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Having Ehlers Danlos Syndrome. Consulted Rheumatologist And Pediatrician With No Results. Worried About The Findings?
Hi - my husband has ehlers danlos syndrome. I believe that may daughter may now be having some issues that are related to this. She is having a lot of joint pain. Nothing seems to help. She is in constant pain and most of her joints crack all the time. She just turned 18. I took her to a rheumatologist who actually said to take her to the pediatrician because it may be growing pains. How do I locate a doctor that is familiar with this condition and be able to help her relieve some of this pain. I located a doctor in MD who specializes in EDS however the wait time for an appointment is 12 to 14 months. Any help will be appreciated.
Tue, 10 Dec 2013
hello there!
Thank you for asking, If the kid is having presentation of this connective tissue disorder then a proper follow up and work up is required to assess what type it is and to know whether it is type 4 or some thing else as type 4 is ery morbid with alot of troubles. Al he need is the skin biopsy and histopathology for collagen structures and once sorted out whether there is EDS or not if yes of what type ,
further discussion i think should be left to after diagnosis about how to manage. Ask me again after the work up and i will let you know what to do and what not to
Regards
S khan
Thank you for asking, If the kid is having presentation of this connective tissue disorder then a proper follow up and work up is required to assess what type it is and to know whether it is type 4 or some thing else as type 4 is ery morbid with alot of troubles. Al he need is the skin biopsy and histopathology for collagen structures and once sorted out whether there is EDS or not if yes of what type ,
further discussion i think should be left to after diagnosis about how to manage. Ask me again after the work up and i will let you know what to do and what not to
Regards
S khan
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You should go to a multispeciality setup where both pediatrician and rheumatologist are available, they will sit in a medical board, and solve your problem.
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