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Crohn's Disease Forum

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  1. R

    Undiagnosed kid--what to do?

    Thank you! He is actually feeling better now. He started a free (!!!) pain program here for kids with functional gi disorders where they do counseling and hypnosis and it is helping, also I think all the supplements and probiotics are starting to build up. We just got tests back from our...
  2. R

    Undiagnosed kid--what to do?

    Now they are saying he has "functional gastrointestinal disorder" and referring him to pain management. Neurologist suggested different mix of psychiatric meds. I guess that's good and all but I don't understand why, if it's functional, he started having it all the time constantly 10 months...
  3. R

    Undiagnosed kid--what to do?

    Still no specific answers but we did get fecal calprotectin done--waiting for results. Got referred to a motility expert (yay!) and just saw pediatric neurologist. Hoping we'll get some answers soon. Meanwhile, tramadol is giving some pain relief.
  4. R

    IBD kids affecting non IBD kids lives

    I grew up with an older brother with (then fatal, I think there are starting to be experimental treatments) Duchenne's MD. Fortunately I worshipped him so I rarely was jealous. However, I did not get the parent time. Three suggestions I would make: 1. Find books or videos that describe your...
  5. R

    Any answers to a hurting belly?

    OOPS! the more pain he is in, i meant to say in. although, the more pain he is, is also probably accurate. snicker.
  6. R

    Any answers to a hurting belly?

    I would love to know if there is anything that helps with the pain! We've tried all the heat ideas, relaxation, he's now doing Biofeedback (out of pocket). Levsin, Bentyl, now we are on donnatal. All of it offers slight lessening of the pain. Nothing knocks it out. He is seeing a psychiatrist to...
  7. R

    Undiagnosed kid--what to do?

    Thanks for the info on EGIDS! This is something I'll have to look into more. He does continue to have reflux and low motility and the reflux was not helped by any of the reflux meds. RIght now we are sulking over latest no-information-received test, the contrast MRI, and after 9 months of this...
  8. R

    Undiagnosed kid--what to do?

    Thanks for the website--does have useful info! We are working with a pediatric GI--our third so far. He had eisinophils (sp?) in his first endoscopy but he doesn't measure as allergic to anything so we're not sure what that was. He's been tested for celiac, isn't, but is gluten-intolerant as...
  9. R

    Undiagnosed kid--what to do?

    I think the reason no one is interested in thinking Crohn's is that he hasn't lost weight or growth (thank G-d!). Just the opposite, he keeps gaining weight even though he eats almost nothing. I'm thinking there's some sort of malabsorption issue going on, like maybe he's turning all his...
  10. R

    New diagnosis - so lost!

    We've been off gluten for years. Every one in the family just has to be on the same diet. I'm not a short order cook. The best gluten free bread is the one you make yourself. There are a lot of good blogs on line. It isn't as hard as you might think because you don't have to knead GF bread. I...
  11. R

    Levsin or Elavil?

    My son has tried both. He first tried Bentyl but Levsin worked better-my GI says that if one doesn't work, try the other. Neither one was very effective, though, so now he is on Donnatal, which is a cocktail drug and works a little better. Elavil was amazing at first-the only thing that ever...
  12. R

    Undiagnosed kid--what to do?

    I've been reading posts here for a while but have just joined to seek help. My 11 year old son has had "functional abdominal pain" for 9 months now. He's had endoscopies which show acid damage from reflux, but he isn't bothered by reflux. He's had a colonoscopy. Other than the reflux, the scopes...
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