Would like to introduce myself.
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January 10, 2010 at 8:57 am
Hello everyone, my name is Rebecca. I have an 8 year old son who was diagnosed CIDP in July of 2009. In just about 3 months he went from a normal boy to almost paralized. His doctor started him on Ivig and told us he would improve within 3 treatment if it was this CIDP. He did improve, he got up out of bed the 4th morning and went to the bathroom by himself!!! He is doing pretty well now. His doctor set him up with an Ivig regimine that would start out heavy and gradually spread out over the course of one year. He should be going once every 4 wks now but with the cold and flu season he has been set back to every 2 weeks. We are hoping to start spreading them out again in a few months. We will keep taking everyday as it comes. Brayden is a remarkable child who has smiled through every surgery, poke and prod! He keeps up hope of becoming a football player someday. Anything is possible, right? Its great to find a site i can share with him to let him know he is not alone!
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January 10, 2010 at 10:43 am
Hi Rebecca,
Glad to hear your son is getting stronger… It takes a lot of patience and prayer but you guys will get thru it… You (Iwegians) are tough in Iowa! Take care, and hope 2010 is good for you…..:) Dean
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January 10, 2010 at 3:09 pm
Hi Brayden’s Mom!
I am happy for you and your remarkable son! Maybe there will soon be a cure for CIDP, hopefully by the time he becomes a football player. He may even go into remission and not even need the cure.
My prayers are with you and your wonderful doctor. -
January 10, 2010 at 4:26 pm
Thank you for the thoughts and encouragements!! It is great to see a reply so fast! I have been searching through these forums for some time and am just getting comfortable messaging! I hope to learn more everyday and get good a finding my way around this site!
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January 11, 2010 at 11:25 am
Hi Rebecca,
My son was 10 when first dx. He started out as you describe your experience. he is now 13 and we are continuing to wean down after a 3 year process. We were at 140 g now at 60 grams If you would ever like to talk you can pm me your # or I could give you mine.
Dawn Kevies mom -
January 12, 2010 at 12:21 pm
Hello Rebecca, I am so sorry to hear that you son is having to deal with this awful afflicition. I so hope his youth will speed his full recovery.
I just wanted to say we are almost neighbors. I live just south of Yankton SD, there is also a friend on here called Iowa gal and another who lives in Omaha Ne. I am just wondering if you would disclose where you take you son and the doctor. We lost our neurologist here at the local clinic and I have been to so many others with no satisfaction about proper treatment.
Let me add, I was dx at age 65, had many very bad falls and some broken bones, so I have been in a power chair for several years. The pain is just too great to walk, nor can I wear shoes for any length of time. I just keep hoping a neurologist will show up in this area who may help me or at least find some relief for my pain.
Hey isnt this “warm” weather nice…..from 31 below Fri to 36 above Sunday…and more 30’s to come. Sunshine helps the spirits. Keep warm!
Regina -
January 12, 2010 at 6:25 pm
Great to meet you, and thank you for your responce! I wish i could figure out how certain illnesses choose their victims, i guess there really is no way to know. Brayden was diagnosed at the Mayo Clinic in Rochester by a team of neurologists headed by Dr. Nancy Kuntz. I am very sad to say she left Rochester but her team is wonderful. She was givin the opportunity to head up a childrens hospital in Chicago! We just met our new doctor in Sioux Falls, SD. Dr. Bonnie Bunch.I cant tell you much yet but i know she has shared other patients with Dr. Kuntz. Brayden is going to start ivigs every 2 wks for a while to get him through the sick season. If he doesnt seem to stay strong for 2 wks, i guess Dr. Bunch wants to start him on prednisone or an immunosuppressant, not sure what that is yet. Hope you find the help you are looking for very soon! P.S it is great to have a little warmer weather, and to see the sun!!
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