Where's the support for Cindy C?

[Guest guest]

Indeed sending prayers & healing thoughts to them, though I didn't know

flooding everyone's in boxes replying to the list was required. I'm sure those

she

knows & vice versa are replying directly to her...but as a newbie, praying

for her & Dylan felt most appropriate to me. Will keep reading to see what they

discover, and hope the news will be good.

Liza

[Guest guest]

:

How does the no gag reflex affect you and what issues do you have to be

careful about. Does it mean you throw up very easily....or the

opposite?

Since NiH has told Cindy it is frequent with Heds, What would a parent

notice?

Bernie

Re: Where's the support for Cindy C?

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]

:

How does the no gag reflex affect you and what issues do you have to be

careful about. Does it mean you throw up very easily....or the

opposite?

Since NiH has told Cindy it is frequent with Heds, What would a parent

notice?

Bernie

Re: Where's the support for Cindy C?

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]

:

How does the no gag reflex affect you and what issues do you have to be

careful about. Does it mean you throw up very easily....or the

opposite?

Since NiH has told Cindy it is frequent with Heds, What would a parent

notice?

Bernie

Re: Where's the support for Cindy C?

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]

Hi bernie,

It causes me to choke on my food all the time. There's not a lot i can eat.

Normally when you start to choke on something your gag reflex kicks in and

helps you to cough it back up. My swallowing issues improved after my

fusion but then got much much worse. I've been vomiting for the last 6

weeks. Either due to high icp or the cervical instability. We can't get

anything to control it. I personally choke on my saliva all the time too

because i don't have the natural response to swallow. I'm not sure if

that's something to look for with no gag reflex or not. It's just my

experience.

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 bernie,

It causes me to choke on my food all the time. There's not a lot i can eat.

Normally when you start to choke on something your gag reflex kicks in and

helps you to cough it back up. My swallowing issues improved after my

fusion but then got much much worse. I've been vomiting for the last 6

weeks. Either due to high icp or the cervical instability. We can't get

anything to control it. I personally choke on my saliva all the time too

because i don't have the natural response to swallow. I'm not sure if

that's something to look for with no gag reflex or not. It's just my

experience.

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]

Since when did prayer become a public issue? I choose to do mine privately,

and I'd appreciate not being told privacy is neglectful.

In a message dated 8/19/04 5:52:11 PM, ceda writes:

> Where's the support for Cindy C?

>