Eds Questions

[Kyler]

I read that people with significant pooling can have it because of EDS affecting their viens. My son doesn't appear to have any other symptoms but he pools REALLY bad despite 10 mgs of midodrine every 2 hours. I was wondering if you could have EDS with no real obvious signs. He has never dislocated anything either. I am asking based only on the severity of his pooling.

Thank you, Serena

[Carolyn Morris]

Hi Serena-

I was dx with POTS in 2006 and later with EDS Hypermobile type in 2009. I guess I've had it all my life and never knew (I'm 48 now). I have always been double-jointed but never dislocated anything. I did hurt my back and hip in 2010 which the doctors feel may be EDS related, but I'm a lot older than your son.

My POTS treatment didn't change after it was found out that I had EDS. Kept same protocol in place. Keeping my leg muscles strong REALLY helps. I am glad that I know I have EDS though because I saw a physical therapist who suggested exercises that protect my joints.

[sugartwin]

I'd say that most cases of EDS are not obvious. The severe ones certainly are, but I'd bet my check that most people with it are wandering around thinking they're normal. Up until a couple years ago, I was one of them. In retrospect, it's clear that I have it, my mother has it, and her mother had it.

Doctors aren't well trained to recognize it, so you can't rely on them to be the "safety net." If you want a diagnosis, you have to go directly to a specialist: a geneticist trained in connective tissue disorders.

[Kyler]

Wow! It's so crazy that you can have something like that and not know. Do you both pool really bad? Is it a blood test that shows EDS?

[Chaos]

There are blood tests for each type of EDS except type 3 which is what a lot of us have. (Or at least that's what the geneticist I saw told me.)

I think the theory has been that the connective tissue disorder allows for increased pooling, although recently I've seen some studies that have shown that not to be true so I don't think anyone knows at this point what the connection is between EDS and Dysautonomia. They just know there is a higher than normal occurrence between the two disorders.

Don't suppose your son is into wearing support hose, huh? I know a lot of people on here get a lot of help from them.

Good luck!

[sugartwin]

Wow! It's so crazy that you can have something like that and not know. Do you both pool really bad? Is it a blood test that shows EDS?

I learned from my blood volume test that I pool pretty badly. As soon as I start to sit up, my blood starts heading toward my feet. I also have some nerve damage though, so it's not clear to me whether EDS or the nerve damage is more responsible for my severe pooling. Like Chaos said, no one knows for sure exactly why EDS and dysautonomia go together.

There are six types of EDS. Of the three most common (Hypermobility, Classical and Vascular) only Vascular has a blood test that is a close to 100% certain. For Classical, only 50% of people will have a mutation. For Hypermobility only 10%, so few that they usual don't test for it at all, unless it's for research purposes.

[Kyler]

That is really helpful. Thank you all.

Chaos, We have tried support hose but they made him too hot which makes him feel worse. He also HATES them because he is 14:(

The other problem is that he is very tall 6'2 1/2 so he needs an XL for the height and then they are too loose around his calf. They said that they can special order them for $80 but it is unlikely that they will get used. I don't want to damage his psyche by making him wear them in middle school. He is very positive despite feeling very bad most of the time so I am picking my battles.

[Chaos]

Yeah, I have 3 sons and I can't imagine that any of them would have been willing to wear support hose at 14- no matter how bad they felt. I don't even want to wear them at MY age and being female!

When I saw a neuro at Mayo recently he suggested that if I didn't want to wear the full length hose (which are optimal) that I go to a running store and get compression socks that runners wear. They only go knee high so certainly aren't totally effective, but maybe your son might be ok with them when they're under jeans? Just an idea.

Glad your son is keeping a good attitude despite feeling lousy. I think this is probably as hard on you as it is on him. I know I'd rather be sick than have my kids be ill. Hugs to you both!

[HopeSprings]

Sugartwin said there is a blood test for the vascular type (which is the one you are suspecting) --maybe your son can be tested?

Can someone tell me what tests are available to evaluate "pooling." Is this pooling into the legs or the stomach? I'd like to have this looked at myself. I know I don't have classic EDS -- I can barely touch my toes, not flexible at all, but I have wondered about the vascular type.

[nunntrio]

quote name='Worried Mom' timestamp='1300850547' post='154210']

That is really helpful. Thank you all.

Chaos, We have tried support hose but they made him too hot which makes him feel worse. He also HATES them because he is 14:(

The other problem is that he is very tall 6'2 1/2 so he needs an XL for the height and then they are too loose around his calf. They said that they can special order them for $80 but it is unlikely that they will get used. I don't want to damage his psyche by making him wear them in middle school. He is very positive despite feeling very bad most of the time so I am picking my battles.

[/quot

There are types of sporting cloths that provide compression and may be helpful. My husband bikes and he bought me a pair of compression bike pants that are helpful. They maybe a lot more suitable for a teen boy. I think Under Armor also make some compression wear.

[zaks27]

You know, I've wondered if I have EDS too. I was never offered a blood test. I think next time I'm at my Rheumatologist I'll ask about it. I have connective tissue disease along with tons of autoimmune disease. My mother had some "double joints", and we both have the "velvet skin' the literature describes. I can also pinch quite a bit of skin near the elbow. Pretty stretchy! I also bruise easily, although that could be the predsnisone I take daily. I do wear 40 mm compression hose (and usually wear regular socks over them), and take midodrine every 3 hours. I know when I had my TTT, my arms and legs and feet felt super heavy and they were completely numb. None of the docs in my area do more than the TTT. They wouldn't know the difference between adrenogenic or any other subspecialty or type of POTS. I'm just glad I got the diagnosis--but I'd really like to know if I have EDS too. I have a grand-daughter and I'm sure my son would like to know if this runs in the family.

[Kyler]

I'm going to take him to try on that sports wear that you guys talked about - that's a good idea. He desperately wants to be an athlete...I cried about that one many times. That may make him feel "cool" to wear athletic clothing.

I am also going to talk to his doc on Mon. about the EDS testing. He is a great doc but he doesn't believe in extensive testing on kids with no blatant signs of underlying illness but when I see Kyler's legs when he gets out of the shower he looks like a dead person that has dependant levidity - if you've never seen it look up pics on the net - it's so bad -it's like the deepest purple with bright red blotches. I can't fathom how he stays upright - accoring to the doctor testosterone has at least 1 good purpose in this world(LOL). Although this ***** I am actually thankful that Kyler is not a girl because the doc said that he would pass out every time he tried to stand. I feel for the ladies that have this. His legs even turn purple when he sits now and his arms if they are below his heart. Crazy.

Naomi, Kyler's doctor judges the pooling by the TTT results and at every visit he makes Kyler lay down for 10 mins. and then stand and he just looks at the color change - you can really see it if you push on the skin to make it blanch like checking a sunburn. There are other tests but the color change is the most visible.

Thank you all for the great ideas. Serena