Dobela Posted September 21, 2010 Share Posted September 21, 2010 I am posting this here for the greatest range of possible people. I have a friend with a special needs daughter about age 8. This daughter has multiple health needs and issues. One issue is that she is unable to consume enough calories during the day (multiple malformations in the gastrointestinal tract). Because of this she has a GI button and is tube fed during the night while she sleeps. In addition to this, the daughter has a syndrome (sorry, I have forgotten the name) that causes her body to underproduce collagen. This includes the collagen under the skin and in the connective tissues and joints. Right now the area where her button is is not healing. The reason it is not healing is because there is not enough collagen in the area. Because the body is not healing, the button is in danger of being removed by the doctors in charge of her nutrition. They are concerned about infections and such I believe. My friend doesn't want the button removed because it is critical her dd receive those calories and this is the least invasive way to give them to her. My friend is wanting to find a specialist or doctor to help her find a solution to the collagen problems but she doesn't know which type to contact. Because it is collagen, would a dermatologist be the better choice? Or a rhumatologist since the lack of collagen also effects her joints? Or some completely different specialty? She does have good doctors for other issues, but they all seem to be at a loss over this and don't seem to know where to send her. She is also plugged into a good children's hospital but again, she would like to know where to ask for a referral. Thanks so much! Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted September 21, 2010 Share Posted September 21, 2010 I think I would go to a rheumatologist. Quote Link to comment Share on other sites More sharing options...
MariannNOVA Posted September 22, 2010 Share Posted September 22, 2010 I think I would go to a rheumatologist. Yes, definitely agree. Quote Link to comment Share on other sites More sharing options...
goldberry Posted September 22, 2010 Share Posted September 22, 2010 Does she have EDS (Ehlers Danlos Syndrome)? I have a very close friend with that problem. Quote Link to comment Share on other sites More sharing options...
Dobela Posted September 22, 2010 Author Share Posted September 22, 2010 I think that is the right name. Quote Link to comment Share on other sites More sharing options...
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