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  1. #1

    Ehlers Danlos Disease.

    Hi All.

    My 14 year old is still having problems with her stomach & bowels not functioning properly even on the Zelnorm. Since December Cassandra's system has slowed down 2 more times & we saw Pediatric Gastro MD who is referring Cassandra to a Pediatric Genetic doctor to get tested for Ehlers Danlos Disease. The MD gastro specialist is thinking she has some of the symptoms of this disease. I am hoping this is not what she has.

    Not sure exactly how they will test for this or what to expect. We see the Gentics MD on Tuesday.

    They do know we have had scar tissue problems & she has Appendix out, Bowel blockage because of scar tissue & scar tissue removed arounf intestines.

    She has been tested for Chrons Disease & Celiac Disease. Is there anything that could have been missed, any suggestions, any other info on testing?


  2. #2

    Re: Ehlers Danlos Disease.

    I am so sorry about yoru daughter with this.

    Having some of these problems with digestions and bowels myself I know it isn't an easy thing to go through. Yet for an adult, it is a differnt thing then when you are a teenager. When you are a teen it makes it so much harder to deal with.

    How is she doing with it all? I know for a long time she was a trooper with things.

    You have my prayers greatly.

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