Re: Where's the support for Cindy C?

[Guest guest]

--

Cindy and Dylan always have my love and support - I have been off-line for a

couple of days and am just catching up on all that has been going on.

They both have been through so much for so long -- I am just glad that the NIH

was able to recommend helpful suggestions for Dylan. Cindy - if you read this,

please know that you and Dylan are in my thoughts and prayers and if there is

anything at all that I can do to help, just let me know. Both of you - and

- just take care and rest well -- remember to take deep breaths and slow

down when you can. (My new motto when I start to get " wild " is -- let it go,

and flow like a waterfall)

Love, Patti

Where's the support for Cindy C?

Hi All, I'm hurting like hell right now and I've had pain

medication, but where's all the support for Dylan and Cindy C.?

Dylan was so sick the other day in the study, Cindy was afraid he

was going to die! She has so much to follow up on him back at home

with new Dr.'s and all the new stuff NIH recommended! She's got her

hands full and needs all our support and prayers, and love, not just

referrals to the NIH study. A few of you all responded on Ceda in

support of her and Dylan,but not all. Cindy has been there for all

of us and she needs our love, prayers and support right now!

Thanks, Love to all!

S.

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

[Guest guest]

--

Cindy and Dylan always have my love and support - I have been off-line for a

couple of days and am just catching up on all that has been going on.

They both have been through so much for so long -- I am just glad that the NIH

was able to recommend helpful suggestions for Dylan. Cindy - if you read this,

please know that you and Dylan are in my thoughts and prayers and if there is

anything at all that I can do to help, just let me know. Both of you - and

- just take care and rest well -- remember to take deep breaths and slow

down when you can. (My new motto when I start to get " wild " is -- let it go,

and flow like a waterfall)

Love, Patti

Where's the support for Cindy C?

Hi All, I'm hurting like hell right now and I've had pain

medication, but where's all the support for Dylan and Cindy C.?

Dylan was so sick the other day in the study, Cindy was afraid he

was going to die! She has so much to follow up on him back at home

with new Dr.'s and all the new stuff NIH recommended! She's got her

hands full and needs all our support and prayers, and love, not just

referrals to the NIH study. A few of you all responded on Ceda in

support of her and Dylan,but not all. Cindy has been there for all

of us and she needs our love, prayers and support right now!

Thanks, Love to all!

S.

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

[Guest guest]

Thanks Patti, all this new info has been a bit over whelming. When I feel like

this I tend to sit on the PC to unwind. So I have been here all day. I think I'm

wearing this chair out. It just doesn't seem padded any more. HMMM.

Thanks , I know your new. I don't expect everyone to answer. I'm just

scared, and venting. I know everybody is going through their own stuff.

Many of you have contacted me at home. Thank you. I'm just kind of spinning

right now with all this new info. What to do next, where to go, what do I do

first, How do I find the right Docs that my insurance will cover? It will take

me a few days to digest all this and I will be ready to fight again. I've done

it before, I'll do it now. I won't let him down.

Thanks all for your thoughts and prayers. I am scared, but I will find the

answers. First thing has to be to deal with his heart. But I'll look for a neuo

Doc right away too. This nerve damage has to stop, before he moves wrong,and all

is lost. He and I both need a day or to to digest all this. I'll contact his

primary tomorrow to get this all started.

Thank you, my family of choice. I know you are all there for me.

Cindylouwho

[Guest guest]

Thanks Patti, all this new info has been a bit over whelming. When I feel like

this I tend to sit on the PC to unwind. So I have been here all day. I think I'm

wearing this chair out. It just doesn't seem padded any more. HMMM.

Thanks , I know your new. I don't expect everyone to answer. I'm just

scared, and venting. I know everybody is going through their own stuff.

Many of you have contacted me at home. Thank you. I'm just kind of spinning

right now with all this new info. What to do next, where to go, what do I do

first, How do I find the right Docs that my insurance will cover? It will take

me a few days to digest all this and I will be ready to fight again. I've done

it before, I'll do it now. I won't let him down.

Thanks all for your thoughts and prayers. I am scared, but I will find the

answers. First thing has to be to deal with his heart. But I'll look for a neuo

Doc right away too. This nerve damage has to stop, before he moves wrong,and all

is lost. He and I both need a day or to to digest all this. I'll contact his

primary tomorrow to get this all started.

Thank you, my family of choice. I know you are all there for me.

Cindylouwho

[Guest guest]

Whereabouts do you live Cindy. I have many friends across the US with

neurological issues and i may be able to give you a few names of some good

pediatric neurologists. Same thing with cardiologists, i don't have as many

contacts with heart issues, but I'm treading new ground with this too. I'm

22 and it was just discovered that i have sick sinus syndrome where I was

having constant bradycardias. My neuro kept on attributing it to my brain

issues, then my neurosurgeon requested the holter monitor and it was

discovered and i had a pacemaker put in within 2 weeks. The pacemaker is

working well it's just not healing well but that's EDS for ya. As far as

the no gag reflex I've had that for a long time. My case is probably

different and it is due to brainstem compression and cervical instability,

which the EDS complicated that more too. I've emailed the contact you gave

about the EDS study, my only question was if they would still accept me even

though i can no longer have mri's. I'm sure they'll get back to me soon.

I just wanted to tell you that I've been keeping you and dylan in my

prayers. I know you will keep fighting for him and you are an awesome mom

for that. I remember having to convince my parents just to go to New York

for me to see the specialists out there. That was a long hard battle

because they thought it wasn't necessary but you seem to understand the pain

your son is in and it's excellent that you're fighting for him and was able

to take him to maryland.

Re: Where's the support for Cindy C?

> Thanks Patti, all this new info has been a bit over whelming. When I feel

like this I tend to sit on the PC to unwind. So I have been here all day. I

think I'm wearing this chair out. It just doesn't seem padded any more.

HMMM.

>

> Thanks , I know your new. I don't expect everyone to answer. I'm just

scared, and venting. I know everybody is going through their own stuff.

>

> Many of you have contacted me at home. Thank you. I'm just kind of

spinning right now with all this new info. What to do next, where to go,

what do I do first, How do I find the right Docs that my insurance will

cover? It will take me a few days to digest all this and I will be ready to

fight again. I've done it before, I'll do it now. I won't let him down.

>

> Thanks all for your thoughts and prayers. I am scared, but I will find the

answers. First thing has to be to deal with his heart. But I'll look for a

neuo Doc right away too. This nerve damage has to stop, before he moves

wrong,and all is lost. He and I both need a day or to to digest all this.

I'll contact his primary tomorrow to get this all started.

>

> Thank you, my family of choice. I know you are all there for me.

> Cindylouwho

>

>

[Guest guest]

Whereabouts do you live Cindy. I have many friends across the US with

neurological issues and i may be able to give you a few names of some good

pediatric neurologists. Same thing with cardiologists, i don't have as many

contacts with heart issues, but I'm treading new ground with this too. I'm

22 and it was just discovered that i have sick sinus syndrome where I was

having constant bradycardias. My neuro kept on attributing it to my brain

issues, then my neurosurgeon requested the holter monitor and it was

discovered and i had a pacemaker put in within 2 weeks. The pacemaker is

working well it's just not healing well but that's EDS for ya. As far as

the no gag reflex I've had that for a long time. My case is probably

different and it is due to brainstem compression and cervical instability,

which the EDS complicated that more too. I've emailed the contact you gave

about the EDS study, my only question was if they would still accept me even

though i can no longer have mri's. I'm sure they'll get back to me soon.

I just wanted to tell you that I've been keeping you and dylan in my

prayers. I know you will keep fighting for him and you are an awesome mom

for that. I remember having to convince my parents just to go to New York

for me to see the specialists out there. That was a long hard battle

because they thought it wasn't necessary but you seem to understand the pain

your son is in and it's excellent that you're fighting for him and was able

to take him to maryland.

Re: Where's the support for Cindy C?

> Thanks Patti, all this new info has been a bit over whelming. When I feel

like this I tend to sit on the PC to unwind. So I have been here all day. I

think I'm wearing this chair out. It just doesn't seem padded any more.

HMMM.

>

> Thanks , I know your new. I don't expect everyone to answer. I'm just

scared, and venting. I know everybody is going through their own stuff.

>

> Many of you have contacted me at home. Thank you. I'm just kind of

spinning right now with all this new info. What to do next, where to go,

what do I do first, How do I find the right Docs that my insurance will

cover? It will take me a few days to digest all this and I will be ready to

fight again. I've done it before, I'll do it now. I won't let him down.

>

> Thanks all for your thoughts and prayers. I am scared, but I will find the

answers. First thing has to be to deal with his heart. But I'll look for a

neuo Doc right away too. This nerve damage has to stop, before he moves

wrong,and all is lost. He and I both need a day or to to digest all this.

I'll contact his primary tomorrow to get this all started.

>

> Thank you, my family of choice. I know you are all there for me.

> Cindylouwho

>

>

[Guest guest]

Well, thank you , I'm in Michigan just a bit south of Detroit. Any Drs

names are appreciated. My insurance and I are about to battle again.

Lots of people can't have MRI's, I don't think that will have any baring on

getting into the study. It is just one of many tests.

I'm sorry your parents don't get it. I just don't understand that as a mom, but

I know your not alone. There are many young people here that don't get the

understanding of their parents. Well, not just the young, I hear it all the

time. So sorry hun. just keep fighting for your self. We're here for you.

Cindylowho

Re: Where's the support for Cindy C?

> Thanks Patti, all this new info has been a bit over whelming. When I feel

like this I tend to sit on the PC to unwind. So I have been here all day. I

think I'm wearing this chair out. It just doesn't seem padded any more.

HMMM.

>

> Thanks , I know your new. I don't expect everyone to answer. I'm just

scared, and venting. I know everybody is going through their own stuff.

>

> Many of you have contacted me at home. Thank you. I'm just kind of

spinning right now with all this new info. What to do next, where to go,

what do I do first, How do I find the right Docs that my insurance will

cover? It will take me a few days to digest all this and I will be ready to

fight again. I've done it before, I'll do it now. I won't let him down.

>

> Thanks all for your thoughts and prayers. I am scared, but I will find the

answers. First thing has to be to deal with his heart. But I'll look for a

neuo Doc right away too. This nerve damage has to stop, before he moves

wrong,and all is lost. He and I both need a day or to to digest all this.

I'll contact his primary tomorrow to get this all started.

>

> Thank you, my family of choice. I know you are all there for me.

> Cindylouwho

>

>

[Guest guest]

Hi

I was so sorry to hear about DYlan, they definitely have my thoughts &

prayers. Sending lots of healing thoughts their way.

Betty

Where's the support for Cindy C?

>

> Hi All, I'm hurting like hell right now and I've had pain

> medication, but where's all the support for Dylan and Cindy C.?

> Dylan was so sick the other day in the study, Cindy was afraid he

> was going to die! She has so much to follow up on him back at home

> with new Dr.'s and all the new stuff NIH recommended! She's got her

> hands full and needs all our support and prayers, and love, not just

> referrals to the NIH study. A few of you all responded on Ceda in

> support of her and Dylan,but not all. Cindy has been there for all

> of us and she needs our love, prayers and support right now!

> Thanks, Love to all!

> S.

>

>

>

>

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

>