From my last posting and need to let all know where it came from.

[Guest guest]

Hello all, this posting came from the EDNF.org, look under the

section of EDS Hypermobility Type III section of their board. sorry

for not leaving the contact information in the first place.

Author: 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