Child cidp

My child was diagnosed with CIDP when he was 1.5 years old in 2012. He is treated with IVIG, CSA and prednisone from 2 years ago to now. Now he can run and walks normally. I'd like to know what's the further treaments, is anyone here can share the experience?

Everyone seems to be different. Some people I have talked to have been on IVIG for many years, others are taking no medicine at all. I was on IVIG for a couple of years, but gradually weaned myself off it. Now I am only taking Imuran, and am thinking of asking my neurologist if I can try stopping that. The trick seems to be, first, finding what works for you, then deciding if/when you are better enough to gradually go off it.

This illness is so frightening that it is very easy to just stick with a medicine, if you have found on that relieves your symptoms. But you owe it to yourself to try to get off the medicine, if possible.

I have not read or heard anything that indicates children should be different than adults in this way. The disadvantage is that they cannot communicate as well as adults, so you will have to be their diagnostician, and try to determine how they are doing. However, kids in general are a lot more adaptive than adults, and bounce back more quickly, so maybe your child will be in the group that recover with no ill effects.

This is hard enough to deal with as an adult. I cannot imagine how hard it would be to treat a child with CIDP. My thoughts and prayers are with you.

Bill

In trying to find answers for my daughter age 14 at diagnosis there is a much better out look for your child. The research I was able to find at the time only about 9 cases with such young children (ages 3-7) all of whom went on to live normal lives after 3-5 years of treatments and then they went into a remission state. however when puberty comes into bloom keep a close eye on him/her and if they complain of any numbness/tingling get it check out. Good Luck to you!

thanks a lot

Momtosix said:

In trying to find answers for my daughter age 14 at diagnosis there is a much better out look for your child. The research I was able to find at the time only about 9 cases with such young children (ages 3-7) all of whom went on to live normal lives after 3-5 years of treatments and then they went into a remission state. however when puberty comes into bloom keep a close eye on him/her and if they complain of any numbness/tingling get it check out. Good Luck to you!

many thanks

Uncle Bill said:

Everyone seems to be different. Some people I have talked to have been on IVIG for many years, others are taking no medicine at all. I was on IVIG for a couple of years, but gradually weaned myself off it. Now I am only taking Imuran, and am thinking of asking my neurologist if I can try stopping that. The trick seems to be, first, finding what works for you, then deciding if/when you are better enough to gradually go off it.

This illness is so frightening that it is very easy to just stick with a medicine, if you have found on that relieves your symptoms. But you owe it to yourself to try to get off the medicine, if possible.

I have not read or heard anything that indicates children should be different than adults in this way. The disadvantage is that they cannot communicate as well as adults, so you will have to be their diagnostician, and try to determine how they are doing. However, kids in general are a lot more adaptive than adults, and bounce back more quickly, so maybe your child will be in the group that recover with no ill effects.

This is hard enough to deal with as an adult. I cannot imagine how hard it would be to treat a child with CIDP. My thoughts and prayers are with you.

Bill