Parents of children with CIDP?

I am looking for other parents of children diagnosed with CIDP. My 12 year old son was diagnosed last month after a 8-12 week period of muscle weakness and ataxia that my husband and I assumed was just growth-related. He had grown 3 inches over the past year and his feet have grown 2 sizes, so we just assumed it was growth-related clumsiness.

He received two doses of IVIG about 4 weeks ago. After 2 weeks with no improvement, his neurologist admitted him for 4 days of pulse high-dose methylprednisolone. After 48 hours we started to see improvement. He is now on a 5 week taper of oral steroids and his balance as well as muscle strength is improving.

He has atypical CIDP in that he has central symptoms as well as peripheral--his spinal cord MRI showed inflammation in the C and T spine. This kind of threw the doctors for a loop, but they are still certain of the CIDP diagnosis. My son also has hearing loss that has come on in the same time period so we are assuming it is autoimmune as well. He is seeing an ENT next week, but we have been told that steroids are the treatment for autoimmune hearing loss and since he is on steroids already we will just wait and see if his hearing improves.

I am a pediatric nurse and have done a lot of research on CIDP and read many recent journal articles. I am looking forward to learning from you all!

Thank you!

Mitchell'sMom

Hi
My names charlotte and I’m 16 years old, I was diagnosed at 2 when I suddenly was unable to walk more then 2 steps at a time. Originally my parents believe my constant falling over was attention seeking as my mum had just had twins and I was no longer an only child. After about a month my parents began to worry and took me to a doctor.
Originally they doctors believed both my hips were dislocated and that was the cause of my falling over and clumsyness. After both hips were X-rayed and confirmed normal I was sent to a neurologist. It’s then I was diagnosed with cidp.
Since then I have been on 8 weekly transfusions of IVIG. My current dose is 36 grams and my rate is 140 mL and hour. I go to the local children’s hospital and my transfusion takes about 6 hours.

While taking my IVIG I live a completely normal life. The only school I miss now are the every 8th Friday when I have my infusion. I can run and am almost as strong as most of the others at school. Most people do not realise I have disease until I tell them and I have made a huge improvement since originally diagnosed. Two years ago I finally developed reflexes after not having them. They only time I feel as though I still have the disease is a week before my infusion is due when I start to feel weak, but I am still able to walk and run just need to take a break now and again.

I hope my story helps and I wish your son the best for a speedy recovery.

Hi Mitchell's Mom,

My name is Joyce, Deadeye is my hubbie of 19 years, he was first diagonest with M S, then Gillian Barrea, and has for the last couple of years had C I D P, the one thing we noticed is you never said anything about is Aplasma Aperese it is a treatment that has helped my hubbie and it was ordered by his nuroligest for 1st a week with the stipulation hubbie could cut it back as he felt better but it was to be at least a monthly treatment for him once in a while he went every 2 weeks then every 3 then monthly, when colds were going around with our children he woulds bump it up to every 2 weeks to keep his maintiances going good ... defently saw improvements with Pherese treatments... they considered it his maintance program ...he was just hospitilized april 13th to may 31st and they switched him to I V I G not seeing any improvement yet with the I V I G ... but the doctors have not yet ordered it for him since he came home ... our youngest son has had health issues as well and complains about his legs hearting him on and off he will be having endoscopy and coolonoscopy onthe 27th to fine out if there are ulsers in his asofigest or crones , I hope you fine some thing to help your son I know all to well how helpless this makes us feel as a Mom ... and I have had to keep my children up on there fathers illness as well... Stay Strong .... Joyce

I am a mom of a daughter with CIDP, Dx at age 3 and is now 6....If you are on facebook at all I just started a group called Parents of children with CIDP.....Its a small group but I know they're are many more of us out there. My name is Amy