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

[Guest guest]

Hi Bernie!

I live in Pembroke, Ontario but saw several doctors in Toronto

regarding hypermobility syndrome and ehlers danlos syndrome type 3.

I saw a rheumy from Sunnybrook who was all right, but had a pretty

rotten experience at Sick Kids. My family and I drove 4.5 hours to

get to 'the best' hospital, I was held as inpatient for 5 days but I

was definitly not a priority in that place and recieved substandard

care from the genetics team and worse from the pain team. I came out

of that place a lot worse than when I went in, and they were going

to 'follow' me through tele health and they never did get that

going. I won't even mention the 'family meeting' my sister had to

take off work to come to that they decided at the last minute they

were too busy to hold, or the $700 my parents were out thanks to

hotel bills, food, and gasoline to do the whole thing. Enough of

that....

I just wanted to say I completely understand where you and your

daughter are 'coming from'. I'm 19yrs and have 'systemic HMS' or

hypermobile EDS (working on getting a final diagnosis) as well as

severe osteopenia/start of osteoporosis, chondromalacia patellae (it

took 4 surgeons and an arthroscopy to get the chondro diagnosed, and

they still can't help me with it!!!), and osteoarthritis resulting

from the hypermobility in more joints than I'd like to count. Anyway,

Since moving to Pembroke (from North Bay) I've got a wonderful GP

whose been an absolute gem in supporting and handling my care and a

fabulous very HMS/EDS knowledgeable physiotherapist that I drive 2.5

hours one way every month to see as physio for hypermobility seems to

be the only option for a chance at improvement. I too am on the hunt

for a good rheumatologist and geneticist.

If you'd like to chat more off list I'd be more than happy too! Just

reading your post I couldn't help but nod my head to alot you

said!!! Big (((HUGS))) and welcome to CEDA! Hang in there, and you

and your daughter are definitly NOT alone!

-Rhea

PS. How disgusting that you had to travel all the bloody way down to

Toledo to get diagnosed!!!!!!!!!!!!! I hope that didn't put you out

of pocket too much... I sincerely hope you find a great doctor. It

just breaks my heart that there are so many people have to struggle

along needlessly because we're stuck in a country of HMS and EDS

ignorant physicians! If you would like the name of the

physiotherapist I see (he's very gentle, *will not* hurt your

daughter, is kind, and is great at assessing and treating a

problem)

[Guest guest]

Hi Bernie,

I am sorry to hear of your experiences at Sick Kids. I have heard so many

reports of similar experiences over the years, and quite a few people have

been totally misdiagnosed at their genetics department as well. It's sad.

You are among friends now, welcome and ask away!

Here is our temporary website location for you to peek as well:

http://members.rogers.com/ceda2/

Jill -Hand

President and Founder,

The Canadian Ehlers Danlos Association

www.ceda.ca

[Guest guest]

Hi Bernie,

I am sorry to hear of your experiences at Sick Kids. I have heard so many

reports of similar experiences over the years, and quite a few people have

been totally misdiagnosed at their genetics department as well. It's sad.

You are among friends now, welcome and ask away!

Here is our temporary website location for you to peek as well:

http://members.rogers.com/ceda2/

Jill -Hand

President and Founder,

The Canadian Ehlers Danlos Association

www.ceda.ca

[Guest guest]

Hi Bernie,

I am sorry to hear of your experiences at Sick Kids. I have heard so many

reports of similar experiences over the years, and quite a few people have

been totally misdiagnosed at their genetics department as well. It's sad.

You are among friends now, welcome and ask away!

Here is our temporary website location for you to peek as well:

http://members.rogers.com/ceda2/

Jill -Hand

President and Founder,

The Canadian Ehlers Danlos Association

www.ceda.ca

[Guest guest]

.... also has chondromalacia patella plus TMJ and neck problems.

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.

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

breaking the budget.

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,

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

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

----------------

Long post, so this will be fairly long reply. Right up front, the

number of horror stories this list could put together about totally

inadequate care and treatment over the years could, and probably

should, fill a book. Feel free to vent at any time ... we are all

used to it.

You can expect a few responses to your post as different folks jump

in with areas/subjects they can each address. (You can check my

background bio by pulling up my welcome to Judith and Robin - post

number 45362 over the weekend).

Just as further bio info, my focus the last couple of years has been

on researching alternative therapies that, while not curing, might

at least alleviate some of the symptoms of EDS. Particular emphasis

has been on identifying things that can be done for self-help, at

home, without having to constantly run to the ER, visit medical

specialists, or take expensive medications. As a few folks on the

list who have tried some of the suggestions can attest, they work.

Right up front, and at the risk of offending anyone on the list

involved with the dental profession, TMJ is rarely fixed by dental

specialists and is not infrequently caused by them. A very common

cause of TMJ is teenage braces. And the reason for my broad comment

is that the actual cause of TMJ might have absolutely nothing to do

with the mouth itself. I have had some first hand experience

working on folks with TMJ and have had good results using three

different modalities at different times: Cranialsacral Therapy,

Polarity Therapy and Jin Shin Do Acupressure. Cranialsacral is not,

unfortunately, something I can walk someone through via email. I

can, however, do it for the Polarity and Acupressure releases.

From what you describe about your daughter having TMJ, neck

problems, and complaints about a weak back, I suspect that they are

probably all related. I obviously can't tell without doing an

actual assessment, but your description is certainly suggestive. And

because of this, I would recommend considering seeing someone

trained in Cranialsacral Therapy. It is not uncommon with this work

to get 90 percent of the benefit in just one or two sessions, with

additional treatments just fine tuning things.

As for the weak back issue, has she been checked for scoliosis,

lordosis or kyphosis? These are just long technical names for

abnormal side to side, low back, and upper back spinal curavtures.

If she has and any of them are present, the next question would be

whether it is structural or functional. Structural refers to a

deformity of the actual spine. Functional means that the seeming

deformity is actually caused by contracted muscles or fascial

restrictions pulling the spine out of alignment. Functional problems

are much easier to treat than structural and can be helped by a

number of massage and/or bodywork techniques.

The chondromalcia patella syndrome you mention just means an

improperly tracking knee cap. Again, there are massage and bodywork

techniques that can help. In addition, I have found a Polarity

technique called the X technique to be extremely effective. I use it

at home all the time, particularly when my wife's knee goes all

wonky on her. It is also extremely effective for knocking felt pain

without having to resort to meds, as more than a couple of the list

can attest. More importantly, it is easy to learn and can be done

at home.

You are probably correct about it coming from your husband. My

daughter accuses me of giving it to her. And I can relate to your

husbands trick knees - I have had the same problem and also starting

in my early 20s. If it still bothers him, that X technique should

work well for him also.

Do not ever feel like you need to apologize to the list, even if you

just need to let off steam. That's what we are here for.

If you want more info on some of the alternative options, and/or

help in finding practitioners, let me know. You can either reply by

open post or hit me with an off-list email.

[Guest guest]

.... also has chondromalacia patella plus TMJ and neck problems.

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.

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

breaking the budget.

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,

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

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

----------------

Long post, so this will be fairly long reply. Right up front, the

number of horror stories this list could put together about totally

inadequate care and treatment over the years could, and probably

should, fill a book. Feel free to vent at any time ... we are all

used to it.

You can expect a few responses to your post as different folks jump

in with areas/subjects they can each address. (You can check my

background bio by pulling up my welcome to Judith and Robin - post

number 45362 over the weekend).

Just as further bio info, my focus the last couple of years has been

on researching alternative therapies that, while not curing, might

at least alleviate some of the symptoms of EDS. Particular emphasis

has been on identifying things that can be done for self-help, at

home, without having to constantly run to the ER, visit medical

specialists, or take expensive medications. As a few folks on the

list who have tried some of the suggestions can attest, they work.

Right up front, and at the risk of offending anyone on the list

involved with the dental profession, TMJ is rarely fixed by dental

specialists and is not infrequently caused by them. A very common

cause of TMJ is teenage braces. And the reason for my broad comment

is that the actual cause of TMJ might have absolutely nothing to do

with the mouth itself. I have had some first hand experience

working on folks with TMJ and have had good results using three

different modalities at different times: Cranialsacral Therapy,

Polarity Therapy and Jin Shin Do Acupressure. Cranialsacral is not,

unfortunately, something I can walk someone through via email. I

can, however, do it for the Polarity and Acupressure releases.

From what you describe about your daughter having TMJ, neck

problems, and complaints about a weak back, I suspect that they are

probably all related. I obviously can't tell without doing an

actual assessment, but your description is certainly suggestive. And

because of this, I would recommend considering seeing someone

trained in Cranialsacral Therapy. It is not uncommon with this work

to get 90 percent of the benefit in just one or two sessions, with

additional treatments just fine tuning things.

As for the weak back issue, has she been checked for scoliosis,

lordosis or kyphosis? These are just long technical names for

abnormal side to side, low back, and upper back spinal curavtures.

If she has and any of them are present, the next question would be

whether it is structural or functional. Structural refers to a

deformity of the actual spine. Functional means that the seeming

deformity is actually caused by contracted muscles or fascial

restrictions pulling the spine out of alignment. Functional problems

are much easier to treat than structural and can be helped by a

number of massage and/or bodywork techniques.

The chondromalcia patella syndrome you mention just means an

improperly tracking knee cap. Again, there are massage and bodywork

techniques that can help. In addition, I have found a Polarity

technique called the X technique to be extremely effective. I use it

at home all the time, particularly when my wife's knee goes all

wonky on her. It is also extremely effective for knocking felt pain

without having to resort to meds, as more than a couple of the list

can attest. More importantly, it is easy to learn and can be done

at home.

You are probably correct about it coming from your husband. My

daughter accuses me of giving it to her. And I can relate to your

husbands trick knees - I have had the same problem and also starting

in my early 20s. If it still bothers him, that X technique should

work well for him also.

Do not ever feel like you need to apologize to the list, even if you

just need to let off steam. That's what we are here for.

If you want more info on some of the alternative options, and/or

help in finding practitioners, let me know. You can either reply by

open post or hit me with an off-list email.

[Guest guest]

.... also has chondromalacia patella plus TMJ and neck problems.

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.

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

breaking the budget.

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,

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

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

----------------

Long post, so this will be fairly long reply. Right up front, the

number of horror stories this list could put together about totally

inadequate care and treatment over the years could, and probably

should, fill a book. Feel free to vent at any time ... we are all

used to it.

You can expect a few responses to your post as different folks jump

in with areas/subjects they can each address. (You can check my

background bio by pulling up my welcome to Judith and Robin - post

number 45362 over the weekend).

Just as further bio info, my focus the last couple of years has been

on researching alternative therapies that, while not curing, might

at least alleviate some of the symptoms of EDS. Particular emphasis

has been on identifying things that can be done for self-help, at

home, without having to constantly run to the ER, visit medical

specialists, or take expensive medications. As a few folks on the

list who have tried some of the suggestions can attest, they work.

Right up front, and at the risk of offending anyone on the list

involved with the dental profession, TMJ is rarely fixed by dental

specialists and is not infrequently caused by them. A very common

cause of TMJ is teenage braces. And the reason for my broad comment

is that the actual cause of TMJ might have absolutely nothing to do

with the mouth itself. I have had some first hand experience

working on folks with TMJ and have had good results using three

different modalities at different times: Cranialsacral Therapy,

Polarity Therapy and Jin Shin Do Acupressure. Cranialsacral is not,

unfortunately, something I can walk someone through via email. I

can, however, do it for the Polarity and Acupressure releases.

From what you describe about your daughter having TMJ, neck

problems, and complaints about a weak back, I suspect that they are

probably all related. I obviously can't tell without doing an

actual assessment, but your description is certainly suggestive. And

because of this, I would recommend considering seeing someone

trained in Cranialsacral Therapy. It is not uncommon with this work

to get 90 percent of the benefit in just one or two sessions, with

additional treatments just fine tuning things.

As for the weak back issue, has she been checked for scoliosis,

lordosis or kyphosis? These are just long technical names for

abnormal side to side, low back, and upper back spinal curavtures.

If she has and any of them are present, the next question would be

whether it is structural or functional. Structural refers to a

deformity of the actual spine. Functional means that the seeming

deformity is actually caused by contracted muscles or fascial

restrictions pulling the spine out of alignment. Functional problems

are much easier to treat than structural and can be helped by a

number of massage and/or bodywork techniques.

The chondromalcia patella syndrome you mention just means an

improperly tracking knee cap. Again, there are massage and bodywork

techniques that can help. In addition, I have found a Polarity

technique called the X technique to be extremely effective. I use it

at home all the time, particularly when my wife's knee goes all

wonky on her. It is also extremely effective for knocking felt pain

without having to resort to meds, as more than a couple of the list

can attest. More importantly, it is easy to learn and can be done

at home.

You are probably correct about it coming from your husband. My

daughter accuses me of giving it to her. And I can relate to your

husbands trick knees - I have had the same problem and also starting

in my early 20s. If it still bothers him, that X technique should

work well for him also.

Do not ever feel like you need to apologize to the list, even if you

just need to let off steam. That's what we are here for.

If you want more info on some of the alternative options, and/or

help in finding practitioners, let me know. You can either reply by

open post or hit me with an off-list email.

[Guest guest]

Welcome, Bernie!

> 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.

From everything I have heard, Dr. Grubb is a great one to work with.

(Lonestar) on this list is an excellent resource for info on POTS/OI info.

I have had mild Orthostatic Intolerance since I was 15, but it's well under

control these days.

> 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.

Did the actually test for Marfan's as well?

-Barb

[Guest guest]

Welcome, Bernie!

> 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.

From everything I have heard, Dr. Grubb is a great one to work with.

(Lonestar) on this list is an excellent resource for info on POTS/OI info.

I have had mild Orthostatic Intolerance since I was 15, but it's well under

control these days.

> 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.

Did the actually test for Marfan's as well?

-Barb

[Guest guest]

Bernadette

Hello & welcome to the CEDA family. You will find lots of support,

information advice & much more. This is a very unique group of people. I

myself have only been on the list for a few months. I have been dx with EDS

vascular and found this list to be a life saver for me. Hope you do too!!

Sorry you arent satisfied with the docs at Sick Kids. I always thought it to

be a great hospital but my kids were only there for eye care. I used to live

in T.O. but now reside in Calgary Alberta.

Take Care

Betty

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

> 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

>

>

>

[Guest guest]

Bernadette

Hello & welcome to the CEDA family. You will find lots of support,

information advice & much more. This is a very unique group of people. I

myself have only been on the list for a few months. I have been dx with EDS

vascular and found this list to be a life saver for me. Hope you do too!!

Sorry you arent satisfied with the docs at Sick Kids. I always thought it to

be a great hospital but my kids were only there for eye care. I used to live

in T.O. but now reside in Calgary Alberta.

Take Care

Betty

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

> 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

>

>

>

[Guest guest]

Bernadette

Hello & welcome to the CEDA family. You will find lots of support,

information advice & much more. This is a very unique group of people. I

myself have only been on the list for a few months. I have been dx with EDS

vascular and found this list to be a life saver for me. Hope you do too!!

Sorry you arent satisfied with the docs at Sick Kids. I always thought it to

be a great hospital but my kids were only there for eye care. I used to live

in T.O. but now reside in Calgary Alberta.

Take Care

Betty

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

> 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

>

>

>

[Guest guest]

Hi Bernie,

Welcome to the CEDA family! I am so sorry that you have had such a rough

time finding help for your daughter.

My sons (7.5 and 10) and I all have hypermobile EDS. It has been a real

struggle to find knowledgable medical professionals to support my kids. I

was diagnosed at McMaster and my kids were diagnosed at Sick Kids but we

already knew what we were dealing with because of my diagnosis. For joint

issues the boys are followed by Dr. Biggar at Bloorview. When we need

braces and splints we have been very lucky to have a qualified orthetist in

Guelph who has been fantastic. His website is: www.appliedbiomechanics.com

I am not as familiar with the adult services but you might want to try

contacting the March of Dimes to see if there is any financial help to cover

some of your expenses - bracing can be very expensive.

C. - Guelph, Ontario

[Guest guest]

Hi Bernie,

Welcome to the CEDA family! I am so sorry that you have had such a rough

time finding help for your daughter.

My sons (7.5 and 10) and I all have hypermobile EDS. It has been a real

struggle to find knowledgable medical professionals to support my kids. I

was diagnosed at McMaster and my kids were diagnosed at Sick Kids but we

already knew what we were dealing with because of my diagnosis. For joint

issues the boys are followed by Dr. Biggar at Bloorview. When we need

braces and splints we have been very lucky to have a qualified orthetist in

Guelph who has been fantastic. His website is: www.appliedbiomechanics.com

I am not as familiar with the adult services but you might want to try

contacting the March of Dimes to see if there is any financial help to cover

some of your expenses - bracing can be very expensive.

C. - Guelph, Ontario

[Guest guest]

Welcome Bernadette! You will find lots of information and friends here on

the list.

I share in your frustration about misdiagnosis and lack of diagnosis. It

seems inconceivable in this day and age that proper health care and diagnosis is

so hard to come by for so many of us. Even more frustrating when it is your

child who has suffered.

Please know you are not alone. I think the most striking commonality for

those of us with EDS is this lack of medical support. Hopefully for you and

your

daughter you can get the proper care that she needs now that you know. Hang

in there.

Hugs,

Sue Ginley

Buffalo, NY

[Guest guest]

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

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.

Welcome Bernadette.

My name is Bonnie Heintskill, age 48 with a variant of EDS as well as my 15.5

year old with the same type of EDS. We have symptoms from many types of EDS.

It sounds like your daughter had sensory integration disorders which causes a

lot of the symptoms you have described.

There is a great book, called the Out of Sync Child by Carol Stock Kranowitz

Because of our loose joints, we aren't getting the proper input into our

bodies/brains to integrate all the sensory info we get...

[Guest guest]

Welcome to the family Bernadette! I think you'll love it here - I know I

do! I'm 53, Hypermobile EDS, 2 grown children, 1 cock-a-poo who thinks he's

human and head of the family, and live in Omaha, NE.

Love Lana

[Guest guest]

Hi Sue: Thanks for the welcome. I just cannot fathom the purpose

behind withholding valuable information and understanding from the

parent or patient. There is no logic in it that I can grasp. My hope

is that I can learn a great deal more of how HEDS with OI and POTS works

so that I am not always scrambling to cope with the new issues that

arise. Perhaps the advent of internet communication has blown the whole

lid off of knowledge that doctors previously hoarded in a patronizing

way. It sure gets them anxious when I keep presenting the research re

EDS. Our confirmation of diagnosis by Dr. Grubb was worth every penny.

It has been my constant reading of sites on dysautonomia, POTS and OI

that has got me through this and provided so much info to guide and

understand my daughter. God bless every one of those folks who work on

the sites and support groups. We will change the future for other

EDSrs.

Regards, Bernie

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

Welcome Bernadette! You will find lots of information and friends here

on

the list.

I share in your frustration about misdiagnosis and lack of diagnosis.

It

seems inconceivable in this day and age that proper health care and

diagnosis is

so hard to come by for so many of us. Even more frustrating when it is

your

child who has suffered.

Please know you are not alone. I think the most striking commonality

for

those of us with EDS is this lack of medical support. Hopefully for you

and your

daughter you can get the proper care that she needs now that you know.

Hang

in there.

Hugs,

Sue Ginley

Buffalo, NY

To learn more about EDS, visit our website: http://www.ceda.ca

_____

[Guest guest]

RE: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

Welcome to the family Bernadette! I think you'll love it here - I know

I

do! I'm 53, Hypermobile EDS, 2 grown children, 1 cock-a-poo who thinks

he's

human and head of the family, and live in Omaha, NE.

Love Lana

Hi Lana: I am having one heck of a time learning how to use this

computer......a mom will do anything for her kid huh?

I am trying to figure out which HEDS EDSrs experience fainting, low

blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone come

up with a determining factor? Any suggestions anyone? I am beginning

to wonder

r if my dtr. has an overlap with Marfans Syndrome.

Regards, Bernie

P.S. In my 20's I always thought Omaha Nebraska would be such a romantic

place. So nice to hear from you.

[Guest guest]

RE: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

Welcome to the family Bernadette! I think you'll love it here - I know

I

do! I'm 53, Hypermobile EDS, 2 grown children, 1 cock-a-poo who thinks

he's

human and head of the family, and live in Omaha, NE.

Love Lana

Hi Lana: I am having one heck of a time learning how to use this

computer......a mom will do anything for her kid huh?

I am trying to figure out which HEDS EDSrs experience fainting, low

blood pressure(lightheadedness, dizzyness) OI or POTS. Has anyone come

up with a determining factor? Any suggestions anyone? I am beginning

to wonder

r if my dtr. has an overlap with Marfans Syndrome.

Regards, Bernie

P.S. In my 20's I always thought Omaha Nebraska would be such a romantic

place. So nice to hear from you.

[Guest guest]

In a message dated 3/17/04 4:58:48 AM Eastern Standard Time,

bfhalkett@... writes:

<< Both Meaghan's Developmental Paediatrician (treats her ADHD and LD) and

her regular paediatrician were visibly upset, really, really anxious

when I provided them with Dr. Grubbs diagnosis and the requests for

specialist referrals. It was like they knew they were caught out and

were very embarrassed. >>

this happened with the pediatrician I was taking my children to too. He felt

really bad as he was my pediatrician when I was young. My mother asked him

more than one time, " why does she have all these bruises, and look at those

dark circles under her eyes " He didn't want to acknowledge it and treat it, for

whatever reason. So......I switched and we love our new pediatrician who is

also a pediatric rheumatologist. Not only is she a great doc, she has become

involved in our local support group, allows me to put support group activity

noticed up in her office, and she is speaking at the conference! She also

assigned me one of her office managers to assist in getting office volunteers

for

the conference. You know sometimes things really seem bad here, but I remember

how truly blessed I am with lots of things.....she really has been a Godsend.

If you decide to come to the conference there will be stuff for you as well

as your daughter. I am bringing my daughter Ginny, who also has EDS, knee

problems off and on, and is also LD. Uhhhh......they would probably be like two

peas in a pod there, LOL!!!!! We have a suite set up as a hospitality room and

felt this would be a great place the teens can hang out, eat junk, drink pop,

listen to music, during workshop sessions. If they don't want to go to

sessions, that is. Some do actually attend some of the sessions and this year

we

have such a variety of sessions I'm sure even the teenagers will enjoy them,

like the Tai Chi, Alberto Friedmann's session for the kids (all the kids love

him), he won a Gold Medal in the World Championships in Martial Arts, and has

EDS.....the kids really relate to him and love watching him do his karate stuff,

water therapy, music therapy, a magician, the list goes on. And the fact

that the teens will have the ability to just hang out in a specific place is

nice. In the past all the kids get along, love hanging out at the pool, from

little ones, right on up to the teens. Big kids were playing with little ones,

it

is wonderful to watch. I think people with this often times are so humbled,

so compassionate from their experiences that even teens take little ones under

their wings.

Ginny would love an EDs pen pal. They seem to have a lot in common.....knee

stuff, POTS, OI,......I will send you Ginny's email off list, and she will be

thrilled.

Did anyone else want a pen pal for their teen girls? I know someone just

asked recently, but I can't remember who? , does either or both of yur

girls want to have an email pen pal? Let me know, and I will send Ginny's info

along, OK?

Hugs,

Sue Ginley

Buffalo, NY

[Guest guest]

In a message dated 3/17/04 4:58:48 AM Eastern Standard Time,

bfhalkett@... writes:

<< Both Meaghan's Developmental Paediatrician (treats her ADHD and LD) and

her regular paediatrician were visibly upset, really, really anxious

when I provided them with Dr. Grubbs diagnosis and the requests for

specialist referrals. It was like they knew they were caught out and

were very embarrassed. >>

this happened with the pediatrician I was taking my children to too. He felt

really bad as he was my pediatrician when I was young. My mother asked him

more than one time, " why does she have all these bruises, and look at those

dark circles under her eyes " He didn't want to acknowledge it and treat it, for

whatever reason. So......I switched and we love our new pediatrician who is

also a pediatric rheumatologist. Not only is she a great doc, she has become

involved in our local support group, allows me to put support group activity

noticed up in her office, and she is speaking at the conference! She also

assigned me one of her office managers to assist in getting office volunteers

for

the conference. You know sometimes things really seem bad here, but I remember

how truly blessed I am with lots of things.....she really has been a Godsend.

If you decide to come to the conference there will be stuff for you as well

as your daughter. I am bringing my daughter Ginny, who also has EDS, knee

problems off and on, and is also LD. Uhhhh......they would probably be like two

peas in a pod there, LOL!!!!! We have a suite set up as a hospitality room and

felt this would be a great place the teens can hang out, eat junk, drink pop,

listen to music, during workshop sessions. If they don't want to go to

sessions, that is. Some do actually attend some of the sessions and this year

we

have such a variety of sessions I'm sure even the teenagers will enjoy them,

like the Tai Chi, Alberto Friedmann's session for the kids (all the kids love

him), he won a Gold Medal in the World Championships in Martial Arts, and has

EDS.....the kids really relate to him and love watching him do his karate stuff,

water therapy, music therapy, a magician, the list goes on. And the fact

that the teens will have the ability to just hang out in a specific place is

nice. In the past all the kids get along, love hanging out at the pool, from

little ones, right on up to the teens. Big kids were playing with little ones,

it

is wonderful to watch. I think people with this often times are so humbled,

so compassionate from their experiences that even teens take little ones under

their wings.

Ginny would love an EDs pen pal. They seem to have a lot in common.....knee

stuff, POTS, OI,......I will send you Ginny's email off list, and she will be

thrilled.

Did anyone else want a pen pal for their teen girls? I know someone just

asked recently, but I can't remember who? , does either or both of yur

girls want to have an email pen pal? Let me know, and I will send Ginny's info

along, OK?

Hugs,

Sue Ginley

Buffalo, NY

[Guest guest]

In a message dated 3/17/04 4:58:48 AM Eastern Standard Time,

bfhalkett@... writes:

<< Both Meaghan's Developmental Paediatrician (treats her ADHD and LD) and

her regular paediatrician were visibly upset, really, really anxious

when I provided them with Dr. Grubbs diagnosis and the requests for

specialist referrals. It was like they knew they were caught out and

were very embarrassed. >>

this happened with the pediatrician I was taking my children to too. He felt

really bad as he was my pediatrician when I was young. My mother asked him

more than one time, " why does she have all these bruises, and look at those

dark circles under her eyes " He didn't want to acknowledge it and treat it, for

whatever reason. So......I switched and we love our new pediatrician who is

also a pediatric rheumatologist. Not only is she a great doc, she has become

involved in our local support group, allows me to put support group activity

noticed up in her office, and she is speaking at the conference! She also

assigned me one of her office managers to assist in getting office volunteers

for

the conference. You know sometimes things really seem bad here, but I remember

how truly blessed I am with lots of things.....she really has been a Godsend.

If you decide to come to the conference there will be stuff for you as well

as your daughter. I am bringing my daughter Ginny, who also has EDS, knee

problems off and on, and is also LD. Uhhhh......they would probably be like two

peas in a pod there, LOL!!!!! We have a suite set up as a hospitality room and

felt this would be a great place the teens can hang out, eat junk, drink pop,

listen to music, during workshop sessions. If they don't want to go to

sessions, that is. Some do actually attend some of the sessions and this year

we

have such a variety of sessions I'm sure even the teenagers will enjoy them,

like the Tai Chi, Alberto Friedmann's session for the kids (all the kids love

him), he won a Gold Medal in the World Championships in Martial Arts, and has

EDS.....the kids really relate to him and love watching him do his karate stuff,

water therapy, music therapy, a magician, the list goes on. And the fact

that the teens will have the ability to just hang out in a specific place is

nice. In the past all the kids get along, love hanging out at the pool, from

little ones, right on up to the teens. Big kids were playing with little ones,

it

is wonderful to watch. I think people with this often times are so humbled,

so compassionate from their experiences that even teens take little ones under

their wings.

Ginny would love an EDs pen pal. They seem to have a lot in common.....knee

stuff, POTS, OI,......I will send you Ginny's email off list, and she will be

thrilled.

Did anyone else want a pen pal for their teen girls? I know someone just

asked recently, but I can't remember who? , does either or both of yur

girls want to have an email pen pal? Let me know, and I will send Ginny's info

along, OK?

Hugs,

Sue Ginley

Buffalo, NY

[Guest guest]

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

* Hi Bernie!

I live in Pembroke, Ontario but saw several doctors in Toronto

regarding hypermobility syndrome and ehlers danlos syndrome type 3.

I saw a rheumy from Sunnybrook who was all right, but had a pretty

rotten experience at Sick Kids. My family and I drove 4.5 hours to

get to 'the best' hospital, I was held as inpatient for 5 days but I

was definitly not a priority in that place and recieved substandard

care from the genetics team and worse from the pain team. I came out

Hi Rhea: Thank you Rhea for your support and info, and thanks to others

who responded with a welcome. I am so slow using this computer. My

ADD, LD daughter puts me totally to shame. Knowing others who struggle

with EDS to find solutions is so helpful. Rhea, who is your wonderful

G.P in Pembrke. Doctor's in the country are often more humane and

independent thinking. They have to be.

Another Ottawa Valley girl eh! That is just amazing. I grew up in

Cobden and have close family there that I visit often. I can see we

will meet in the future if that would be acceptable to you. It would be

so good for my 17 yr. old dtr. to communicate with you by e-mail. I am

still considering attending the Buffalo conference to learn..are you?

Buffalo is only a 2 hr. drive from To....closer than Toledo. The app't

with Dr. Grubb (very competent, very genuine) was worth every penny and

worth the time. The affirmation and acknowledgement provided re

mechanisms at work with Marit were so helpful. Someone who didn't

treat us like neuroitics and hypochondriacs. During his exam Dr. Grubb

was able to dislocate both Marit's shoulder joints and both hips sans a

bit of pain and with such gentlness that Marit didn't know it till he

asked her to move her hand and when she couldn't he told her. She was

shocked. Getting a diagnosis while seeing paediatric specialists at

Sick Kids was impossible for us. It was so heartbreaking when I had

essentially figured it out and had provided recent research. Very

interesting that got her initial diagnosis at McMaster and that

Dr. Grubb has referred us to a cardologist at McMaster. Obviously very

different attitudes in the two places. There have got to be political

and economic factors we have no control over that cause this

wall...quite possibly Marit has the cardiovascular problems.OI and POTS

Sick Kids can't acknowledge.

Both Meaghan's Developmental Paediatrician (treats her ADHD and LD) and

her regular paediatrician were visibly upset, really, really anxious

when I provided them with Dr. Grubbs diagnosis and the requests for

specialist referrals. It was like they knew they were caught out and

were very embarrassed. They didn't really want to comply yet they could

not refuse to make needed referrals. I have learned to pay very close

attention and read body language very carefully during Meaghan's

appointments. Copies of EDS research really throws them.

Chondromalacia patella is usually a straight forward diagnosis, usually

made by any GP. My dtr's patella bothers her very little right now, as

she has too little stamina and endurance to jump or even walk for much

distance due to POTS and OI which cause too much exhaustion. I have to

drive her to school as cold temperatures and standing for or on a bus

are too exhausting. People just do not give up their seat for a tall

teenager and they would not believe if you told them.

Marit really doesn't have a large amt. of pain in her joints other than

the back of her head but especially the neck...can't bear any pressure

to the back of her head or neck at all...even very soft pillows.hates

tight collars.becomes very dizzy and nauseated..always sleeps on the

side of her head and has done so from age of 2-3 mos. old. " Would only

settle in that position. Also finds sleeping on her stomach with head

turned to the side helps to compress her abdomen and help with blood

pressure.

If you are reading this Mike, your comments or experience would be

appreciated re the head and neck problem.

I would appreciate the name of your physio Rhea as I have contact with

a woman from Ottawa who's 15 yr. old son is hypermobile( a

contortionist) and with fine motor delay, probably HEDS and can only

stay standing for 7 minutes (obviously severe OI., I " ve seen the foot

mottling)...Mother also can't get him diagnosed, other than

Fibromyalgia. So sorry for the long long note but I have years of

frustration pent up with this screwball setup. It grieves me so! ! !

So long for now, take care, Bernie

..

[Guest guest]

Re: Introducing Myself, re Hypermobile EDS, OI, POTS,

ADHD, LD

* Hi Bernie!

I live in Pembroke, Ontario but saw several doctors in Toronto

regarding hypermobility syndrome and ehlers danlos syndrome type 3.

I saw a rheumy from Sunnybrook who was all right, but had a pretty

rotten experience at Sick Kids. My family and I drove 4.5 hours to

get to 'the best' hospital, I was held as inpatient for 5 days but I

was definitly not a priority in that place and recieved substandard

care from the genetics team and worse from the pain team. I came out

Hi Rhea: Thank you Rhea for your support and info, and thanks to others

who responded with a welcome. I am so slow using this computer. My

ADD, LD daughter puts me totally to shame. Knowing others who struggle

with EDS to find solutions is so helpful. Rhea, who is your wonderful

G.P in Pembrke. Doctor's in the country are often more humane and

independent thinking. They have to be.

Another Ottawa Valley girl eh! That is just amazing. I grew up in

Cobden and have close family there that I visit often. I can see we

will meet in the future if that would be acceptable to you. It would be

so good for my 17 yr. old dtr. to communicate with you by e-mail. I am

still considering attending the Buffalo conference to learn..are you?

Buffalo is only a 2 hr. drive from To....closer than Toledo. The app't

with Dr. Grubb (very competent, very genuine) was worth every penny and

worth the time. The affirmation and acknowledgement provided re

mechanisms at work with Marit were so helpful. Someone who didn't

treat us like neuroitics and hypochondriacs. During his exam Dr. Grubb

was able to dislocate both Marit's shoulder joints and both hips sans a

bit of pain and with such gentlness that Marit didn't know it till he

asked her to move her hand and when she couldn't he told her. She was

shocked. Getting a diagnosis while seeing paediatric specialists at

Sick Kids was impossible for us. It was so heartbreaking when I had

essentially figured it out and had provided recent research. Very

interesting that got her initial diagnosis at McMaster and that

Dr. Grubb has referred us to a cardologist at McMaster. Obviously very

different attitudes in the two places. There have got to be political

and economic factors we have no control over that cause this

wall...quite possibly Marit has the cardiovascular problems.OI and POTS

Sick Kids can't acknowledge.

Both Meaghan's Developmental Paediatrician (treats her ADHD and LD) and

her regular paediatrician were visibly upset, really, really anxious

when I provided them with Dr. Grubbs diagnosis and the requests for

specialist referrals. It was like they knew they were caught out and

were very embarrassed. They didn't really want to comply yet they could

not refuse to make needed referrals. I have learned to pay very close

attention and read body language very carefully during Meaghan's

appointments. Copies of EDS research really throws them.

Chondromalacia patella is usually a straight forward diagnosis, usually

made by any GP. My dtr's patella bothers her very little right now, as

she has too little stamina and endurance to jump or even walk for much

distance due to POTS and OI which cause too much exhaustion. I have to

drive her to school as cold temperatures and standing for or on a bus

are too exhausting. People just do not give up their seat for a tall

teenager and they would not believe if you told them.

Marit really doesn't have a large amt. of pain in her joints other than

the back of her head but especially the neck...can't bear any pressure

to the back of her head or neck at all...even very soft pillows.hates

tight collars.becomes very dizzy and nauseated..always sleeps on the

side of her head and has done so from age of 2-3 mos. old. " Would only

settle in that position. Also finds sleeping on her stomach with head

turned to the side helps to compress her abdomen and help with blood

pressure.

If you are reading this Mike, your comments or experience would be

appreciated re the head and neck problem.

I would appreciate the name of your physio Rhea as I have contact with

a woman from Ottawa who's 15 yr. old son is hypermobile( a

contortionist) and with fine motor delay, probably HEDS and can only

stay standing for 7 minutes (obviously severe OI., I " ve seen the foot

mottling)...Mother also can't get him diagnosed, other than

Fibromyalgia. So sorry for the long long note but I have years of

frustration pent up with this screwball setup. It grieves me so! ! !

So long for now, take care, Bernie

..