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Old 04-02-2014, 08:37 AM   #16
Cierese
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So, I haven't posted in a while, but its been a BUSY past few months!! Anyhow, it's now official... Myself and ALL 3 of my sweet kids are EDSers. I will chat more later when I get a moment. Today is PT/OT day for my youngest... Hope you all are enjoying your spring.
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Old 04-02-2014, 06:43 PM   #17
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"It's a Small World" popped into my head when I saw this title. Another EDS family, here. Lots of dislocations for one child, and ongoing struggles. We have a great medical team in the Chicago area (Blessing).
We also deal with food allergies, Celiac, and a handful of other fun EDS related issues, but we're learning.
Found a FANTASTIC Physical Therapist and I wish we could see him for so much less than it costs through the hospital, but we have 27 sessions per calendar year, so that is good. He's been such a blessing. We have braces and splints that we use when needed.

Now, back to Disney, as kiddo grows and her connective tissue disorder has increased in severity, it DEFINITELY changes our touring style in the parks. Last trip we had a wheel chair for her because she just can't walk that far. It was a different pace and a different experience, but it was still Disney, so it was still fantastic.

My brother, sisters, and I all have Hypermobility type (plus POTS), but we didn't know what it was. We were just told we were "hypermobile" and that is why we had joint pain? I don't have the severity that my daughter has. She seems to have an extreme version, but our hope is that with early awareness and ongoing support and exercises, she can do whatever she puts her mind to in life.

Phew, long intro! LOL
Anyway, happy to find this thread. Hy Trudy!
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Old 04-16-2014, 10:10 AM   #18
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DD13 was doing so well for quite a while now. I'm not sure what happened but for the past week she's been having progressively worse pain in the same ankle that was hurting before. This morning it was up to 7/10 on the pain scale which is where she was at when she first started PT and down the road to the EDS diagnosis. We've been icing it in the evening and using her Valoren gel and giving her extra strength Tylenol to make it bearable (she says that brings it to 3/10) but I'm wondering if there's anything else I could be doing. There's no sign of swelling which is unusual for her when she's in this kind of pain. The pain is spreading to her knee which worries me because in the past when she had ankle pain the way should walk due to the pain ended up causing the tibia to shift and push the patella out of place as well. Because she's compensating her other knee is also starting to hurt a bit. I'd love suggestions if anybody has any.
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Old 04-16-2014, 02:05 PM   #19
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Has she tried a brace, even just a neoprene sleeve one? It's not something she should wear all the time, but I find that compression can help. I rarely swell, but that doesn't mean that there isn't something going on. Is she seeing the PT at all anymore? Since it sounds like it started somewhat suddenly, it might be worth putting a call into her doctor, too. Since it only just started getting worse, any intervention they can suggest to start now would be very useful.

EDS symptoms can vary with hormone changes, too. That's one reason some women don't present with symptoms until puberty. Weather changes can also mess with pain levels. It's that time of year and if your weather has bounced around this week the way it has in southern NE, then that could be the culprit. Of course if it's weather or hormones, you can't do much more than you already are, but at least it should get better as things stabilize. I would say dropping from a 7/10 to a 3/10 with what you're doing is pretty good consider that it's really not a huge amount of intervention.
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Old 04-16-2014, 02:38 PM   #20
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She graduated from PT late January. I think I'd need a new referral to go back but I can definitely get one. I don't need referrals for specialists but the PT said something about authorization based on doctor referral but that might have to do with the fact that she hadn't been diagnosed yet when she first started (PT was originally for an injury that just wasn't healing right).

She has ankle braces that she used to wear before she got her SMOs. She uses the SMOs whenever she's outside the house and doesn't use anything when inside. I can definitely have her start wearing the braces when indoors. This is the kind she has, one for each foot. There's no point to wearing them at the same time as her orthotics, is there?


Hormones could definitely be a factor. I hadn't considered that or weather. I remember reading that hormones can be a factor but I forgot. Since her problems did seem to really escalate to the point of noticable enough to seek medical care during puberty, it makes a lot of sense that it could be part of the problem. She is PMSing right now. Hopefully if hormones and weather are the cause of the sudden increase in pain this will go away soon. We were in the upper 80s on Sunday and I had to scrape ice off my car windows this morning then I went out for lunch today without a jacket. Yeah, the weather is bouncing around. I knew that could be an issue if you have problems like chiari but I didn't realize it could affect EDS.

I sure hope this eases up soon. She's going on a class trip out of state in 1.5 weeks. I'm definitely getting her a wheelchair since they'll be walking almost morning to night with only breaking for meals and bus rides so there's no way she could handle that kind of walking but I'd rather she start off pain free.

I'll see how she's doing when I get home from work. She's spent the day wandering the school with the gel and Tylenol having worn off probably well before lunch so if the pain is back up to a 7 then I'll book an appointment for her to be checked, just to see what the doctor can suggest. Unfortunately she doesn't have a doctor in the area who actually knows EDS. Our primary doctor said she's never had a patient with EDS but she's been reading up and is really good about actively referring to specialists and PT. While that does mean some support, it doesn't mean much knowledge to help out at a moment's notice. In general I think she's kind of approaching the management of the pain like she would osteoarthritis and treating injuries and referring out if something is beyond her knowledge.

For us, this really is the maximum we do for medication so it feels like a lot of intervention. I think her EDS is still on the relatively mild side compared to so many people I've read about so when she's at her worst I tend to forget that it's really not that bad. She just rarely asks for pain medication or pain gel so when she does, I really take notice. She usually prefers to tough it out without anything even when it's a 5 or 6 but once it gets to a 7 she asks for it. According to her PT she has a high pain tolerance. I had always thought she had a low pain tolerance until the PT explained her pain levels to me but it turned out she just had pain so often that she learned to deal with it.

Thanks for your thoughts and suggestions!
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Old 04-16-2014, 03:01 PM   #21
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Hi! Another EDS family here. We got our diagnoses in a backward manner. My daughter and I were both seeing an incredible PT and she was the one who put the pieces together and thought that we had EDS. She recommended a rheumy for my DD(because she was worse off at the time) who farmed DD out to many specialists in an attempt to make sure we got an accurate diagnosis. With all our reports in hand, DD was diagnosed with EDS3 at Children's in DC and, because of our family history, the geneticist suggested that my mother, myself and now deceased grandmother all had it as well. All my doctors(and it seems there are a ton of them) and all my mother's doctors(a boatload for her as well) all operate under the assumption that we have EDS3, based on our symptoms and my daughter's diagnosis. For insurance purposes, my mother and I have not and probably will not get a formal diagnosis unless it becomes absolutely necessary. None of my boys appear to have EDS. In our family, it has only been the females that have been symptomatic with our symptoms becoming much more evident at puberty. The miscarriage rate in the family has been quite high. My grandmother had at least 10 miscarriages and two preemies. After many miscarriages, my mother was only able to have me. I was able to have 4 children, but they were all early as a result of PROM. The amniotic sac is apparently made of collagen fibers so ours is pretty common story. DD is probably the most symptomatic of the 4 generations and has decided that she will adopt children someday as she doesn't want to pass on this condition and she's not even sure she would be able to carry to term. Now, enough of the bummer diagnosis information! Moving on to some fun stuff!

My mother, daughter and I will be going to Disney World this coming January so it should be an EDS Princess Adventure! We're all three huge Disney fans so it should be a fantastic girls only trip! Because all three of us have EDS, it will be a different type of trip than others we've had with the boys. We are looking forward to lots of Princess meet and greets, Princess character meals and wearing princess tiaras! We're also planning on doing the Wishes Dessert Party to avoid the masses and Sparkling Illuminations Party as well to avoid getting run over as well. The tallest of us is just over 5 feet tall and I'm not even 5 feet tall so we always run the risk of getting run over so we've decided these dessert type parties might be a good thing for us! LOL!
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Old 04-16-2014, 03:43 PM   #22
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For insurance purposes, my mother and I have not and probably will not get a formal diagnosis unless it becomes absolutely necessary.
If your concern is because of insurance premiums, health insurance companies can no longer deny or raise premiums for pre-existing conditions. It's still not necessarily worth getting diagnosed if you don't need to, but I wanted to make sure you knew it certainly won't make a difference for health insurance.

As far as numbers of men compared women with EDS, I think men are under-diagnosed (I think EDS in general is under-diagnosed, but especially in men). There are hormones found only in women that cause things like joint laxity for ease with natural childbirth. There are also plenty of societal pressures that discourage men to seek help when they are having problems. Finally, men (or anyone) who have family members with EDS and do have EDS symptoms are probably only going to get diagnosed if those symptoms start causing problems. My brother is that way. He clearly has EDS (for straight hypermobility he has more than I do, but without the pain or dislocations), but until it actually impacts his life he's not going to bother to get diagnosed.
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Old 04-22-2014, 12:11 PM   #23
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Hi to everyone

Our geneticist said that some men tend to not be as symptomatic because they have more muscle to keep the joints in place. My oldest is quite bendy but has very few problems except in his hands.

homeschool-it was my PT, too, that figured out something was up. Unfortunately he's no longer there and I'm lost. I thought I found a new one that understood, but then day 2 of PT came yesterday and she had me doing so much despite my objections (all the while telling me how easy she was working me) that I came home and collapsed and cried. Today I went back to bed after the kids went to school and slept three hours straight. So I don't know what I'll do.

clan-my youngest gets pain any time she goes more than a couple days without her orthotics. Any chance your daughter has been on spring break recently and not wearing her smo's as often? Also, I have ankle pain and the bracing wasn't helping. I was sent to a wonderful guy that knew nothing of EDS. So, he called some contacts that did, and he ended up casting me for what are called UCB shells. Apparently my feet are so hypermobile and turned inwards that ankle braces don't support me properly. Bracing the foot into its proper position takes a lot of stress off the ankle ligaments. The foot braces are built up on the outside edge because when he straightened my feet they weren't flat to the ground anymore. They go up to just below the ankle bones and cup the entire back of the foot, stopping just before the toes. They are extremely rigid so it took a few weeks of building up to it, but now I can wear them most of the day. Anyway, just a few thoughts

Last edited by Mommee; 04-22-2014 at 12:12 PM. Reason: EDS hands haha
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Old 04-22-2014, 02:13 PM   #24
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My DD hasn't started spring break yet. I'm actually pretty worried about spring break because she's going on a school trip where they'll be go-go-go from the time they get up until they crash at night. I'm sending a wheelchair for her and I've talked with the nurses who are going along but I can't help but be nervous for her. Of course I've also got the anxiety of her dining without me for 6 days with her long list of food allergies & intolerance. I'm going to be a basket case by the time she gets home. She'll be wearing her running shoes the whole time therefore her SMOs. At home, she really doesn't wear them much on the weekend even though I remind her. Heck, I can't even get her to wear her elastics on her dental braces.

I googled UCB orthotics and DD13's SMOs are similar except they extend up higher to the ankle. They are visible over the edge of her shoes. The UCB looks to be a foot orthotic while the SMO is foot and ankle. I wouldn't have been able to get my insurance company to pay for UCBs but they did pay for SMOs because it's for the ankle. They were custom molded to her feet and ankles. I'm not actually sure she needs the ankle support part of it but without it insurance would not have paid as foot orthotics are excluded by most policies unless it's for diabetes (yeah, that makes sense, NOT). Like you, she needs the foot support to align her legs properly.

Her pain did seem to disappear just as suddenly as it appeared. I really don't understand how that's possible but it's what happened. Probably hormones like WheeledTraveler suggested. I wish there was some kind of black and white instruction manual to go along with all this.

And now back to figuring out my other DD's issues. It seems she's been having a lot of leg pain as well, especially on stairs (even just a single flight). She is out of shape so I've been kind of ignoring her despite having a high enough Beighton score to get an EDS diagnosis. With her autism, minor pains tend to be earth shattering and major ones tend to not register until they're extreme. I've been treating her complaints of leg pains as the former but now I'm wondering if they've gone into the latter category. She's never had any kind of injury so I never followed up. Well, it seems that the pain is worse than I've been acknowledging. UGH!! I have to wait until she's done with a round of antibiotics because she currently has strep and for her one of the symptoms of strep is leg and joint pain so I need to see where she's at after it's cleared up. She never presents in any way the way textbooks say she should so I never know what to make of her symptoms. UGH again!!
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Old 04-22-2014, 04:14 PM   #25
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Ugh bad day lol. I totally misread your post and thought the photo was what your daughter had now. So she doesn't have the EDS diagnosis? My insurance also doesn't cover foot orthoses except for diabetes, but they billed it with the EDS code and it was approved.
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Old 04-22-2014, 04:26 PM   #26
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Ugh bad day lol. I totally misread your post and thought the photo was what your daughter had now. So she doesn't have the EDS diagnosis? My insurance also doesn't cover foot orthoses except for diabetes, but they billed it with the EDS code and it was approved.
Ok I just googled smo. It does look similar except mine stops right below the ankle bone (so still sticks out of the shoe and I think mine is much more rigid because there's no way I can pull it open. I have to turn my foot sideways to get it in. The photos of the UCB I'm seeing aren't quite as substantial as the ones I have. But in the future I'll ask about making me an AFo then cut it down if my insurance changes.
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Old 04-23-2014, 09:56 AM   #27
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My 13yo has an EDS diagnosis but she actually got the SMOs before we had the diagnosis. Her PT recommended them and I got our GP to write the order for them so that insurance would cover them.

My 16yo was given an EDS diagnosis by her primary but it was just a tentative diagnosis since she was really only borderline on the Beighton scale (based on the GP's tests; I disagreed with her on a couple measurements). She hadn't had any EDS related problems that we noticed at that point though so I never actually followed up. I think now I need to. I just need to wait until I'm sure the strep is gone before approaching figuring out the pain issues because the same kind of pain also goes along with strep for her. Once she's finished her antibiotics I'll probably make an appointment to get her retested for strep to make sure it's actually gone and at the same time discuss the pain with the doctor.
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Old 04-23-2014, 10:25 AM   #28
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We are struggling with shoulder dislocations here this week.
Not good. Not fun. brace --> immobilizer --> physical therapy
and repeat.
Still, this is better than surgery, so I should be counting blessings.
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Old 04-23-2014, 11:01 AM   #29
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Her shoulder dislocated again? Does the PT have any recommendations for her to help cut down on how often this happens? I remember you were very optimistic about the approach of this particular PT.
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Old 04-23-2014, 12:26 PM   #30
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Yes, the PT is great. He really is and if we had unlimited funds, we could keep her in regular 3x a week appointments with him year round. Unfortunately, his bill is usually around $465 per session (he's in a hospital and everything is expensive) so we have to be particular about how we use our 27 sessions (insured) a year. We have home routine the rest of the time and she DOES do her exercises, but not to the work out degree that she does in PT with her therapists. She really gives her best when working with him. Her shoulders dislocate pretty often, it seems, but mostly she pops them back in and she stays put. About 2 times a year, it seems, she has instability and ends up in a brace as well as through the runner with xrays, mri's, doctor visits and tests.
This time, she is doing really good at home and I am thinking it's looking positive (I think it's going to stay in for good).
She dislocated a lot at school, and part of that is just getting bumped in hallways. They have safety protocols that they implement for her and she will be very careful when she goes back.
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