of what you are trying to do. Like you said...it is trial and error with all the meds...if you don't try you won't know!
Not a fun game to play though!
Sorry I haven't been real present on your blog...dealing with seizures too, and it gets the best of me.
In thought and prayer...Deb & Hudson
Post a Comment