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Anyone been diagnosed with CIDP? It's very rare

Autoimmune Diseases | Last Active: May 10 5:12pm | Replies (149)
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@sherylynn

My grandson was diagnosed with CIPD on his 16th birthday. We spent 2 months in the hospital and have been home for the last 9 weeks. He has gained weight and strength, but that's about it. He is doing infusions every 3 weeks, therapy weekly and steroids daily. He is in a wheelchair and can walk somewhat with a walker. Is this normal?

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Replies to "My grandson was diagnosed with CIPD on his 16th birthday. We spent 2 months in the..."
tedjones77494 | @tedjones77494 | Mar 31, 2023

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=17shttps://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

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John, Volunteer Mentor | @johnbishop | Mar 31, 2023

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?

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