Group Project: Ideas for EDS Testing!?

[Guest guest]

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing when EDS

is a

possibility, and certain tests should be mentioned for doctors to obtain on

all EDSers...and additional ones for specific types. The EDNF Online Onfo

group is willing to pursue this as an official project and get the info out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what tests

do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what tests

do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what tests

do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

I think MRA's are useful for anyone with vascular issues - use as a screening to

spot problems areas that need to be watched.

Patti

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what

tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

I think MRA's are useful for anyone with vascular issues - use as a screening to

spot problems areas that need to be watched.

Patti

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what

tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

I think MRA's are useful for anyone with vascular issues - use as a screening to

spot problems areas that need to be watched.

Patti

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. Now....what

tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

Beighton hypermobility test was designed to find only specific types of

hypermobility for a research project the MD was doing. Because many MD's

glommed onto this test, many EDSers are NOT getting diagnosed if their joints

aren't flexible enough. A better tool is the Brighton (sp?) test. I know Jill

has a copy of it available.

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Echocardiograms to look for mitral valve prolapse and/or enlarged aortic

artery. Although, just like the cardiac stress test only shows a " moment in

time " , ECG's only show a moment in time too.

[Guest guest]

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

I wholeheartedly agree with Bernie!

As a child I was extremely uncordinated (still am!). I would often

complain of ankle aching (as young as 6) and my parents dismissed it

as not eating enough food containing calcium. I wasn't as able to

focus and my printing was just horrible, so I was diagnosed at the

age of 9 with ADD (no hyperactivity) which I think later on the Drs.

changed their mind and decided I didn't have it.

My mom use to play toss with me in a hope it would help my

coordination, but it didn't and I still don't have much control at

all. She use to get quite upset at me when I'd try to throw it

straight back to her but be off by 45 degrees or more! My mother was

frusterated and didn't seem to be able to understand that I didnt'

mean to throw the ball so far off course. She always was sure I did

it on purpose and would reprimand me for it. So, again I learned I

wasn't very good at things and always seemed to make my mother

angry.

My parents bought bigger grips for my pencils, but they didn't help

much, and to this day my writing is terrible and there is no way I

can write over a small paragraph at a time as my hand cramps up and

the writing becomes completely unlegible. This use to really

embarass me in school and I was always so envious of the other girls

neat writing. I was so happy as a young teen when finally all

assignments were done on the computer, although I still got

reprimanded by teachers for my 'messy' class notes.

A test I think should be done as a standard is a basic DEXA bone

density scan. I've had 4 fractures, three of them before the age of

12 and all of them upon low impact happenings! And I know I'm not

the only young person here with osteopenia!

I also had a lot of 'little' injuries. Small hurts over nothing

inparticular that would cause pain but not severe enough to go

through the bother of Drs. appt. IE/ I would be playing in a

snowbank with friends and suddenly my ankle would hurt so much I

would start crying. After a few hours it was OK again, and everyone

always assumed I was faking. I now am fairly sure those little

happenings were subluxes. I never participated in a lot of the

school yard games like Red Rover or Tag because I always got hurt,

always.

I think during a genetics visit when they ask about developement

there should be more specified questions asked specifically on

writing and coordination as those seem to be two constants

throughout.

-Rhea

[Guest guest]

In a message dated 8/29/2004 3:10:14 AM Pacific Standard Time,

bfhalkett@... writes:

What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

The only thing I've seen is the Parent/Educator Guide pamphlet put out by the

EDNF, and it helps really only for those kids already diagnosed to tell the

schools what they might have to do. Like many disorders, if the pediatrician

denies they have a problem or if the teachers don't communicate concerns with

the parents over what they see in the school environment, many kids indeed go

undiagnosed for a long time. It took from kindergarten to second grade to

figure out my son had Tourette's syndrome. It took until 5th grade to figure

out

what things my daughter shouldn't be doing in school with her EDS. The info

just wasn't there at the time for us for either disorder....and soon we found

WE were more expert about both conditions than their doctor. It IS up to us

with the knowledge to constantly share that knowledge with the educators,

doctors, etc.....and next time a kid presents in either situation with a similar

trait, hopefully the person will remember us & our children and help that family

also. I also remind ANY doctor, teacher, etc I deal with that I am ALWAYS

available to help them with other children they might spot that could be

affected

with TS or EDS. We've been able to spot and help several families with both

over the years. Generally, EDS info geared towards diagnosing

kids does have to become more accessible to doctors and schools.....and we

could indeed get the ball rolling!

Liza

[Guest guest]

In a message dated 8/29/2004 3:10:14 AM Pacific Standard Time,

bfhalkett@... writes:

What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

The only thing I've seen is the Parent/Educator Guide pamphlet put out by the

EDNF, and it helps really only for those kids already diagnosed to tell the

schools what they might have to do. Like many disorders, if the pediatrician

denies they have a problem or if the teachers don't communicate concerns with

the parents over what they see in the school environment, many kids indeed go

undiagnosed for a long time. It took from kindergarten to second grade to

figure out my son had Tourette's syndrome. It took until 5th grade to figure

out

what things my daughter shouldn't be doing in school with her EDS. The info

just wasn't there at the time for us for either disorder....and soon we found

WE were more expert about both conditions than their doctor. It IS up to us

with the knowledge to constantly share that knowledge with the educators,

doctors, etc.....and next time a kid presents in either situation with a similar

trait, hopefully the person will remember us & our children and help that family

also. I also remind ANY doctor, teacher, etc I deal with that I am ALWAYS

available to help them with other children they might spot that could be

affected

with TS or EDS. We've been able to spot and help several families with both

over the years. Generally, EDS info geared towards diagnosing

kids does have to become more accessible to doctors and schools.....and we

could indeed get the ball rolling!

Liza

[Guest guest]

In a message dated 8/29/2004 11:35:03 AM Pacific Standard Time,

bfhalkett@... writes:

There

is isolation from games, social ostracism plus all the negatives from

teachers when the teacher chooses to assume the child is not " trying

hard enough " Meaghan's biggest " hurt " was from being continually denied

enjoyment and inclusion in the fun school activities (like a craft)

because her " printing " was not completed. They live an untenable

position AND SO SELDOM RECEIVE RIGHTFUL RECOGNITION plus other kids

hugely exploit the opportunities to demean them.

THIS IS MY SOAPBOX ISSUE.

Bernie

{{{{Bernie}}}} I'm with you on this BIG TIME too. I know I was fortunate

with my kids' schools in a way....as a self-employed Mom, I was able to BE in

the classroom to assist, chaperone, interpret, advocate and observe how & why my

kids did what they did " differently " . But I walked a fine line eventually,

needing to let them take over & fight their own battles and speak up for

themselves. In both cases, by 5th grade, they were dealing with the teachers

and

the classmates almost entirely on their own. By 7th-9th, they were being called

upon to tutor and assist other kids who didn't have anyone looking out for

them during school hours. Both are considering being teachers themselves, but

plan on learning how to deal with differences within the kids in a classroom,

instead of trying to make everyone fit their mold.

One teacher had last year (8th grade) got on her case the first week

of school for her method of holding pencil/pen and writing.....and her

handwritting is actually VERY readable, just her hands " look " wierd! She

insisted

" write like a normal person " .....to which the brass redheaded advocate

replied " First I'd have to figure out how to BE a normal person " . From then

on, that teacher gave her heck and tried to grade her down on all her

exceptional, above grade-level work. 's home hospital tutor...who was

actually

that teacher's friend/softball team member in real life.....saw how unfairly she

was being graded & filed a complaint against the teacher with the school.

Fortunately most teachers seem to recognize differences and unique talents in

their students as the grades progress....that teacher was the only one in all of

middle school that ever tried to make the kids " conform " . I've had no

trouble with the high school with my son's teachers for 3 years, so I hope high

school now will allow Her to he " her! " .

Liza

[Guest guest]

In a message dated 8/29/2004 11:35:03 AM Pacific Standard Time,

bfhalkett@... writes:

There

is isolation from games, social ostracism plus all the negatives from

teachers when the teacher chooses to assume the child is not " trying

hard enough " Meaghan's biggest " hurt " was from being continually denied

enjoyment and inclusion in the fun school activities (like a craft)

because her " printing " was not completed. They live an untenable

position AND SO SELDOM RECEIVE RIGHTFUL RECOGNITION plus other kids

hugely exploit the opportunities to demean them.

THIS IS MY SOAPBOX ISSUE.

Bernie

{{{{Bernie}}}} I'm with you on this BIG TIME too. I know I was fortunate

with my kids' schools in a way....as a self-employed Mom, I was able to BE in

the classroom to assist, chaperone, interpret, advocate and observe how & why my

kids did what they did " differently " . But I walked a fine line eventually,

needing to let them take over & fight their own battles and speak up for

themselves. In both cases, by 5th grade, they were dealing with the teachers

and

the classmates almost entirely on their own. By 7th-9th, they were being called

upon to tutor and assist other kids who didn't have anyone looking out for

them during school hours. Both are considering being teachers themselves, but

plan on learning how to deal with differences within the kids in a classroom,

instead of trying to make everyone fit their mold.

One teacher had last year (8th grade) got on her case the first week

of school for her method of holding pencil/pen and writing.....and her

handwritting is actually VERY readable, just her hands " look " wierd! She

insisted

" write like a normal person " .....to which the brass redheaded advocate

replied " First I'd have to figure out how to BE a normal person " . From then

on, that teacher gave her heck and tried to grade her down on all her

exceptional, above grade-level work. 's home hospital tutor...who was

actually

that teacher's friend/softball team member in real life.....saw how unfairly she

was being graded & filed a complaint against the teacher with the school.

Fortunately most teachers seem to recognize differences and unique talents in

their students as the grades progress....that teacher was the only one in all of

middle school that ever tried to make the kids " conform " . I've had no

trouble with the high school with my son's teachers for 3 years, so I hope high

school now will allow Her to he " her! " .

Liza

[Guest guest]

Rhea:

I am so sorry you had to endure all of this. I know how deeply it

wounds in childhood to discover these severe limits. Not have vocabulary

to articulate what is happening plus being unable to change it leads to

huge frustration and sadness. I am certain this is how the phenomenal

tolerance for physical pain is acquired. Meaghan has it too.....IN

SPADES! ! ! A very small child has no other experience to measure their

pain against and very quickly thinks this is normal and doesn't

complain. Of course they have anxiety and OPPOSITIONAL DISORDER. There

is isolation from games, social ostracism plus all the negatives from

teachers when the teacher chooses to assume the child is not " trying

hard enough " Meaghan's biggest " hurt " was from being continually denied

enjoyment and inclusion in the fun school activities (like a craft)

because her " printing " was not completed. They live an untenable

position AND SO SELDOM RECEIVE RIGHTFUL RECOGNITION plus other kids

hugely exploit the opportunities to demean them.

THIS IS MY SOAPBOX ISSUE.

Bernie

Re: Group Project: Ideas for EDS Testing!?

I wholeheartedly agree with Bernie!

As a child I was extremely uncordinated (still am!). I would often

complain of ankle aching (as young as 6) and my parents dismissed it

as not eating enough food containing calcium. I wasn't as able to

focus and my printing was just horrible, so I was diagnosed at the

age of 9 with ADD (no hyperactivity) which I think later on the Drs.

changed their mind and decided I didn't have it.

My mom use to play toss with me in a hope it would help my

coordination, but it didn't and I still don't have much control at

all. She use to get quite upset at me when I'd try to throw it

straight back to her but be off by 45 degrees or more! My mother was

frusterated and didn't seem to be able to understand that I didnt'

mean to throw the ball so far off course. She always was sure I did

it on purpose and would reprimand me for it. So, again I learned I

wasn't very good at things and always seemed to make my mother

angry.

My parents bought bigger grips for my pencils, but they didn't help

much, and to this day my writing is terrible and there is no way I

can write over a small paragraph at a time as my hand cramps up and

the writing becomes completely unlegible. This use to really

embarass me in school and I was always so envious of the other girls

neat writing. I was so happy as a young teen when finally all

assignments were done on the computer, although I still got

reprimanded by teachers for my 'messy' class notes.

A test I think should be done as a standard is a basic DEXA bone

density scan. I've had 4 fractures, three of them before the age of

12 and all of them upon low impact happenings! And I know I'm not

the only young person here with osteopenia!

I also had a lot of 'little' injuries. Small hurts over nothing

inparticular that would cause pain but not severe enough to go

through the bother of Drs. appt. IE/ I would be playing in a

snowbank with friends and suddenly my ankle would hurt so much I

would start crying. After a few hours it was OK again, and everyone

always assumed I was faking. I now am fairly sure those little

happenings were subluxes. I never participated in a lot of the

school yard games like Red Rover or Tag because I always got hurt,

always.

I think during a genetics visit when they ask about developement

there should be more specified questions asked specifically on

writing and coordination as those seem to be two constants

throughout.

-Rhea

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

[Guest guest]

I got an e-mail from NIh and they are saying that they have another study

which they will put my kids in. which is a real blessing due to the fact

that my current geneticist is a complete idiot and doesn't want to diagnose

my son because she doesn't want to lable him with eds! His sholders are

already slipping in and out thank god for nih.

Hugs

Autumn

_____

From: Bernadette

Sent: Sunday, August 29, 2004 6:10 AM

To: ceda

Subject: RE: Group Project: Ideas for EDS Testing!?

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

I got an e-mail from NIh and they are saying that they have another study

which they will put my kids in. which is a real blessing due to the fact

that my current geneticist is a complete idiot and doesn't want to diagnose

my son because she doesn't want to lable him with eds! His sholders are

already slipping in and out thank god for nih.

Hugs

Autumn

_____

From: Bernadette

Sent: Sunday, August 29, 2004 6:10 AM

To: ceda

Subject: RE: Group Project: Ideas for EDS Testing!?

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

Autumn, what study is that? I'm so glad they have one for kids, but I wasn't

aware of it. I personally feel, that getting into any NIH study can only benefit

their future. I was amazed, overwhelmed, but thankful for their findings.

Cindylouwho

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

Autumn, what study is that? I'm so glad they have one for kids, but I wasn't

aware of it. I personally feel, that getting into any NIH study can only benefit

their future. I was amazed, overwhelmed, but thankful for their findings.

Cindylouwho

Group Project: Ideas for EDS Testing!?

OK, everyone.....got a project you all could help us with. It has been

suggested (thanks, Lori!) that there should be a protocol for testing

when EDS is a

possibility, and certain tests should be mentioned for doctors to obtain

on

all EDSers...and additional ones for specific types. The EDNF Online

Onfo

group is willing to pursue this as an official project and get the info

out to

doctors in print.

Now....what tests do you EDSers feel we should include as

1) Basic diagnostsic tools

2) Follow-up tests where first exams show EDS-related problems

3) specific additional tests needed for specific types.

IE....Beighton-type test for hypermobility or general EDS flexibility?

IgA immune system test for anyone?

Baseline joint xrays

MRIs for affected areas

echocardiogram

GI tract exams? (if so, what one best?)

Skin biopsy to rule out Type 4

Eye exams

Feel free to add to the list! I think developing a suggested protocol

is a

great idea to help doctors!!

Liza & Lori!!!

[Guest guest]

RE: Group Project: Ideas for EDS Testing!?

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

~~~~

Bernie - you hit the nail on the head and why I started doing the EDS Speech,

etc survey. I saw sooo many kids in schools in the short time I was there as a

substitute SLP and doing less than a year in a school full time that showed

signs of hypermobility, ADHD, autism, apraxia of speech, etc. I'm trying to

prove that there is a definite connection between EDS and speech, etc. related

issues. Once we get the first reports written and published in speech journals,

I think it will open up a whole new avenue for getting kids referred to the

proper medical professionals. Speech, physical, and occupational therapists see

kids from 20 mins to over an hour (depending on where they are seen - schools or

in clinics, hospitals)... who better to recognize the disorder than therapists

who spend so much time with them?

Bonnie

[Guest guest]

RE: Group Project: Ideas for EDS Testing!?

Liza and Lori:

Kids need to get diagnosed.....this is urgent. Kids have fine motor

delays, All kids with printing problems, toe walking (I know of 5-6 Ceda

members with toe walking),childhood co-ordination problems being

recognised but not assessed or diagnosed),

Kids cannot advocate for themselves and endure huge school problems and

EDS never mentioned to parents. Have seen sooo many ADHD kids that

actually have EDS, brain fog. What is being done to diagnose or develop

criteria for kids or who does one contact?

Bernie

~~~~

Bernie - you hit the nail on the head and why I started doing the EDS Speech,

etc survey. I saw sooo many kids in schools in the short time I was there as a

substitute SLP and doing less than a year in a school full time that showed

signs of hypermobility, ADHD, autism, apraxia of speech, etc. I'm trying to

prove that there is a definite connection between EDS and speech, etc. related

issues. Once we get the first reports written and published in speech journals,

I think it will open up a whole new avenue for getting kids referred to the

proper medical professionals. Speech, physical, and occupational therapists see

kids from 20 mins to over an hour (depending on where they are seen - schools or

in clinics, hospitals)... who better to recognize the disorder than therapists

who spend so much time with them?

Bonnie

[Guest guest]

I agree, the awareness needs to be extended to children. I dont

know how many times I have heard You dont have that at your age /

kids dont have pain / your too young for that / I wont perscribe

that to someone your age / You dont need that test and on and on. I

swear my GP thought I was a hypochondriac yet even when I was 5 or

so I would go up to my mom and tell her I needed to go to Dr.

and pester her until she made the appointment. She hated making

them as it seemed like we were there so often and generally I would

look fine at this point. Yet by the time we got to the dr I was

generally in the starting stage of a chest / sinus / lung / ear

infection all wrapped into one. So she learned quickly to trust

my 'feelings' regarding my health.

I was always reprimanded because of my writing but due to the fact

that I was 3 months my parents had all my teachers believing that I

lacked small motor skills cause of the prematureness. So after that

the teachers didnt hound me so much. My parents but all the pens

and pencils out there that said they made writing easier and stuff

but nothing worked. I was always given the notebooks with the big

lines instead of the normal lines to make my work neater. Even now

I never take the 'group' notes in classes as my writing is

horrible. Thank god for computers!! I have always been one of the

few who could actually read my writing! 9 times out of 10 I have to

get tests and handwritten assignments remarked becasue markers

couldnt read them.

I remember an incident in grade 7 that clearly stands out. We had a

male student teacher doing a few classes with us for a month. Well

on the first day we were doing laps in the gym and I rolled over on

my ankle. It hurt so I would sit down and then teh pain would

subside so I would go again until the second roll over when I would

tell him I twisted my ankle and needed to sit down. He told me

because I wasnt limping and could put weight on it (I have alwasy

weight bared on a sprained / twisted ankle!) he told me to get there

and continue on with gym. I would end up rolling over on my ankle

countless times and falling a few yet he still thought I was faking

it to get out of gym. I seriously think now that I wasnt just

twisting it, I was sprainging it minorly all the time I rolled over

(and that is why there is such bad ligament damage so that my ankle

wont heal now! Just my opinion). Well the last week he was there

one of the 'athletic' girls stepped on her ankle wrong and was

instantly in tears that she broke her ankle and went on and on.

Someone got her ice and the teacher carried her back to the other

school immediately and they sent her home to go to the doctor. She

came to school the next day walking perfectly fine as she hadnt done

and damage to it, just stepped on it wrong! I mean I was seriouly

hurt so many times through those classes but sent back out cause I

didnt 'show' my pain yet she starts crying and gets the royal

treatment.

There was also the huge 'fight' in my last year of high school to

get me a key to the elevator as the school was 3 floors and the

elavator was locked except for students and teachers really needing

it. I did eventually get it but endured quite a few accusing

glances from teachers. Also I missed so much school for illness and

was outright teased and bullied about that from teachers and peers.

I had one teacher in grade 7 who lived down the street from me and

saw me walking my dogs one night then I missed the next day because

of a cold (they hit me hard!) and in class when he was doing

attendance the day after he asked if I had stayed home to babysit

the dogs. I was so embarassed since the kids were already assuming

i was faking being sick. Thankfully I was still able to remain an

honours student throughout thanks to me being able to teach myself

difficult concepts and understand it! Sure has helped over the

years!

Any ways I have majorly veered from the main topic of what should be

done for testing. I agree of the tests before but also should have

a COMPLETE physical with their joints and xrays for baseline. Also

a holter monitor to make sure nothing is wrong with the heart. I

have also read about using lidocane in tests. I mean my GP at

school gave me two sample tubes of bedicaine (sorry not sure of the

real name, i believe it was a 3% lidocaine gel) so it is available

at a cheap cost for doctors. Just put some on and see if the

patient still feels touch in that area (for type 3 at least). I

also firmly believe that a full liver profile should be done

annually to make sure there is no damage to the liver from all the

medications tried and used. There should be a PTist doing the

entire joint evaluation recording angles of flexion and extension of

EVERY joint.

Well thats my two cents and a whole lot more

Stacey

[Guest guest]

I agree, the awareness needs to be extended to children. I dont

know how many times I have heard You dont have that at your age /

kids dont have pain / your too young for that / I wont perscribe

that to someone your age / You dont need that test and on and on. I

swear my GP thought I was a hypochondriac yet even when I was 5 or

so I would go up to my mom and tell her I needed to go to Dr.

and pester her until she made the appointment. She hated making

them as it seemed like we were there so often and generally I would

look fine at this point. Yet by the time we got to the dr I was

generally in the starting stage of a chest / sinus / lung / ear

infection all wrapped into one. So she learned quickly to trust

my 'feelings' regarding my health.

I was always reprimanded because of my writing but due to the fact

that I was 3 months my parents had all my teachers believing that I

lacked small motor skills cause of the prematureness. So after that

the teachers didnt hound me so much. My parents but all the pens

and pencils out there that said they made writing easier and stuff

but nothing worked. I was always given the notebooks with the big

lines instead of the normal lines to make my work neater. Even now

I never take the 'group' notes in classes as my writing is

horrible. Thank god for computers!! I have always been one of the

few who could actually read my writing! 9 times out of 10 I have to

get tests and handwritten assignments remarked becasue markers

couldnt read them.

I remember an incident in grade 7 that clearly stands out. We had a

male student teacher doing a few classes with us for a month. Well

on the first day we were doing laps in the gym and I rolled over on

my ankle. It hurt so I would sit down and then teh pain would

subside so I would go again until the second roll over when I would

tell him I twisted my ankle and needed to sit down. He told me

because I wasnt limping and could put weight on it (I have alwasy

weight bared on a sprained / twisted ankle!) he told me to get there

and continue on with gym. I would end up rolling over on my ankle

countless times and falling a few yet he still thought I was faking

it to get out of gym. I seriously think now that I wasnt just

twisting it, I was sprainging it minorly all the time I rolled over

(and that is why there is such bad ligament damage so that my ankle

wont heal now! Just my opinion). Well the last week he was there

one of the 'athletic' girls stepped on her ankle wrong and was

instantly in tears that she broke her ankle and went on and on.

Someone got her ice and the teacher carried her back to the other

school immediately and they sent her home to go to the doctor. She

came to school the next day walking perfectly fine as she hadnt done

and damage to it, just stepped on it wrong! I mean I was seriouly

hurt so many times through those classes but sent back out cause I

didnt 'show' my pain yet she starts crying and gets the royal

treatment.

There was also the huge 'fight' in my last year of high school to

get me a key to the elevator as the school was 3 floors and the

elavator was locked except for students and teachers really needing

it. I did eventually get it but endured quite a few accusing

glances from teachers. Also I missed so much school for illness and

was outright teased and bullied about that from teachers and peers.

I had one teacher in grade 7 who lived down the street from me and

saw me walking my dogs one night then I missed the next day because

of a cold (they hit me hard!) and in class when he was doing

attendance the day after he asked if I had stayed home to babysit

the dogs. I was so embarassed since the kids were already assuming

i was faking being sick. Thankfully I was still able to remain an

honours student throughout thanks to me being able to teach myself

difficult concepts and understand it! Sure has helped over the

years!

Any ways I have majorly veered from the main topic of what should be

done for testing. I agree of the tests before but also should have

a COMPLETE physical with their joints and xrays for baseline. Also

a holter monitor to make sure nothing is wrong with the heart. I

have also read about using lidocane in tests. I mean my GP at

school gave me two sample tubes of bedicaine (sorry not sure of the

real name, i believe it was a 3% lidocaine gel) so it is available

at a cheap cost for doctors. Just put some on and see if the

patient still feels touch in that area (for type 3 at least). I

also firmly believe that a full liver profile should be done

annually to make sure there is no damage to the liver from all the

medications tried and used. There should be a PTist doing the

entire joint evaluation recording angles of flexion and extension of

EVERY joint.

Well thats my two cents and a whole lot more

Stacey

[Guest guest]

In a message dated 8/29/2004 7:32:10 PM Pacific Standard Time,

bonnieh4455@... writes:

Bernie - you hit the nail on the head and why I started doing the EDS Speech,

etc survey. I saw sooo many kids in schools in the short time I was there as

a substitute SLP and doing less than a year in a school full time that showed

signs of hypermobility, ADHD, autism, apraxia of speech, etc. I'm trying to

prove that there is a definite connection between EDS and speech, etc. related

issues. Once we get the first reports written and published in speech

journals, I think it will open up a whole new avenue for getting kids referred

to the

proper medical professionals. Speech, physical, and occupational therapists

see kids from 20 mins to over an hour (depending on where they are seen -

schools or in clinics, hospitals)... who better to recognize the disorder than

therapists who spend so much time with them?

Bonnie

Bonnie....in our kids' cases, we never had any contact with any therapists at

all in school. They never had real physical, speech, etc issues in grade

school, except for some PE difficulties, which the teachers never believed. I

think we also need some sort of info for regular teachers also, in case that

" clumsy " kid who " writes funny " or is always falling down on the playground

needs

to be checked too. All the kids we know with EDS didn't always show enough

unusual traits until later in school, past the point where they could have been

diagnosed early!

Liza

[Guest guest]

In a message dated 8/29/2004 8:56:05 PM Pacific Standard Time,

stacey8127@... writes:

There was also the huge 'fight' in my last year of high school to

get me a key to the elevator as the school was 3 floors and the

elavator was locked except for students and teachers really needing

it. I did eventually get it but endured quite a few accusing

glances from teachers. Also I missed so much school for illness and

was outright teased and bullied about that from teachers and peers.

{{{Stacie}}}....I've stood beside my own kids & seen this same ...excuse my

french....Shit....day after day. Didn't help that at one time, her friends

knew she took karate before puberty hit.....& then her whole body fell apart.

In

8th grade, she only got to attend class for 31 days in 9 months. Only her

math teacher was on our side...because her own niece has Classical EDS and is an

invalid at age 23. STILL we couldn't get the elevator key, the PE excusals,

even the duplicate sets of heavy books until 3 months into the school year!

Tomorrow she starts high school. Because they don't assign the hospital

home program teachers for 60 days, she is DETERMINED to make it on her own.

The nurse won't meet with me yet, so no meds, notes, anything will be there for

her this first week. The doctor won't even sign a note for stuff until we

see this week what things we'll have to add, to save me treking to his office

over & over. It's 4 AM, I can't sleep, I'm listing every little thing I can

think of for her to give each teacher in the meantime....can you tell I'm

scared??!! She's worked SO hard all summer getting better & stronger....and I

am so

afraid it could come crashing down again, especially if we have to wear

ourselves out fighting for what she needs. Pray she makes it....getting to have

a

normal high school experience as much as possible means the world to her!

Liza