Reply To: 7 year old female with CIDP

Well,
I think you did a great job in showing your courage to the docs. You have set the bar in letting them know you are not a push over. Good Job!!
About the treatment. They are being fairly aggressive, however, I personally in my mom wisdom think it would have been prudent to start the ivig now, seeing as that the blood has been cleansed from as many autoantibodies as possibel. It would be the best scenario for a fresh start to flood the system with the good ivig antibodies. There would have been minimal time for production of the auto antibodies. I do think their plan to start in a week is ok, but not the best, plausible. I am concearned that follow up with maintanence doses may be an issue. We already know that she uses up a full loading dose 2g/kg before 3 weeks, so a 1g/kg probably won’t do the job. Some of the info I faxed you supports this plan, believing that the frequency is more important than the amount of ivig. As well, some of the other abstracts support the flooding, especially in children.

The way I see it, they have met you a little more than half way and Hailley got pp, so she may be at an advantage. I guess you will have to be vigilant in charting backward slides and do your own neuro assesments to chart the progress. If you go inwith a tangible evidence based chart should there be a decline, they will listen to you I am sure. They seem to be responsive. I also feel strongly about something else, you HAVE to have a nurse present during the infusion when you continue the treatments at home. You have been lucky. The fact that your co. did not even send the anaphalaxis (spelling) kit is alarming to me, not to mention your state of mind when seeing your child in distress would probably not allow you to set up the drip and push the benadryl. I know I could not do it!! A parent should always be removed from a life or death situation if possible, emotions do not allow one to think clearly. Kelly mentioned you have bcbs for ins. we do too. They have signed a contract exclusiveley with Coram/Apria because they are the biggest suppliers of infussions, this is who we used, they stay the whole time and insurance is paed no problem. Kevies nurse is awesome (a guy), they play guitar hero on xbox and shoot airsoft guns out side, watch movies, they are like pals, he is like a family member now! There is also Angels At Home, they specialize in pediatrics. So try to pursue that!!!! I can get you a number for Coram if you like, or you could ask the social worker at the hosp. to set you up with an agency that will come to your house. Also, make sure to stay with the same ivig product, it offers the best results if you are consistant.
Dawn