RE: Ehlers Danlos type III

[Guest guest]

Steph,

I believe there is testing for EDS. My son was tested for it (came back negative). A blood sample was sent to University if Washington in Seattle.

Connie

Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit more flexible, but we will continue to follow up until we are sure everything's all good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

[Guest guest]

Steph-

I don't have any experience with ED III; but I am wishing you and Noelle the very best. Hang in. ~Krista

Subject: Ehlers Danlos type IIITo: infantile_scoliosis Date: Friday, May 15, 2009, 3:12 AM

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit more flexible, but we will continue to follow up until we are sure everything's all

good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

[Guest guest]

I think you are right, but not for type 3 at this point..... I will look into that further though... Thanks for responding! Steph

Subject: Re: Ehlers Danlos type IIITo: infantile_scoliosis Date: Friday, May 15, 2009, 3:33 AM

Steph,I believe there is testing for EDS. My son was tested for it (came back negative). A blood sample was sent to University if Washington in Seattle.Connie [infantile_scoliosi s] Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit more flexible, but we will continue to follow up until we are sure everything's all

good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

We found the real 'Hotel California' and the 'Seinfeld' diner. What will you find? Explore WhereItsAt.com.

[Guest guest]

Thanks!

From: Kauffunger <slguerra710@ yahoo.com>Subject: [infantile_scoliosi s] Ehlers Danlos type IIITo: infantile_scoliosis @yahoogroups. comDate: Friday, May 15, 2009, 3:12 AM

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit more flexible, but we will continue to follow up until we are sure everything's all

good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

[Guest guest]

Thanks for this post, Steph. It made me

think of something related to my own health. Olivia and I also have EDS. The

severity is greater with each generation (only on the female side)…..Olivia

is far more flexible than me….

You mentioned that the aorta can dialate…..Wow!

Maybe that’s what going on with my heart. Anyway, I have a cardiology

appt. on Thurs. and will definitely bring it up. Honestly, I never thought to

bring up the EDS.

Please try not worry about the EDS. While

I think the EDS has a huge role in Livs curve progression, I also believe that

its prevented her from experiencing high degrees of pain. I could be wrong

though……Just trying to find positives where I can…

Thanks for the reminder.

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Kauffunger

Sent: Thursday, May 14, 2009 9:13

PM

To: infantile_scoliosis

Subject:

Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment this

past Wed. The neuro visit went very well with no remarkable

findings.... We follow up again in 6 months. Her geneticist

suspects that both Noelle and I have a very mild form of Ehler Danlos type

III because we both have mild ligament laxity, we both had one arm

dislocation as children and I wear (or should wear) glasses. There

is no test to give a positive diagnosis at present. We need to follow

up every 3 years until she is a teen if things remain status quo. Once

she is a teen, we need to follow up regularly and have her monitored yearly

by a cardiologist at that time. Apparently, it can cause the aorta to

dilate, but that can be treated with meds. I feel in my heart that

she is fine and will be fine and that we are just characteristically a bit

more flexible, but we will continue to follow up until we are sure

everything's all good as long as we have to..... I knew this was going

to be a long journey! I haven't had time to research this on my own as

of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

[Guest guest]

Thanks for responding, . Let me know what happens at your cardiology appointment. How were you diagnosed? Any tests? I was told that there isn't a test available for EDS type 3...... Steph

Subject: RE: Ehlers Danlos type IIITo: infantile_scoliosis Date: Monday, May 18, 2009, 9:32 PM

Thanks for this post, Steph. It made me think of something related to my own health. Olivia and I also have EDS. The severity is greater with each generation (only on the female side)…..Olivia is far more flexible than me….

You mentioned that the aorta can dialate…..Wow! Maybe that’s what going on with my heart. Anyway, I have a cardiology appt. on Thurs. and will definitely bring it up. Honestly, I never thought to bring up the EDS..

Please try not worry about the EDS. While I think the EDS has a huge role in Livs curve progression, I also believe that its prevented her from experiencing high degrees of pain. I could be wrong though……Just trying to find positives where I can…

Thanks for the reminder.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of KauffungerSent: Thursday, May 14, 2009 9:13 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit

more flexible, but we will continue to follow up until we are sure everything's all good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph

[Guest guest]

Blood and skin biopsy. Back then, there

were 11 classifications of EDS and they felt that I had type 6. The new

classifications will definitely throw me out of type 11. I’ll let you know

what happens.

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Kauffunger

Sent: Monday, May 18, 2009 7:43 PM

To: infantile_scoliosis

Subject: RE:

Ehlers Danlos type III

Thanks for responding, . Let me know

what happens at your cardiology appointment. How were you

diagnosed? Any tests? I was told that there isn't a test

available for EDS type 3...... Steph

From: Hyatt <heatherinfantilescoliosis (DOT) org>

Subject: RE: Ehlers Danlos type III

To: infantile_scoliosis

Date: Monday, May 18, 2009, 9:32 PM

Thanks for this post, Steph. It

made me think of something related to my own health. Olivia and I also

have EDS. The severity is greater with each generation (only on the

female side)…..Olivia is far more flexible than me….

You mentioned that the aorta can

dialate…..Wow! Maybe that’s what going on with my heart. Anyway,

I have a cardiology appt. on Thurs. and will definitely bring it up.

Honestly, I never thought to bring up the EDS..

Please try not worry about the

EDS. While I think the EDS has a huge role in Livs curve progression, I

also believe that its prevented her from experiencing high degrees of

pain. I could be wrong though……Just trying to find positives where I

can…

Thanks for the reminder.

HRH

From:

infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@

yahoogroups. com] On Behalf Of

Kauffunger

Sent: Thursday, May 14, 2009

9:13 PM

To: infantile_scoliosis

@yahoogroups. com

Subject: [infantile_scoliosi s]

Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment

this past Wed. The neuro visit went very well with no remarkable

findings.... We follow up again in 6 months. Her geneticist

suspects that both Noelle and I have a very mild form of Ehler Danlos type

III because we both have mild ligament laxity, we both had one

arm dislocation as children and I wear (or should wear) glasses.

There is no test to give a positive diagnosis at present. We need to

follow up every 3 years until she is a teen if things remain status

quo. Once she is a teen, we need to follow up regularly and have her

monitored yearly by a cardiologist at that time. Apparently, it can

cause the aorta to dilate, but that can be treated with meds. I

feel in my heart that she is fine and will be fine and that we are just

characteristically a bit more flexible, but we will continue to follow up

until we are sure everything's all good as long as we have to..... I

knew this was going to be a long journey! I haven't had time to

research this on my own as of yet, so if any of you have any experience

with this, please share!

Thanks,

Steph

[Guest guest]

Okay... I didn't realize there were so many types out there. Our geneticist has told us that there is no testing for EDS III at present. Please keep me posted and if you can forward me any links you have for EDS that would be greatly appreciated. Feel better! Steph

From: Hyatt <heather@infantilesc oliosis.org>Subject: RE: [infantile_scoliosi s] Ehlers Danlos type IIITo: infantile_scoliosis @yahoogroups. comDate: Monday, May 18, 2009, 9:32 PM

Thanks for this post, Steph. It made me think of something related to my own health. Olivia and I also have EDS. The severity is greater with each generation (only on the female side)…..Olivia is far more flexible than me….

You mentioned that the aorta can dialate…..Wow! Maybe that’s what going on with my heart. Anyway, I have a cardiology appt. on Thurs. and will definitely bring it up. Honestly, I never thought to bring up the EDS...

Please try not worry about the EDS. While I think the EDS has a huge role in Livs curve progression, I also believe that its prevented her from experiencing high degrees of pain. I could be wrong though……Just trying to find positives where I can…

Thanks for the reminder.

HRH

From: infantile_scoliosis @yahoogroups. com [mailto:infantile_ scoliosis@ yahoogroups. com] On Behalf Of KauffungerSent: Thursday, May 14, 2009 9:13 PMTo: infantile_scoliosis @yahoogroups. comSubject: [infantile_scoliosi s] Ehlers Danlos type III

Hi Everyone,

Noelle had her Neuro and geneticist appointment this past Wed. The neuro visit went very well with no remarkable findings.... We follow up again in 6 months. Her geneticist suspects that both Noelle and I have a very mild form of Ehler Danlos type III because we both have mild ligament laxity, we both had one arm dislocation as children and I wear (or should wear) glasses. There is no test to give a positive diagnosis at present. We need to follow up every 3 years until she is a teen if things remain status quo. Once she is a teen, we need to follow up regularly and have her monitored yearly by a cardiologist at that time. Apparently, it can cause the aorta to dilate, but that can be treated with meds. I feel in my heart that she is fine and will be fine and that we are just characteristically a bit

more flexible, but we will continue to follow up until we are sure everything's all good as long as we have to..... I knew this was going to be a long journey! I haven't had time to research this on my own as of yet, so if any of you have any experience with this, please share!

Thanks,

Steph