NIH findings so far

[Guest guest]

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