Re: NIH findings so far

[Guest guest]

Cindy-

Oh my. I'm sitting here reading your messages just crying my eyes out. I'm so

sorry for both you and Dylan. Nothing in this world is worse than seeing your

child in so much distress, and not being able to do anything but hope the

doctors will take care of it. I'm so sorry. I don't know what else to say.

On the other hand, It's sounds amazing that you are FINALLY getting the answers.

I can't believe that about his fractured vertebrae!

Oh, I hope these doctors can get Dylan the help he needs.

Is he on one of those heart monitors now? The one you wear home for 24 hours?

I wish I could help somehow. You must be exhausted.

All I can do is send Big Hugs your way, and you know I'm thinking of you and

Dylan all the time.

NIH findings so far

Well, first I have to say watching Two Docs that truly know EDS examine your

child is an amazing thing. In a hour and a half exam, I saw things happen with

his body I've never seen before, but they knew what to look for. Every one of

these findings are new:

1. He has no gag reflex, (They are finding that very common. And a possible DX

tool)

2. He has a bulged disk between T 12 and L1. More tests coming.

3. Further studies needed in his hips, looks like low bone density and both

hips are not the same appearance.

4. This one FREAKED me out when I saw it, they asked him to lower his head,

and at C7, his head when into a complete 45 degree angle. !!!!! Like the spine

was straight and then the head was parallel with the floor, no bend, no nothing.

Like an upside down L. They said they had only seen that once before.

5. His shoulders are barely staying in place. How did we not know that? They

said they are out more than they are in. Like they just barely stay in position,

and they just fall down from just hanging his arms, but it doesn't hurt. But

when he does it on purpose, it's extreme.

6. They feel there is left arm nerve impingement, the reflexes are dull. More

tests coming.

7. They think there may be permanent nerve damage in the entire right leg and

hip.

More tests coming.

8. He has a high arch in the foot that completely collapses when standing.

9. He has those Bumps in his heals. Those pul... something things.

10. They were fascinated with his stretch marks. Never seen them that bad.

They took lots of pictures of those.

11. He had the high palate, I didn't know that. And he has something else they

have been seeing in type 3 with the roof of the mouth, sometimes, is this,

Streak down the center, that is a bit lower, than the regular roof, I can't

remember what they called it.

12. He has scoliosis.

13. His elbow hyperextensions where at 16 degrees and 20 degrees, again on the

very extreme range.

14. The one scare he has they said looked like the cigarette paper scaring.

15. The Bradycardia.

16. The 1 degree AV Block.

17. He has light blue sclera.

There is a bit more, and they are big stuff, but the whole picture isn't in

yet.

Remember, big and small we didn't know anything about these things before

today. I am amazed at what can happen in two days when you see the right Doctor.

And all the tests aren't in yet. EDS research? Well yes we were technically in a

research protocol, but, Look how much we learned already and tests are still

not finished getting evaluated yet.

Cindylouwho

[Guest guest]

Cindy-

Oh my. I'm sitting here reading your messages just crying my eyes out. I'm so

sorry for both you and Dylan. Nothing in this world is worse than seeing your

child in so much distress, and not being able to do anything but hope the

doctors will take care of it. I'm so sorry. I don't know what else to say.

On the other hand, It's sounds amazing that you are FINALLY getting the answers.

I can't believe that about his fractured vertebrae!

Oh, I hope these doctors can get Dylan the help he needs.

Is he on one of those heart monitors now? The one you wear home for 24 hours?

I wish I could help somehow. You must be exhausted.

All I can do is send Big Hugs your way, and you know I'm thinking of you and

Dylan all the time.

NIH findings so far

Well, first I have to say watching Two Docs that truly know EDS examine your

child is an amazing thing. In a hour and a half exam, I saw things happen with

his body I've never seen before, but they knew what to look for. Every one of

these findings are new:

1. He has no gag reflex, (They are finding that very common. And a possible DX

tool)

2. He has a bulged disk between T 12 and L1. More tests coming.

3. Further studies needed in his hips, looks like low bone density and both

hips are not the same appearance.

4. This one FREAKED me out when I saw it, they asked him to lower his head,

and at C7, his head when into a complete 45 degree angle. !!!!! Like the spine

was straight and then the head was parallel with the floor, no bend, no nothing.

Like an upside down L. They said they had only seen that once before.

5. His shoulders are barely staying in place. How did we not know that? They

said they are out more than they are in. Like they just barely stay in position,

and they just fall down from just hanging his arms, but it doesn't hurt. But

when he does it on purpose, it's extreme.

6. They feel there is left arm nerve impingement, the reflexes are dull. More

tests coming.

7. They think there may be permanent nerve damage in the entire right leg and

hip.

More tests coming.

8. He has a high arch in the foot that completely collapses when standing.

9. He has those Bumps in his heals. Those pul... something things.

10. They were fascinated with his stretch marks. Never seen them that bad.

They took lots of pictures of those.

11. He had the high palate, I didn't know that. And he has something else they

have been seeing in type 3 with the roof of the mouth, sometimes, is this,

Streak down the center, that is a bit lower, than the regular roof, I can't

remember what they called it.

12. He has scoliosis.

13. His elbow hyperextensions where at 16 degrees and 20 degrees, again on the

very extreme range.

14. The one scare he has they said looked like the cigarette paper scaring.

15. The Bradycardia.

16. The 1 degree AV Block.

17. He has light blue sclera.

There is a bit more, and they are big stuff, but the whole picture isn't in

yet.

Remember, big and small we didn't know anything about these things before

today. I am amazed at what can happen in two days when you see the right Doctor.

And all the tests aren't in yet. EDS research? Well yes we were technically in a

research protocol, but, Look how much we learned already and tests are still

not finished getting evaluated yet.

Cindylouwho

[Guest guest]

Cindy:

I know exactly what you mean re the expert exam.....my eyes almost

bugged out of my head when Dr. Grubb dislocated both Meaghan's shoulders

(while standing) and when supine, he dislocated both Meaghan's hips, so

that her knees were almost touching the side of her ribs....ALL WITHOUT

EVEN A WINC OF DISCMFORT. A real shock when you believe you know your

child's issues and their hypermobility....NOT! You KNOW all the other

docs don't have a clue......scary! ! Takes getting used to, but knowing

was also so much better...even if implementing treatment takes time.

So very glad you got some answers.

Regards, Bernie

NIH findings so far

Well, first I have to say watching Two Docs that truly know EDS examine

your child is an amazing thing. In a hour and a half exam, I saw things

happen with his body I've never seen before, but they knew what to look

for. Every one of these findings are new: 1. He has no gag reflex, (They

are finding that very common. And a possible DX tool) 2. He has a bulged

disk between T 12 and L1. More tests coming. 3. Further studies needed

in his hips, looks like low bone density and both hips are not the same

appearance.

4. This one FREAKED me out when I saw it, they asked him to lower his

head, and at C7, his head when into a complete 45 degree angle. !!!!!

Like the spine was straight and then the head was parallel with the

floor, no bend, no nothing. Like an upside down L. They said they had

only seen that once before.

5. His shoulders are barely staying in place. How did we not know that?

They said they are out more than they are in. Like they just barely stay

in position, and they just fall down from just hanging his arms, but it

doesn't hurt. But when he does it on purpose, it's extreme.

6. They feel there is left arm nerve impingement, the reflexes are dull.

More tests coming.

7. They think there may be permanent nerve damage in the entire right

leg and hip.

More tests coming.

8. He has a high arch in the foot that completely collapses when

standing.

9. He has those Bumps in his heals. Those pul... something things.

10. They were fascinated with his stretch marks. Never seen them that

bad. They took lots of pictures of those.

11. He had the high palate, I didn't know that. And he has something

else they have been seeing in type 3 with the roof of the mouth,

sometimes, is this, Streak down the center, that is a bit lower, than

the regular roof, I can't remember what they called it. 12. He has

scoliosis.

13. His elbow hyperextensions where at 16 degrees and 20 degrees, again

on the very extreme range.

14. The one scare he has they said looked like the cigarette paper

scaring.

15. The Bradycardia.

16. The 1 degree AV Block.

17. He has light blue sclera.

There is a bit more, and they are big stuff, but the whole picture isn't

in yet.

Remember, big and small we didn't know anything about these things

before today. I am amazed at what can happen in two days when you see

the right Doctor. And all the tests aren't in yet. EDS research? Well

yes we were technically in a research protocol, but, Look how much we

learned already and tests are still not finished getting evaluated yet.

Cindylouwho

[Guest guest]

Hi Cindy,

I'm sooo glad that you all were able to get there and find out some things.

It is so unbelievable when someone who knows what they are doing examine you.

Even though Nazli took the lead mostly when the two fellows were with me, I was

so very impressed with how Sherman knew EVERYTHING about me from my foot tall

file. He even remembered that I don't have a gag reflex (found by Dr. Heffez

in Chicago ) and couldn't believe it when he could swish a stick back there

forever without my ever feeling anything I thnk that comes about from damage to

nerves in the cervical spine. Was that ok with Dylan? I know you mentioned the

thorasic and lumbar.

Dr. McD told me the the same thing about looking at every single thing as

possible indicators and even causes. She had me looking at it in a whole new

way.

So many of the things you mentioned, I have been found to have or some

variation of. It is so amazing to see similarities. When they start to see so

many

of us with the same things, then they realize the broader scope and then add

those often to the study, testing or description. For example, from the first

study, they now say that many if not most EDSers have POTS and GI issues and

many many many other things!!

I guess I take forgranted how blessed I have been to be a part of so much

research at NIH. I will never forget that first time there and how I felt that

finally someone really cared and also wanted to hear everything and I mean

everything! It really did make me cry!

I am so sorry that Dylan is having to deal with so much so young. It just

seems so unfair and as a mom, I know you would take it all away if you could. It

is the way I feel about Sara too. Certain things you do get " used to " feeling

like when you said his shoulders hanging down and out but not always causing

pain. Other times, you just get used to putting up with it all. Once, Sara's

elbow was DISLOCATED for 10 days causing her a lot of pain but we didn't know

what was wrong so she went on about her day, unable to write at school until

one night, she rolled over on to it and popped it back in.

I know you must feel tremendous anger towards all the doctors who never

picked up on things , putting Dylan and you too through such pain and suffering

and

maybe permanent damage. I know that doctors think that a young kid isn't

likely to have certain things so they don't even bother to test for it. It is so

maddening!!

I will stop here. I'm sorry to have rattled on so when what I just wanted to

say was hug him for me and I'm so glad that you got some answers!!

In a message dated 8/19/2004 2:43:17 AM Eastern Daylight Time,

c-clark05@... writes:

Well, first I have to say watching Two Docs that truly know EDS examine your

child is an amazing thing. In a hour and a half exam, I saw things happen with

his body I've never seen before, but they knew what to look for. Every one of

these findings are new:

1. He has no gag reflex, (They are finding that very common. And a possible

DX tool)

2. He has a bulged disk between T 12 and L1. More tests coming.

3. Further studies needed in his hips, looks like low bone density and both

hips are not the same appearance.

4. This one FREAKED me out when I saw it, they asked him to lower his head,

and at C7, his head when into a complete 45 degree angle. !!!!! Like the spine

was straight and then the head was parallel with the floor, no bend, no

nothing. Like an upside down L. They said they had only seen that once before.

5. His shoulders are barely staying in place. How did we not know that? They

said they are out more than they are in. Like they just barely stay in

position, and they just fall down from just hanging his arms, but it doesn't

hurt.

But when he does it on purpose, it's extreme.

6. They feel there is left arm nerve impingement, the reflexes are dull. More

tests coming.

7. They think there may be permanent nerve damage in the entire right leg and

hip.

More tests coming.

8. He has a high arch in the foot that completely collapses when standing.

9. He has those Bumps in his heals. Those pul... something things.

10. They were fascinated with his stretch marks. Never seen them that bad.

They took lots of pictures of those.

11. He had the high palate, I didn't know that. And he has something else

they have been seeing in type 3 with the roof of the mouth, sometimes, is this,

Streak down the center, that is a bit lower, than the regular roof, I can't

remember what they called it.

12. He has scoliosis.

13. His elbow hyperextensions where at 16 degrees and 20 degrees, again on

the very extreme range.

14. The one scare he has they said looked like the cigarette paper scaring.

15. The Bradycardia.

16. The 1 degree AV Block.

17. He has light blue sclera.

There is a bit more, and they are big stuff, but the whole picture isn't in

yet.

Remember, big and small we didn't know anything about these things before

today. I am amazed at what can happen in two days when you see the right Doctor.

And all the tests aren't in yet. EDS research? Well yes we were technically in

a research protocol, but, Look how much we learned already and tests are

still not finished getting evaluated yet.

Cindylouwho

[Guest guest]

Hi , I'm not sure if your asking if he has no gag reflex or Cervical spine

damage. But they found he does not have a gag reflex. His C spine is in danger

of damage but they saw none yet. One wrong move and he is in trouble. I'll try

to call you tomorrow, OK?

Re: NIH findings so far

..... He even remembered that I don't have a gag reflex (found by Dr. Heffez

in Chicago ) and couldn't believe it when he could swish a stick back there

forever without my ever feeling anything I thnk that comes about from damage

to

nerves in the cervical spine. Was that ok with Dylan? I know you mentioned the

thorasic and lumbar.

Dr. McD told me the the same thing about looking at every single thing as

possible indicators and even causes. She had me looking at it in a whole new

way.

So many of the things you mentioned, I have been found to have or some

variation of. It is so amazing to see similarities. When they start to see so

many

of us with the same things, then they realize the broader scope and then add

those often to the study, testing or description. For example, from the first

study, they now say that many if not most EDSers have POTS and GI issues and

many many many other things!!

I guess I take forgranted how blessed I have been to be a part of so much

research at NIH. I will never forget that first time there and how I felt that

finally someone really cared and also wanted to hear everything and I mean

everything! It really did make me cry!

I am so sorry that Dylan is having to deal with so much so young. It just

seems so unfair and as a mom, I know you would take it all away if you could.

It

is the way I feel about Sara too. Certain things you do get " used to " feeling

like when you said his shoulders hanging down and out but not always causing

pain. Other times, you just get used to putting up with it all. Once, Sara's

elbow was DISLOCATED for 10 days causing her a lot of pain but we didn't know

what was wrong so she went on about her day, unable to write at school until

one night, she rolled over on to it and popped it back in.

I know you must feel tremendous anger towards all the doctors who never

picked up on things , putting Dylan and you too through such pain and

suffering and

maybe permanent damage. I know that doctors think that a young kid isn't

likely to have certain things so they don't even bother to test for it. It is

so

maddening!!

I will stop here. I'm sorry to have rattled on so when what I just wanted to

say was hug him for me and I'm so glad that you got some answers!!

[Guest guest]

Cindy -

I'm so glad you are finally getting some answers for Dylan!!!

I pray that with this new knowledge you will find ways to not only

deal with all the problems, but actually eliminate some of them!!

I know you are a fighter for your kid - keep up the great work!

[Guest guest]

Cindy -

I'm so glad you are finally getting some answers for Dylan!!!

I pray that with this new knowledge you will find ways to not only

deal with all the problems, but actually eliminate some of them!!

I know you are a fighter for your kid - keep up the great work!

[Guest guest]

Thank you so much , I guess I am a fighter when it comes to him. It's

the only thing I can do. Knowledge is power and as much as I hated to hear these

new findings, many of them can be dealt with, and that's a good thing.

Cindylouwho

Re: NIH findings so far

Cindy -

I'm so glad you are finally getting some answers for Dylan!!!

I pray that with this new knowledge you will find ways to not only

deal with all the problems, but actually eliminate some of them!!

I know you are a fighter for your kid - keep up the great work!

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