Re: ehler- danlos/ hypermobility- Beth

[Guest guest]

This is so interesting. My dd Anni saw a genetic specialist when she

was about 18 months old because our ped thought she might have ehlers-

danlos. The geneticist said it was arguable either way whether she

had it or not. She was very hypermobile as a little one. We are

currently waiting on a diagnosis for her. Anyway, I'm interested in

the correlation between JRA and ehlers-danlos.

-Aly

>

> Hi Beth

> We just took to see a different Physical Therapist today. He

> specializes in PRRT. You can do a search on it. He had an article

in

> the local paper and we looked it up and talked to our PT friend and

> decided to make an apt and see what it was about. He did help

Chris'

> pain for today, but doesn't know if he can really help him long

term-

> time will tell. But, he has a 27 yr old son that he feels sure has

a

> mild form of Ehler- Danlos. He thinks that we need to pursue that

line

> of thinking over anything else with at present. He said

there used

> to be, either in Nashville or Louisville, someone or some place

that was

> doing testing about Ehler's Danlos and/ or Marfan's. He didn't

know if

> there was still something going on - but thinks we need to see what

we

> can find out. He said there are many subtypes of Ehler-Danlos and

he

> thinks could fit into those- now whether that is all or maybe

> there's also some JRA going on and maybe some amplified pain- he

didn't

> know-but still thought we should look into finding someone that

> specializes in Ehler- Danlos. Anyway- don't know how this helps

you, but

> we'll keep you posted if we find anything out.

> Thanks

> Jinny (pauci?? 11)

>

[Guest guest]

Hi Jinny:

Please do keep me posted. I've read all your posts about and am amazed

how similar he and Hannah seem. Please let me know what you find out. The

person that called me last week called again on Saturday just to let me know she

is still checking things out for Hannah. She is hopeful she can find someone to

help us. I will keep you posted as well. If you have not done much research

on EDS, these 2 sites are great. The woman you see on the second site, Lynn

, is the person who has been in contact with me.

http://www.ednf.org/

http://www.ehlersdanlosnetwork.org/Advocacy.asp

Beth & Hannah, 11, unspecified arthritis with hypermobility; asthma; gerd;

migraines

Sending prayers & happy thoughts,

Beth :-)

ehler- danlos/ hypermobility- Beth

Hi Beth

We just took to see a different Physical Therapist today. He

specializes in PRRT. You can do a search on it. He had an article in

the local paper and we looked it up and talked to our PT friend and

decided to make an apt and see what it was about. He did help Chris'

pain for today, but doesn't know if he can really help him long term-

time will tell. But, he has a 27 yr old son that he feels sure has a

mild form of Ehler- Danlos. He thinks that we need to pursue that line

of thinking over anything else with at present. He said there used

to be, either in Nashville or Louisville, someone or some place that was

doing testing about Ehler's Danlos and/ or Marfan's. He didn't know if

there was still something going on - but thinks we need to see what we

can find out. He said there are many subtypes of Ehler-Danlos and he

thinks could fit into those- now whether that is all or maybe

there's also some JRA going on and maybe some amplified pain- he didn't

know-but still thought we should look into finding someone that

specializes in Ehler- Danlos. Anyway- don't know how this helps you, but

we'll keep you posted if we find anything out.

Thanks

Jinny (pauci?? 11)

[Guest guest]

Aly...I have read about jra kids having hypermobile sx. Weird huh??

mom

Re: ehler- danlos/ hypermobility- Beth

This is so interesting. My dd Anni saw a genetic specialist when she

was about 18 months old because our ped thought she might have ehlers-

danlos. The geneticist said it was arguable either way whether she

had it or not. She was very hypermobile as a little one. We are

currently waiting on a diagnosis for her. Anyway, I'm interested in

the correlation between JRA and ehlers-danlos.

-Aly

>

> Hi Beth

> We just took to see a different Physical Therapist today. He

> specializes in PRRT. You can do a search on it. He had an article

in

> the local paper and we looked it up and talked to our PT friend and

> decided to make an apt and see what it was about. He did help

Chris'

> pain for today, but doesn't know if he can really help him long

term-

> time will tell. But, he has a 27 yr old son that he feels sure has

a

> mild form of Ehler- Danlos. He thinks that we need to pursue that

line

> of thinking over anything else with at present. He said

there used

> to be, either in Nashville or Louisville, someone or some place

that was

> doing testing about Ehler's Danlos and/ or Marfan's. He didn't

know if

> there was still something going on - but thinks we need to see what

we

> can find out. He said there are many subtypes of Ehler-Danlos and

he

> thinks could fit into those- now whether that is all or maybe

> there's also some JRA going on and maybe some amplified pain- he

didn't

> know-but still thought we should look into finding someone that

> specializes in Ehler- Danlos. Anyway- don't know how this helps

you, but

> we'll keep you posted if we find anything out.

> Thanks

> Jinny (pauci?? 11)

>

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9:39 AM

[Guest guest]

Thanks for the links

also look at www.hypermobility.org

Thanks

Jinny

On Mon, 21 Jan 2008 16:02:26 -0800 (PST) Beth Yohnk

<yohnkmom@...> writes:

> Hi Jinny:

> Please do keep me posted. I've read all your posts about and

> am amazed how similar he and Hannah seem. Please let me know what

> you find out. The person that called me last week called again on

> Saturday just to let me know she is still checking things out for

> Hannah. She is hopeful she can find someone to help us. I will

> keep you posted as well. If you have not done much research on

> EDS, these 2 sites are great. The woman you see on the second site,

> Lynn , is the person who has been in contact with me.

>

> http://www.ednf.org/

> http://www.ehlersdanlosnetwork.org/Advocacy.asp

>

> Beth & Hannah, 11, unspecified arthritis with hypermobility; asthma;

> gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

>

>

> ehler- danlos/ hypermobility- Beth

>

> Hi Beth

> We just took to see a different Physical Therapist today. He

> specializes in PRRT. You can do a search on it. He had an article

> in

> the local paper and we looked it up and talked to our PT friend and

> decided to make an apt and see what it was about. He did help

> Chris'

> pain for today, but doesn't know if he can really help him long

> term-

> time will tell. But, he has a 27 yr old son that he feels sure has

> a

> mild form of Ehler- Danlos. He thinks that we need to pursue that

> line

> of thinking over anything else with at present. He said there

> used

> to be, either in Nashville or Louisville, someone or some place that

> was

> doing testing about Ehler's Danlos and/ or Marfan's. He didn't know

> if

> there was still something going on - but thinks we need to see what

> we

> can find out. He said there are many subtypes of Ehler-Danlos and he

> thinks could fit into those- now whether that is all or maybe

> there's also some JRA going on and maybe some amplified pain- he

> didn't

> know-but still thought we should look into finding someone that

> specializes in Ehler- Danlos. Anyway- don't know how this helps you,

> but

> we'll keep you posted if we find anything out.

> Thanks

> Jinny (pauci?? 11)

>

>

>

>

[Guest guest]

Jinny:

That is a great site...thank you. By the way Hannah can do all of the things

listed with ease, plus a few more not listed!

Sending prayers & happy thoughts,

Beth :-)

ehler- danlos/ hypermobility- Beth

>

> Hi Beth

> We just took to see a different Physical Therapist today. He

> specializes in PRRT. You can do a search on it. He had an article

> in

> the local paper and we looked it up and talked to our PT friend and

> decided to make an apt and see what it was about. He did help

> Chris'

> pain for today, but doesn't know if he can really help him long

> term-

> time will tell. But, he has a 27 yr old son that he feels sure has

> a

> mild form of Ehler- Danlos. He thinks that we need to pursue that

> line

> of thinking over anything else with at present. He said there

> used

> to be, either in Nashville or Louisville, someone or some place that

> was

> doing testing about Ehler's Danlos and/ or Marfan's. He didn't know

> if

> there was still something going on - but thinks we need to see what

> we

> can find out. He said there are many subtypes of Ehler-Danlos and he

> thinks could fit into those- now whether that is all or maybe

> there's also some JRA going on and maybe some amplified pain- he

> didn't

> know-but still thought we should look into finding someone that

> specializes in Ehler- Danlos. Anyway- don't know how this helps you,

> but

> we'll keep you posted if we find anything out.

> Thanks

> Jinny (pauci?? 11)

>

>

>

>