Anyone been diagnosed with CIDP? It's very rare

My grandson was diagnosed with CIPD on his 16th birthday. We spent 2 months in the hospital and have now been home for 9 weeks. It's hard to watch a 16 year old athlete now in a wheelchair. He is getting infusions every 3 weeks, steroids daily, therapy weekly. He has gained his weight back and he is getting strength back. He can walk with a walker a little. I don't know if this is normal but if it is this is going to be a very long process to see improvement.

I understand what you are going through. My daughter's insurance she had on her son who was diagnosed with CIPD in 11-22 would not cover the infusions. We were in panic mode. The hospital helped her fill out paperwork to try and get him on medicaid. She is a single Mom so it was approved. Thank the good Lord. We are now jumping through hoops with medicaid and doctors/hospitals trying to work everything out and it is a lot. I hope it works out for you.

Unfortunately there is no normal with this awful disease. On the upside he is young, a full recovery is possible but will take time, perhaps years. It affects people differently which is why there is not a clear pathway to full recovery. I am sharing a link to a video presentation that is very informative on where the Dr's have found ways to improve care to make full recovery possible for everyone. I am hopeful this provides you with the knowledge needed to understand what the Dr's are saying when you visit them for progress updates. I would also encourage you to ask the Dr's to prescribe water therapy for your son, I go 2 to 3 days a week and it remove sgravity, which in turn helps me to move more freely. I am also including a link to a Facebook group that is safe and helpful to chat with others who are in the same battle as you.
https://www.youtube.com/watch?v=jJiAxbBCACw&list=PLvlvq-lyVY6Y5gFCZTjnZ_iI6NGKfUqfi&index=1&t=17s
https://www.facebook.com/groups/gbscidpwarriors
What ever you do, never give up hope, some days it's all we have and it will never disappoint. Romans 5:5

Welcome @sherylynn, You will notice that we moved your post to an existing discussion on the same topic here:
--- Anyone been diagnosed with CIDP? It's very rare: https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/.

I see that you have already found the discussion and have met @tedjones77494 who shared some great information with you. I know this has to be hard for you also. Are you able to share some of the suggestions and information provided by @tedjones77494 with your grandson or his parents?

So glad he is on the mend. I was diagnosed in 2014 and still get Ivig every 2 weeks. I am now living a normal life with very few restrictions. Please register with the GBS/CIDP Foundation to find a liaison and someone nesr his age he can talk to. http://Www.gbs-CIDP.org

Thank you, I will never give up on him.

I have a variant of CIDP and was getting IVIG infusions. They seemed to slow the progression of the disease, until Medicare changed standards and I no longer qualify for the treatments. Since stopping, my spasming and leg and foot pain have come roaring back. I can see the symposium was a few years ago...what have you learned since? New treatments...symptom management?

Hello @minfromtexas, I'm not sure that @bburleson1 is still following Connect as they were last active on Connect in May of 2020. Hopefully other members may have some information on any new treatments or symptom management of CIDP. I did find an article on the topic that was last updated in May 2023 and might be helpful. It contains treatments, diet, outlook and more.

"A person with CIDP may benefit from a predominantly plant-based diet filled with colorful fruits and vegetables. Other beneficial foods include lean meats and fatty, low mercury fish, such as salmon."
--- What to know about CIDP: https://www.medicalnewstoday.com/articles/320724

Also noticed this 2023 article on your question that sounds interesting.
--- Repurposing MS immunotherapies for CIDP and other autoimmune neuropathies: unfulfilled promise or efficient strategy?: https://journals.sagepub.com/doi/full/10.1177/17562864221137129

I went through many rounds of IVIG infusions, and there were no improvements in my symptoms, so my neurologist discontinued them.

I’ve been getting progressively worse over the past 11 yrs.
I was diagnosed with CIDP few years ago, and nothing has helped me.
Actually now my right hand is numb and tingly, and I have trouble holding things and using it normally.
I pray that my left hand stays as it is.
My quality of life stinks right now, there’s so much I can’t do in general.
I can’t feel my feet, and my balance is awful.
I use a cane and a walker to get around.