Hello All, Read this posting from another board and had to post it.

February 24, 2004

Hello everyone;

I read this posting the other day and had to post it on the message

board so others will be able to reach out to help this person. I will

not mention the board that I received it from, yet I know with our

help we should be able to come up with some of the anwsers to the

questions and to direct this person in the right direction to find

the best care possible.

" Barbie Dean (---.proxy.aol.com)

Date: 02-19-04 19:11

My daughter at a very young age would scream in pain if she was

pulled by the arm to hard to were I would have to rush her to the ER.

This went on for several years. With shoulder pain then started with

hip pain. I really don't know if it was disloacted. By the time they

would pull and twist on her shoulder and hips then did a x-ray they

could not find anything. They would state it could have dislocated

and then just when back in place. She has always had joint and

stomach pain and she is flexiable. She was in the ER when a doctor

suggested I take her to gentics at Jonh Hopkins. Hopkins stated

she had EDS type III but tested her for Type4 but it was neg. I took

her for a 2nd opion at U of land who stated to me EDS does not

even have type III any longer. So confused I took her to Childrens in

DC who stated yes she did. So her gentics doctor stated take her to a

rhematogist to help because she is having a lot a back, joint pain

and swelling in the knees. On 02/17/04 I took her to a rhemo. who

stated he would not call hypermobility EDS III. Stating he sees EDS

patients who can dislocated when asked and we have no right to call

her a EDS patient. Do you have to have dislocation to have EDS type

III. can make something like a lump on her shoulder and her

hips. He states is is muscle not a dislocation. He states her joints

hurt because she might have arthrist She does have mvp. Her gentics

provider is stating ok the proivder must only see adults and not

young children so take her to pain managment. I am afraid to take her

to anyone else. She is 12 years old and is really upset because some

say yes and others state no. Has anyone else gone through this "

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