Guest guest Posted August 19, 2004 Report Share Posted August 19, 2004 Hi . I was shocked to find all these new things out about Dylan. but at least we know now. Looks like he needs a cardiologist and neurologist to start. I'm still a bit overwhelmed at learning all this new stuff. But first things first. The heart monitor was taken off on Wednesday. That is the longest wait time for the results. All the other tests, we already have the results for. We will have a complete written report in about a month. But the Dr will email me today with all the findings in so far, so I can hand it to the primary to get things started. I really am tired. Thanks Cindylouwho 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 In a message dated 8/19/2004 1:56:40 PM Eastern Daylight Time, c-clark05@... writes: All the other tests, we already have the results for. We will have a complete written report in about a month. But the Dr will email me today with all the findings in so far, Hi Cindy, I really enjoyed talking with you today! I hope we didn't use up your month's supply of minutes on your cell! Don't forget that there is a TON of blood tests that they did or are doing. MOst of those will be for research purposes only but will be interesting to see what they come up with. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 In a message dated 8/19/2004 1:56:40 PM Eastern Daylight Time, c-clark05@... writes: All the other tests, we already have the results for. We will have a complete written report in about a month. But the Dr will email me today with all the findings in so far, Hi Cindy, I really enjoyed talking with you today! I hope we didn't use up your month's supply of minutes on your cell! Don't forget that there is a TON of blood tests that they did or are doing. MOst of those will be for research purposes only but will be interesting to see what they come up with. Quote Link to comment Share on other sites More sharing options...
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