I found this news article about a boy with CIDP
AnonymousApril 25, 2007 at 11:37 pm
I found this article interesting because the mother said that her son is only 1 of 9 children in the US with CIDP. I thought there were alot more of us than that.
The article says that her son’s lungs have been affected & he has trouble breathing. I didn’t think that CIDP affected the lungs. Has CIDP changed where it was attacking & starting causing new problems?
Emily has always had the eye problem & pain in her feet. When she was really bad & first dx’d it affected her arms & hands as well but that has stopped since her 2nd dose of IVIG. Should I be expecting it to shift courses? I guess I’m confused because I’ve never heard of that happening before.
Here is the link if any of you are interested in reading it:
AnonymousApril 26, 2007 at 4:25 am
I suspect that there are more children with CIDP in the USA than just nine; that number may be based on those under a certain age which wasn’t mentioned in the article. We have two teenagers here in the UK with CIDP; I’m not aware of any younger at the moment.
Unfortunately, CIDP can hit the autonomic nerves, which are part of the peripheral nervous system, although autonomic damage isn’t common. Most of the autonomic problems seem to be in breathing (particularly with damage to the nerves of the diaphragm), swallowing, and bladder and bowel control–pretty much the same things we see in GBS, except, of course, coming on much more slowly.
Some CIDPers have mentioned that their relapses tend to change focus from time to time. One relapse may affect the arms more than the legs, another may be more sensory than motor. These seem to be people who don’t relapse frequently and who aren’t on a regular regime of treatment. (I fall into that category and have noted relapse differences, but I also have sarcoidosis, which could explain some of the differences.) There are also some who add new symptoms as they go along. Makes for a challenge!
Best wishes in the battle,
AnonymousApril 26, 2007 at 9:55 am
Cidp can affect the lungs – in my daughter’s case, repeated relapses caused an upward progression of weakness from feet, legs, arms, hands, to lungs. Back in November & December, she received respiratory therapy from insufficient vital capacity. My understanding is that her lungs were showing signs of weakness due to cidp.
Have not read the article yet, but will – thanks.
Best wishes to all
AnonymousApril 26, 2007 at 10:47 pm
I just now had time to take a look at that article. Thank you!! I got goosebumps reading it.
Last year, my daughter woke up one morning calling out to me – she couldn’t see. We were terrified she might be going blind. I took her to the opthamologist, but could not determine what had caused her loss of vision. Later that day, all of a sudden she said her vision “snapped” and she could see as well as if nothing had ever happened. We never had an explanation for it, but I always felt it was cidp related.
Reading that another person with cidp had a similar experience gives a strange validitiy to our story. Not that I am wishing it upon any one else (especially a child), but if it were to come up again, at least there is some “documentation” that the two are related. Thanks for sharing.
AnonymousApril 26, 2007 at 11:14 pm
Thanks to both of you.
I guess I always figured since we are treating the CIDP that she wouldn’t get worse. It never occured to me that something else would come up. I was thinking that this was the worse it was going to get. Apparently I needed to snap back into reality, LOL.
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