Newly diagnosed 13 year old child

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This topic contains 5 replies, has 5 voices, and was last updated by  Tinglytoes 6 months, 2 weeks ago.

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  • #112474

    CIDPmom
    Participant

    My daughter was finally diagnosed with CIDPp last week. She has not improved significantly with 10 weeks of steroids. She starts IVIG soon. Does anyone’s children also have esophageal symptoms too? She is better now after steroids but she felt extremely full and and like she couldn’t swallow her food for several weeks. We started Folic scid and B12 injections as these symptoms arose. Her nerve block in her leg has only recovered slightly from 85% to 70% with steroids at this point.

    #112475

    Jim-LA
    Participant

    If there are esophageal spasms, they could be the result of another condition such as GERD or Achalasia. Achalasia is a problem with the nervous system in which the muscles of the esophagus and the lower esophageal sphincter don’t work properly. CIDP can affect such muscles, but it is rare. Anxiety or panic attacks can also cause similar symptoms. Such spasms may be more pronounced following hot or cold food intake.

    Your daughter may wish to read the following publication and make contact with the author, a 13 YO girl herself in 2007 at the time of her CIDP attack:
    http://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2012/01/TeenYoungAdult.pdf

    This booklet can be helpful to parents when having to help their child navigate this disease:
    http://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2012/01/CareForChild.pdf

    Finally, here is a more technical publication based on studies that show varies outcomes of different treatments:
    http://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2013/02/Childhood-CIDP-2013.pdf

    I hope some of this information can help you, your daughter, and her physician get this disease treated quickly.

    #112476

    Weathm01
    Participant

    My daughter had gbs not cidp but she absolutely had swallowing problems so I’d imagine it’s similar, due to cranial nerve involvement, and it improves as the condition improves. Are you on Facebook there is a GBS kids group, a closed group that I found very very helpful. I think lots of other moms/dads on there may be also dealing with the chronic form

    #112477

    Jim-LA
    Participant

    Weathm01, There is a GBS-Child forum here. Perhaps you might find the support you seek there.

    I personally do not do FB because of the business model employed by Zuckerberg. But others here use FB and may find a link posted in the proper forum to be helpful.

    #113586

    CIDPTurtle
    Participant

    Hang in there, Mama! Nothing happens fast in this disease.

    My daughter’s onset started in August of 15, but she wasn’t diagnosed AIDP until May of 16 and was later switched to CIDP in July of 16. She was paralyzed up to her shoulders at diagnosis, but we thought we had skipped the respiratory and digestive paralysis. The first 6-8 months of treatment, and even on occasion still, she will get incredible stomach cramps,intestinal cramps, or have problems swallowing. My gut says that there was more paralysis going on there than we suspected, I also think the pain comes as the nerves repair themselves. It seems like her digestive complications happen more after IVIG, but overall they have lessened over the 16 months we’ve been at it.

    It’s an incredibly mysterious disease. I keep a log of all her medications, symptoms and side effects, just to see if I can find any pattern to things. I hardly ever do, but some of the data is helpful in predicting when things might get rough again.

    Our family has kept a blog for a year now and we share as man helpful tips as we can. http://pragmaticturtle.com. Hang in there and hold each other tight this holiday season.

    #114005

    Tinglytoes
    Participant

    Hang in there mama bear!
    I can not say I know what it is like to have a child with CIDP but I was the child with CIDP. As far as i can remember I never had any esophageal issues. I hope you are all coping well with her diagnoses and please don’t hesitate to contact me if you (or her) want to talk! I know I could relate on being a teenager with cidp and would love to help!

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