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My grand daughter Pancreases since 11 years old

Posted , 3 users are following.

audrey75855
audrey75855

My grand daughter is 13 years old she's been dealing with Pancreatitis since she was 11 years old, she keeps throwing up and cant keep nothing down, they did so many test on her and can't figure whats wrong, her levels were up but no pain it's stressful seeing her go through this. She's so weak and loosing weight and everything I just wish I can hug it out of her. I live in Tampa Florida where we have good hospitals here for her and my grand daughter live upstate New York she goes to Albany Med and I'm trying to get my daughter to move here in Florida so that my grand can get the best care. Am I wrong to have her come to Florida?

1 like, 2 replies

2 Replies

  • vedawms
    vedawms audrey75855

    Posted

    I'm so sorry that your granddaughter is suffering so much. It's hard on adults, and I can only imagine how she is feeling.

    My suggestion is to first get her a gastroenterologist who specializes in pancreatitis where she currently lives. Have those records and any necessary scans sent to a hospital that does TPIAT (it's a self-transplant procedure) and have her evaluated by them. Even if she doesn't need the surgery, they can still make recommendations.

    There are only 10 or so hospitals that perform the transplant surgery, if she qualifies. I know of UNC Chapel Hill, UCSF (San Francisco), Cincinnati, Boston, Houston and Minneapolis. I don't know all of them offhand, but UCSF should be able to give you a list of all of the facilities. Just give them a call and explain your situation and they can help with a referral.

    https://www.ucsfhealth.org/clinics/pancreas_center/

    Once your granddaughter's records have been reviewed, hopefully some next steps will be suggested and you can make a plan as to whether she needs surgery and, if so, where. (I live in Chapel Hill, for example, so that I can attend all of my doctor appointments. It is a big commitment. )

    I know you want her close, but it may make sense for her to go where the treatments are -- for now. She's lucky to have someone who cares so much about her. Just know that you may have to play things by ear for a while.

    Good luck to all of you.

  • susan676
    susan676 audrey75855

    Posted

    Get her to a registered dietician (not a nutritionist). Is she on enzyme replacement like CREON or zenpep? If not get that going, she may need acid suppression with that. Chronic diarrhea can be very dangerous and a dietician is going to know about that more than your average doctor. Hope this helps.

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