Reply To: 7 year old female with CIDP

July 13, 2008 at 1:15 pm

Thanks Dawn!! When you say a loading dose, do you mean a one day treatment or 5 days of treatment? Oh and yes it must come in 1 gm because for sure Hailey received 12 gms each dose. I looked it up on her medical records to confirm that. As for her symptoms, they have been weakness starting in the feet and working up to paralyzed hands, not being able to walk & etc. but not ever going into her respiratory muscles (thank god). Also she had a nerve conduction during the last relapse and both the myelin and axon have been effected. About the doctor issue, here at the Denver Children’s Hospital, they have been receptive to all of my suggestions. Last time we were here, a specialist from Germany, Dr.Toyka was here and evaluated her and said getting aggressive with treatment now would be our best chance at getting long term remission but it’s just so confusing to me about treatment and what is best. Thats why its so nice that you guys are here to help by sharing your experience. oh yah and she does have a port already. It was suggested last time by the picc nurse to get that put in if she had another relapse so I pushed for that this time and got it. thanks again for all your help, Holly