Kaden Update and ?s

May 20, 2009 at 9:40 am

Kaden had a horrible Monday: He complained of his legs hurting, his hip hurting, and his walk was a bit off.

PT on Tuesday: Some of the exercises he can do fine but he is showing some weakness in muscles that he had full strength in a couple of weeks ago. He didn’t complain of anything except for his hip.

After talking with his physical therapist I decided to call our local pediatrician to give him a heads up on what all is going on with Kaden. I was able to speak to the nurse and she is going to talk to the doctor and call me this morning. I am thinking that maybe they are going to try to get him to the neurologist before our regular appointment scheduled for next Tuesday.

I just don’t know and can’t understand what is going on with my child. I think it may be a good idea to take him off of the neuronin (approved by the dr) to see if we can better understand what is happening without all of the behavior issues. I also think that some of his problems (hands and feet falling asleep and fatigue) may dimish once he is off of it. It could be an important factor in truly having a picture of how he feels. Can I please get some advise on this??

I am also curious to know what the signs and symptoms are of a GBS relapse. Do they come on rapidly or slowly over time? Since Kaden has new issues here lately (his back and hips hurting along with new weakness) could this be considered as having progressive symptoms of CIDP?

I am still so confused!! I don’t know if he is having classic symptoms of CIDP or if alot of his problems are dramatized due to the behavioral side-effects from taking neurontin.

Any and all help/advise/support will be greatly valued and appreciated!!

Thanks to you all, Jennifer.