Dr. Thompson has become such a source of peace for me. He is never discouraged and always gives me encouragement. One thing in particular that he said was great. I asked him what I'm looking at for the seizures ending, jr. high or high school. His reply was, "Good heavens no. You're looking at months to a couple of years". He also added that we'll have to see what pieces we are left to pick up after the seizures are done, but at least I can look forward to that part being in under control in a reasonable amount of time. Anyway, he is awesome, and makes himself so available by giving me his cell phone number. I don't think anyone can appreciate that until you need to talk to a doctor on a regular basis and you're left leaving messages with an office assistant every time. We'll have another EEG after the holidays... just to be sure, and then we'll do the IVIG after that. We need lots of prayers that something will work for Dray. Thanks to all who offer constant support and prayers for Dray... it is very appreciated!
Monday, December 7, 2009
Here's the plan...
I talked to Dr. Thompson last week and we decided on a plan for Dray going forth. My biggest concern expressed to him was that at least on the steroids he has been able to maintain some stability. He hasn't lost his ability to talk completely, which has happened before. He struggles so much to understand us, but for whatever reason he has maintained a manageable level of expressive language. Like for example we'll ask him in a book where Santa Claus is and he'll change the subject or give us the blank stare. But then 2 seconds later he'll say, "That's Santa Claus," so he can say the words, but not understand others when they say it. So strange what's going on in that brain. Anyway, I didn't want to lose that speech again. So, the next step was IVIG (intravenous immunoglobulins). It's a blood infusion that they will do once every 3-4 weeks. I was just freaking about trying it and having any worse results than we are currently having. Dr. Thompson said that we could keep him on the steroids and do IVIG simultaneously. Thank goodness and what a relief!!
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Hi,
ReplyDeletesince we have been doing IVIG monthly now, maybe I can give you some info.
IVIG is not a blood transfusion, it is a blood product, but prosessed. It contains antybodies from a pool of great number of doners. It is a clear and ,as we found out once when it leaked a little, thick and sticky liquid. It is administred as any infusion would be, except it has to go very slowly to prevent side effects. With Lucas it's 100ml and it takes 5-6 hours. The blood pressure is monitored througout the whole process to make sure it doesn't go down. If it does, they slow down the IV. One time Lucas fell asleep and his pressure went down to 70/30. The doctors blood pressure went right up at that point, I am sure.
Lucas allways has a reaction on the 3rd day after the IVIG. He gets letargic and is sick to his stomach all morning. It allways stops around lunch time when he asks for a cookie and he is fine until next time. Ocasionally he gets a fever instead.
About the effect of the IVIG. In Lucas's case we did't see any major improvements until after his 6th dose. Actually, he even got worse at some points, but we were lucky that the doctor was willing to continue the IVIG, since it is very expensive and they do not like to give it to patients if it doesn't have a possitive effect.
Anyway, Lucas started speaking and understanding like never before after the 6th one, unfortunatly the cost for the hospital was too great to continue after the 7th, they said we will try to see if the effect is going to stay, or if it will wear out. After two months it did wear out and he went downhill. So now we are back on IVIG. No major chnges yet, but I am gonna fight to keep him on it regularly.
Make sure you take lots of videos and toys to the hospital, after the first excitment with putting the IV in it is a boring process.
All the best.
Brona