Introducing Myself, re Hypermobile EDS, OI, POTS, ADHD, LD

[Guest guest]

I am a 50ish parent with a 17 yr. old dtr. diagnosed in Jan, 2004 with

Hypermobile Type EDS II ,Orthostatic Intolerance, POTS, and neuropathy

by Dr. Blair Grubb in Toledo Ohio. We live in Toronto (Scarborough),

Canada. Despite my daughter walking on her toes since 18 mos. and

seeing numerous doctors plus specialists at Sick Children's Hosp.

Toronto, plus finally having an Achilles tendon lengthening age 12 by

well known pediatric orthopedic surgeon as well as seeing a genteticist

re possible Elhers Danlos Syndrome, no doctors would provide information

or recognition of hypermobility... also has chondromalacia patella plus

TMJ and neck problems. Despite my intensive queries no doctor would

provide information that loose or lax ligaments were evident.

I am so, so disappointed in doctor care we have received, i.e. not

received. My gut feeling is that EDS is very, very well hidden from

patients. After reading the Hypotonia website I realize my daughter had

low tone since infancy...so sad we did not receive proper care and

guidance re school and activity.

We are presently pursuing care re OI and Pots from a Hamilton

cardiologist suggested by Dr. Grubb and medications he suggested are

helping somewhat but I can see this is going to be a long, long haul.

It has been shocking to me to have to work so hard and so long to obtain

a muinimum standard of care and information when living in a highly

urban and specialized area like Toronto, unbielievable really.

Could someone supply me with the names of competent (knowledgeable),

understanding rheumatologists, dental specialists for TMJ and bracing

specialists. My daughter is complaining that her back feels weak and is

asking me for a back support of some kind but I think it should be

recommended by someone knowledgable. I have been reading the list re

osteopathic doctors. Are they covered by Canadian standard health care

coverage as we have no additional health plan and my dtr's. meds are

already breaking the budget.

When I read of the type and amt.of pain many of you with Hypermobile EDS

endure it frightens me re my dtr's prognosis. She already has lots of

distended veins in the arches of her feet and a marfanoid habitus.

I suspect the EDS comes through my husband as my dtr. has identical feet

to his plus he has had a trick knee since his twenties, very poor

handwriting plus abdominal hernia and de spots as

described at the following web site:

http://marge.com/hypermobility/messages/44/481.html?1008533525

Thankfully my husband does not have the marfanoid habitus but we have

none of his family history available to us because he was adopted. His

mother died at age 28, supposedly of T.B...strange that a 28 yr. old

treated with antibiotics would not survive T.B.

Sorry for the long story, but any and all suggestions or guidance will

be entertained as I see you folks have first hand experience.

With thanks, Bernie