Your Replies

  • January 19, 2014 at 8:53 pm

    Thank you guys

    August 8, 2010 at 5:15 pm

    Our daughter was diagnosed 10 years ago when she was 5. Dawn is on target with not letting your son relapse. It took us along time to realize this and convince our neuro to admit our daughter more often. She has received over 200 treatments in the 10 years. She just had her 3rd port placement 2 days ago. It has saved her veins. She is now receiving 1gram/kilo of IVIG every 3 weeks. Right now this is working for her.

    August 6, 2010 at 11:31 pm

    Ken, Thank you for being so open with your struggles. My prayers are with you. Our daughter has had CIDP for almost 10 years and i’m afraid she might be in the 5% category.

    August 6, 2010 at 11:12 pm

    Our daughter’s CIDP is worse in the Texas heat also. She is also unable to feel temperatures. We do the best that we can to watch her and make sure she dresses for the outdoor temperatures.

    June 25, 2010 at 2:00 am

    From a caretakers perspective

    I have a great relationship with my teenage daughter from spending so much time with her in the hospital

    We have the best friends anyone could ask for. When i’m in the hospital with our daughter I always know our son is taken care of

    When my daughter is with me we handicap it and she’s not embarrassed

    My daughter has found her inner strength

    My daughter does a great Quasi Moto when her face is acting up

    We are going to France for vacation. Thank you Make A Wish

    Our family can do anything

    February 9, 2010 at 10:51 pm

    We asked about this for Julie Ann and they said she didn’t have enough belly fat.

    January 20, 2010 at 7:53 am

    As far as we know there is no apnea and this occured when she was awake. Her feeling like she would die was in the middle of the whole eppisode. We have been at the hospital all night and should see a neuro soon. Thank you.

    January 19, 2010 at 11:04 am


    We have been doing this for 9 years and I have never thought to give my daughter saline before the IVIG. Thank you well will try it this weekend. How much oxy do you take?

    January 19, 2010 at 10:51 am

    We have been using gamagaurd the whole time. I’m thinking since she is allergic to IVIG and has been in hospital almost 100 times in the past 2 years, if her body is not handeling it well.

    January 15, 2010 at 11:46 am

    Elevated protein levels in the spinal fluid is as conclusive as the docs. can get. My understanding is to diagnose it with a nerve biopsy requires longer term damage for the “onion bulb” to form and it can leave a permanetly numb area on your ankle.

    January 15, 2010 at 11:41 am

    Dawn seroquel is usually prescibed to stop racing brain and help people with bi-polar to sleep. My oldest daughter takes it and we have used it for Julie Ann to help her sleep.

    My daughter has had this disease for 9 yrs. and one of the things that helps her hydration is to piggyback her IVIG with D-5. It also helps with her upset stomach. Saline is not considered compatable with IVIG. I hope this helps you.

    January 15, 2010 at 10:24 am

    I had to post under my husbands name till the site approved me. Julie Ann is quite allergic to IVIG so we do go into the hospital. We have been premedicating her with solumedral and iv benadryl. 5 treatments ago she started to develope a sensitivity to benadryl and we have had to go to oral benadryl. That’s when the hives started and they have been lasting longer with each treatment. First it was the night she came home from hospital and this time they lasted for 5 days. I did check to make sure the brand hasn’t changed and it is still gamma guard and has been the whole 9 years. I am asking if we can give her a very slow drip of benadryl with out having her throat swell shut or if there is an alternative to the benadryl.
    Thank you for the lead on the ointments. I will persue those today.

    Keven’s mom, thank you for your posts. You have alot of valuable information and I appreciate you sharing with us.