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Chris C.
Chris C., Nurse
Category: Health
Satisfied Customers: 1074
Experience:  Nurse with with 10+ yrs. in wellness care, geriatrics, hospice and acute care.
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My grandaughter (12 years old) has been diagnosed for "Polycythem

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My grandaughter (12 years old) has been diagnosed for "Polycythemia Vera" after approximately 1 year of poking and prodding including two bone marrow tests. Last night she was having pain in the kidney area and constantly has headaches which seem to be extremely light sensitive. She also has knots in her back muscles more typical of an adult that's close to retirement. Medical personnel have been removing blood and replacing it with a saline solution for over a year now however, it seems nothing they do causes any relief. My question is; does the medical field really understand this disease and what can I do for her at home that will relieve the symptoms "Besides shooting her"? It seems to me they aren't paying attention to some clues that are right in front of them like the lumps and the headaches that may indicate something much more serious anyway; what can I do?

medtech254 :

Polycythemia Vera does not have a cure. However, there are a few thing that can be done to reduce the symptoms including medications that lower the cell count be causing the marrow to produce less blood cells including hydroxyurea and interferon-alpha. Radiation will also help destroy excess cells. Aspirin can relieve bone pain and burning feelings in your hands or feet and also thins the blood so it reduces the risk of blood clots.

medtech254 :

There are some experimental treatments but of course these are not yet FDA approved. This will be something you will want to discuss with your doctor to see if the benefits outweigh the risks. The treatments include taking low doses of selective serotonin reuptake inhibitors which are medications that are used normally for depression.

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