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Child with systemic mastocytosis, suggest the treatment

My 8 yr old was just diagnosed with systemic mastocytosis . We know it is in the intestines. He has had bad abdominal pain for a month now. Blood dr a ppt. And allergist a ppt not for several weeks. No one is taking this seriously. What I read online states otherwise. Should we bring him to st Jude?
Asked On : Thu, 3 Feb 2011
Answers:  4 Views:  548
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General & Family Physician 's  Response
Hello, welcome to Healthcaremagic. Mastocytosis is a rare disorder consisting of too many mast cells in the body. Because mast cells play a role in allergic reactions, the symptoms of mastocytosis often are similar to the symptoms of an allergic reaction. Symptoms include fatigue, abdominal discomfort, nausea, vomiting, diarrhoea, etc. The diagnosis can be made by bone marrow biopsy. There is no specific treatment for it and treatment consists of symptomatic medication. SO you should not worry about him and just take him to your doctor for treatment of his symptoms. Wish him good health.
Answered: Sat, 1 Oct 2011
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  User's Response
For this case I would like more information from your side so it will be nice if you provide it on so that I can guide you in a proper and better way.
Answered: Wed, 14 Sep 2011
General & Family Physician Dr. Ramesh M.Vachharajani's  Response
Thanks for query,
Systemic Mastocytosis is rare disease and require long investigations procedures and require skill to diagnose this disease.
Once proper diagnosis is made then there is no specific treatment.only symptomatic treatment.
So wait till you get appointment and go for diagnosis and treatment.
Meanwhile go for symptomatic treatment for diarrhea,vomiting,pain,Itching.
Ok and bye.
Answered: Wed, 14 Sep 2011
I find this answer helpful
  User's Response
You should go to the Brigham & Women's Center in Boston, if you're searching for the Masto docs. They have the top physicians and leading in research for the disease in the world. They just recently opened a Masto clinic there. My son currently sees Dr. Akin and has for a few years now. Dr. Castills is also great. Here is the link for the doctors.

This is an article about the clinic from The Mastocytosis Society website.

I hope you get some much needed answers. If you have any questions, I'd be happy to help in any way I can.
Answered: Sun, 12 Jun 2011
Disclaimer: These answers are for your information only and not intended to replace your relationship with your treating physician.
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