Discussions By Condition: I cannot get a diagnosis.

Please help with 16 year old son.

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Nevering
  • July 27, 2008
  • 08:47 PM

My son has a multitude of symtoms and no one has been able to come up with a diagnosis yet.

A couple of years ago he was diagnosed with esophagus and ulcers and was related to a gluten allergy. We have taken gluten completely out of his diet and the doc put him on Singulair, plus allergy shots for cats, dogs, grass, mold and the such.

He has seemed to go downhill. Recently his testicles started bothering him and was developing more pain in joints. He was diagnosed with a Varicocele which he had surgery for.

He is still experiencing testicular pain, and after a recent re-examination of his esophogas and stomach was told that he has more ulcers and one of the worse cases of anyone his age that the doctor has seen.

The worst part of this that doctors seem to chuckle and say how did you get a case where a 16 year old kid with his nuts hurting?

As for his allegies we got rid of all our cats and removed all the rugs and put in hardwood floors.

None of our actions seem to help. He seems to be getting worse.

The last lead that they had was Mastocytosis.. It's just not right that a 16 year old kid has to go through this.

Any ideas suggestions would be greatly appreciated.

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13 Replies:

  • thank you for the support an I will be investigating all of these . thanks
    Nevering 6 Replies Flag this Response
  • Where do you live? If you are near Boston, look up Joel Weinstock, MD. He may be able to help you. He is at Tufts University and is a GI specialist.
    aquila 1263 Replies Flag this Response
  • This is about Dr. Joel Weinstock:http://www.boston.com/news/science/articles/2007/12/31/his_parasite_theory_stirs_a_revolution/
    aquila 1263 Replies Flag this Response
  • I'm in northern California
    Nevering 6 Replies Flag this Response
  • You should look into these experimental treatments: http://en.wikipedia.org/wiki/Helminthic_therapy I usually don't recommend Wikipedia as a source, but the information here is pretty accurate about this subject. Autoimmune Therapies, which is mentioned in the Wikipedia article, is a company out of California, but their treatments take place in Tijuana, Mexico. By way of disclaimer, I have no commercial interests in any of these companies. Your best best would be to find a doctor in your area with ties to Dr. Weinstock in Boston. Call his office and ask for a referral.
    aquila 1263 Replies Flag this Response
  • I'm contacting Dr. H and a Reno Doc regarding this. What's amazing to me is that my family doctor seems to have given up on my son without really telling me. My son has some of the worse ulcers that have been seen by a doc at Standford, and seems that treatment of some kind (at least for the ulcers) would be of utmost importance. How can doctors get away with just patients?? How do you find doctors that care about patients rather than just the money ?
    Nevering 6 Replies
    • September 16, 2008
    • 01:19 AM
    • 0
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  • Has your son been tested for Zollinger-Ellis syndrome? This is a test for gastrin levels, to see if he has a gastrin producing tumor (usually in the pancreas, but can be elsewhere), which causes the ulcers. There are two kinds of this condition; one with just the gastrin producing tumor, and one that is associated with other endocrine tumors (MEA-II, I think it is called, for Multiple Endocrine Adenopathy, which is considered hereditary) Look up Z-E syndrome on the web, and you will find information about these. There may be an endocrine explanation to why his testicles hurt; I don't have information on this. Good luck; keep searching. Marionstar
    marionstar 228 Replies
    • September 16, 2008
    • 01:25 AM
    • 0
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  • Don't give up! This sounds like classic autoimmune disease, especially because it's in such a young person. Here is a clinical trial you might look at: http://www.clinicaltrials.gov/ct2/show/NCT00671138?term=hookworm+celiac&rank=1 It's taking place in Australia, so it might be out of the question for you to pursue it, but my advice is to save the web site address because when the trial concludes they'll publish a synopsis of their results. I *know* this sounds really "out there," but I recently presented a paper on something similar to this at an international conference. Work on this is going on at U Nottingham (UK), U Wisconsin (US), and in Australia as you can see. If you want to talk with people who are actually trying this on their own, there's a Yahoo Group at: http://health.groups.yahoo.com/group/helminthictherapy/
    aquila 1263 Replies
    • September 16, 2008
    • 00:56 PM
    • 0
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  • Just in case, here's info on Zollinger-Ellison syndrome: http://digestive.niddk.nih.gov/ddiseases/pubs/zollinger/
    aquila 1263 Replies
    • September 16, 2008
    • 03:09 PM
    • 0
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  • Well we tested my son for Lyme twice and he was negative. His problems still persist. He was recently prescribed low dose pregnesone for inflamation .. It hasn't seemed to help. Doctors seem to be at a loss or don't care. Where can I find help?
    Nevering 6 Replies
    • November 2, 2008
    • 08:58 PM
    • 0
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  • If your primary care physicians and specialists are suggesting mastocytosis, I would be concerned whether your son is demonstrating any of the symptoms of the disorder, ie abdominal cramping, nausea and vomiting, extreme urticaria or itching of the skin, episodes of hypotension that produce syncope(fainting) and bone or muscle pain that is otherwise unexplained. Realize that mastocytosis would not merely produce the characteristic esophageal lesions in the absence of other diagnostic criteria. Because of his age, I would ask whether he is taking any medications, such as doxycycline for acne or anything along those lines. While it may be necessary to rule out mastocytosis, I would merely suggest that other causes such as drug-induced esophageal ulcers has been clearly ruled out. Doxycycline, for instance, can cause ulcers of this type to the extent that it's sometimes mistaken for esophageal cancer, so it's important to look at the most probable causes before looking to something more complex. Best regards, J Cottle, MD
    JCottleMD 580 Replies
    • November 2, 2008
    • 11:25 PM
    • 0
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  • Tested at UCSF don't know which lab they used.
    Nevering 6 Replies
    • November 3, 2008
    • 04:37 AM
    • 0
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  • I'm not hearing much on mastocytosis anymore I think that may have been ruled out by a test or two. They are looking at a vacularitis type disease now like Burchetes (spelling may be wrong). They gave him some steroids (low dose) to see if there would be any improvement but there was not, perhaps he got worse. They are now thinking of putting him on sulfasalazine
    Nevering 6 Replies
    • November 3, 2008
    • 04:43 AM
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