additional neuro opinion?

Dawn,
I don’t know about “protocol,” but you have every right — and the responsibility — to question your son’s medical care. You know Kevin better than anyone, and if you don’t absolutely have to put him through another round of IVIG with all it’s bad side effects, you shouldn’t. If his symptoms start coming back, you can get treatment at that time.

If you still haven’t heard from the neuro, call his office and ask that he contact you ASAP to discuss your concerns. Stressing yourself out about the doctor’s feelings is not helping you or Kevin. Worse case scenario, if you did somehow permanently damage your relationship to the neuro (and I don’t think that your actions should have that effect), you can always find another doctor. But your son is one of a kind!

Hang in there!
Caryn

Dawn,
For what it is worth, I think you’ve made a good decision. It doesn’t match up with the doc’s original plan, but you have sound reasons. It all depends on the doctor whether he chooses to take this as an afront to his authority or not. Either way, try not to worry about it. He may not have called because he’s busy. Even if his feelings are bruised, he sounds like a good doctor and hopefully he will be professional and see this for what it is, you trying to spare your son unneccessary pain.

I hope Kevie stays happy and healthy and has a great summer.[url]http://www.gbs-cidp.org/forums/images/smilies/smile.gif[/url]

Dawn, go with your gut feeling!! the dr is just being a responsible dr and giving you the plan from his side of things. its not carved in stone and its not going to jepordize the care Kevie gets just because you have reservations about the plan. you have the right to voice your opinion and to refuse any part of treatment. it makes no sense to give ivig to Kevie if he is doing better. if he takes a turn for the worse, then cross that bridge when and if you guys get there. its always going to be there if he needs it in the future. In my opinion, just getting the ncv/emg test will show if there is any worsening of problems from prior tests. Please don’t worry about the drs feelings, he will understand your decisions. You need to go with what you feel is right for Kevies’ sake. I’m glad to hear he is doing good, after all the problems he has been having lately. You’re doing a Great Job, Mom, keep it up.:) Big Hugs to you and Kevie.

I don’t think any of the Neuros here at the Foundation will speak for you and Kevin on a personal level to your other Neuro. They are usually just guest speakers at meetings and write articles for the Foundation. But hey give it a try. You might just get lucky.

Dawn,

Your reasoning sounds logical to me, and also sounds more humane to Kevin.
I can’t imagine that your neurolgist is offended by your question, unless he has a very fragile ego. Also, it certainly sounds like you made the request in a respectful way. If he is offended, it won’t be because of you, although it could be because of his own insecurities. Isn’t awful that we have to feel so much at the mercy of our doctor’s in situations like this?

You are a good mother, trying to find your way with a complicated disease, and trying to do the best you can for your son. You have good instincts, so I think you should listen to them.

Try not to worry about what the doctor thinks at this point, and continue to do what is reasonable for you son.

Best wishes always,

Suzanne