Extreme Joint Flexibility in a Child

[wendyroo]

One day a couple months ago, my 7 year old daughter announced that she could do the splits. I had never seen her stretching or working toward that goal, so I thought the chances were low...I was wrong. With no effort or training she was painlessly able to do full front and side splits.

Since then she has begun gymnastics classes, and yesterday her coach mentioned that since Audrey was able to do the splits, that she could start slowly working toward putting blocks under her feet while doing the splits to further stretch her legs. Today Audrey grabbed some Amazon boxes and demonstrated that she can effortlessly prop both her feet 9 inches off the ground while doing the splits. Her legs are not that long - 9 inches on each side meant her legs were making way more than a 180 degree angle.

This does not seem normal to me. Even the other girls in her gymnastics class who I would consider very flexible have to work towards doing splits. It feels a bit concerning that Audrey's hip joints are soooo flexible with no effort on her part. But I'm not sure who I would reach out to with my questions and concerns. The gymnastics coach? Her pediatrician? Audrey's flexibility in other joints seems much more typical; she is not double jointed that I know of.

Does anyone have knowledge, advice or relevant experiences to share?

Thanks

 

[Katy]

There are certainly connective tissue disorders I would be concerned about too. I’m not sure any are super dangerous at her age though. I’d call the nurse at your pediatrician’s office and ask. 

[regentrude]

Read the description of Ehlers-Danlos syndrome and see if this fits. It's often not diagnosed until years of doctor Odyssey... hyperflexibility is one of the hallmark signs

[historically accurate]

2 of my kids are hypermobile. I am as well. We have finally been diagnosed with Ehlers Danlos Syndrome. It may not be a problem (it's really not for me - I'm just "loose" and clutzy), but one of my kids has had 4 surgeries on joints that won't stay in the socket and the other has POTS.

I'd call her pediatrician and ask about it.

You could run her through the Beighton test in a few minutes - I'm pretty sure a 6 on it would qualify her as hypermobile. https://www.ehlers-danlos.com/assessing-joint-hypermobility/

[kbutton]

Patterns of hypermobility differ by connective tissue disorder. My son has one of the dangerous ones (and is expected to live a normal lifespan with treatment), and he is both too loose and too tight depending on the spot. His hips and shoulders can move completely in and out of their sockets without pain. 

https://marfan.org/  They cover Marfan Syndrome, Loeys-Dietz, and vEDS, all of which are some of the more complicated and dangerous CTDs. ***See their systemic score calculator: https://marfan.org/dx/score/ ***

https://www.ehlers-danlos.com/ehlers-danlos-info/

 

[prairiewindmomma]

Nodding at the hypermobility concerns….even sub clinical hyper mobility can prove problematic with sprains and subluxations….but I would definitely want a rule out of more serious diagnoses.

Also, stay the heck away from chiropractors with her until you get this sorted. There can be strong counter indications here…

[wendyroo]

22 minutes ago, historically accurate said:

2 of my kids are hypermobile. I am as well. We have finally been diagnosed with Ehlers Danlos Syndrome. It may not be a problem (it's really not for me - I'm just "loose" and clutzy), but one of my kids has had 4 surgeries on joints that won't stay in the socket and the other has POTS.

I'd call her pediatrician and ask about it.

You could run her through the Beighton test in a few minutes - I'm pretty sure a 6 on it would qualify her as hypermobile. https://www.ehlers-danlos.com/assessing-joint-hypermobility/

Okay, I will run her through that test tomorrow. I don't have a clue about pinkies or elbows, but I know for a fact she can put her palms flat on the floor without bending her knees. 

[wendyroo]

1 minute ago, prairiewindmomma said:

Nodding at the hypermobility concerns….even sub clinical hyper mobility can prove problematic with sprains and subluxations….but I would definitely want a rule out of more serious diagnoses.

Also, stay the heck away from chiropractors with her until you get this sorted. There can be strong counter indications here…

We have never gone to chiropractors, so no issues there.

I will get Audrey to show me just how bendy all her parts are tomorrow and then I will call her pediatrician's nurse and see if they want to see her or refer her.

[gardenmom5]

Ehlers-Danlos (there are at least two types) is a genetic disorder that affects connective tissue, and one type is hypermobility.  My sister used to do "witches" fingers as a kid and would freak people out.  She was diagnosed in her 40s. (maybe even her 50s)

If either of the descriptions sound like a possibility, I would suggest getting her tested at least to rule it out.  It can be treated, there is no cure.

 

[Guest]

I haven't read all the posts, but I would have her screened for Ehler's Danlos. 

[gardenmom5]

19 minutes ago, wendyroo said:

We have never gone to chiropractors, so no issues there.

I will get Audrey to show me just how bendy all her parts are tomorrow and then I will call her pediatrician's nurse and see if they want to see her or refer her.

Make it clear you want her screened by someone who is familiar with connective-tissue-disorders.  Some offices will brush off things with which they're not overly familiar. (or if the person is having a bad day.)

[scholarly]

My 9 year old has hypermobility and has been diagnosed with EDS.  She also has low muscle tone and femoral torsion with that. She has done several stints in physical therapy. We also have to avoid sports and activities that have a greater chance of causing sprains when she overextends her already loose joints. No trampolines for her, but swim club has done wonders to help strengthen her muscles and gain endurance while still being easy on her joints. 

One interesting thing is that she also did pediatric pelvic floor therapy, as EDS can affect the pelvic floor. (She had issues with constipation and incontinence). We still don't have everything figured out for her, but we first went to her primary dr. We ended up consulting with an orthopedic surgeon, physical therapists, urologist, orthotist, and physical medicine doctor throughout the process. The physical medicine doctor was the best for figuring out what she has, but the physical therapists have been invaluable in teaching her how to use her body safely and properly.

[Ottakee]

Another vote for EDS.

I find it interesting that Dr Hive here all come up with this when so many doctors are clueless.  I have a friend with severe EDS and 2 relatives with likely EDS and many doctors don’t seem to know much.

[Lawyer&Mom]

I have hEDS and could never do the splits…. So yeah, in her case I would absolutely consider it.  I’d also be really careful about over extending her joints. Just because she can doesn’t mean she should.   

[plansrme]

Please keep in mind that it might NOT be EDS. It might just be that she is very flexible. A lot of young gymnasts are flexible (she more so than most, certainly-oversplits are hard for nearly everyone) and tighten up as they get older. In her case, a little tightening-up would probably keep her from getting injured as easily regardless of the activity she pursues.

[The Governess]

I’d get her screened, but just as another data point, my youngest was super flexible like this and it wasn’t EDS. She’s still more flexible than normal at 16 but has lost some of her flexibility as she has grown older. She was a gymnast also.

[Tanaqui]

While it could be nothing, I also think she needs to be screened. Issues with connective tissue affect - well, everything. It's not just the joints - it's the potential for migraines, for heart problems, for slow healing of wounds....

Better to know as soon as possible if this is a thing, and start a paper trail if it *might* be a thing. (Doctors are wont to say that toxic bit about the zebras, so it often takes a lot of visits to get a diagnosis.)

[wendyroo]

13 hours ago, historically accurate said:

You could run her through the Beighton test in a few minutes - I'm pretty sure a 6 on it would qualify her as hypermobile. https://www.ehlers-danlos.com/assessing-joint-hypermobility/

She got a 6 on the Beighton. She hit all the markers except her elbows.

I'll call the pediatrician today and push to get her seen by someone who can do a thorough assessment.

[historically accurate]

9 hours ago, wendyroo said:

She got a 6 on the Beighton. She hit all the markers except her elbows.

I'll call the pediatrician today and push to get her seen by someone who can do a thorough assessment.

I hope it's nothing, but I'm glad you're looking into it.

 

Edited December 30, 2022 by historically accurate

[Amy in NH]

My 17yo dancer was recently assessed for hEDS by a specialist who diagnosed her with Generalized Hypermobility Spectrum Disorder.  The diagnostic criteria for hEDS has changed recently in an effort to find the genetic marker, and after it is discovered they will go back and retest everyone with GHSD.  So even though she passed on the Beighton Scale, she didn't with some of the new criteria.  She's since been to PT three times for subluxing shoulder and hyperextending knee at dance, and hip while climbing.  The specialist told us that swimming is the best sport to strengthen muscles surrounding the joints, which is necessary to hold them together due to failure of the connective tissues.  Also, apparently ~80% of professional dancers have hEDS or GHSD.

[OH_Homeschooler]

14 hours ago, gardenmom5 said:

Make it clear you want her screened by someone who is familiar with connective-tissue-disorders.  Some offices will brush off things with which they're not overly familiar. (or if the person is having a bad day.)

Two of my kids were diagnosed with EDS this year. I think we were "lucky" that the nurse practitioner who diagnosed them has EDS herself. 

[Brittany1116]

I was a super flexible kid and could do all kinds of contortion and splits with no training. I didn't have pain with any of it. One of my sisters, however, has generalized hypermobility and had chronic pain playing sports. Interestingly to me, she went on to become an OT.

My oldest also hyperextends joints easily. Giving 100% in athletics causes him pain. He has low muscle tone despite his athletic ability to run, throw, etc. Trying to coordinate his body to do a push-up or sit-up is difficult. We are exploring options for help.

[mom2scouts]

Yes, my children are like this and I was super flexible as a child. We have hypermobility and it's caused problems for all of us, but we have not been assessed for EDS. DS completely sheared off his kneecap when his knee dislocated. DD has been a competitive gymnast and dancer and it's a huge advantage in those sports, but she often has knee and ankle pain. She can do *way more* than a 9 inch oversplit without trying and never needs to stretch. I have a video of her doing a leap and if you pause it you can see her knee hyperextending 30 degrees or more. I've dislocated my knee multiple times and broken/sprained my ankle several times too due to it rolling. I'm overweight and out of shape and still pass almost all of the tests on the Beighton Scale. As others have said, it's likely a genetic connective tissue disorder. If your dd is going to continue as a gymnast, she needs to learn how to strengthen the muscles around the joints.

[Terabith]

I think I would ask her in the meantime not to do splits with Amazon boxes.  I wouldn’t be too worried about an 8 year old doing splits on their own, but I think overstretching should be saved for the gym or something supervised because I would worry about dislocations.  I have no real idea though. Both I and my husband have always been fairly flexible but in a typical, not quite hyper mobile way.  My kids are…NOT flexible.  My oldest had to leave ballet because even with a lot of work, they were unable to do flexibility things that were expected.  

[Matryoshka]

16 hours ago, Lawyer&Mom said:

I have hEDS and could never do the splits…. So yeah, in her case I would absolutely consider it.  I’d also be really careful about over extending her joints. Just because she can doesn’t mean she should.   

All three of my kids have hEDS (there are 14+ different kinds that have known genetic markers, hEDS is the most common but also doesn't have an identified gene yet so could actually also be more than one kind) and while two could do a split, that was after training for it, not effortless.  But things pop out on them all the time, they have POTS and MCAS, which are often comorbid with EDS.  Two had tethered cord, which they've had surgery for - (this might be a reason for the not as easy splits - nerves don't stretch).

I keep thinking all those gymnasts and dancers and acrobats who do 180+ splits can't all have EDS, because EDS can really be debilitating, and they (all those dancers/gymnasts/acrobats) seem just fine.  But since EDS is debilitating, and can get a lot worse after puberty, I'd definitely want to be ruling it out.  A huge part of your body is made up of connective tissue, so it's not just bendiness but can affect eyes, hearing, digestive system, vascular system... 

[Ting Tang]

I'd talk to both a doctor and the coach.

Let's say she is just flexible....read on about what I've learned....

My daughter is 8 and is naturally flexible, but we slowed down on the attention to flexibility to have her work on strength and control.  And when I took her to her new ballet instructor, we learned that she wasn't necessarily doing the stretches correctly.  Now she doesn't appear to be as flexible in certain positions, but she is doing them correctly.  Flexibility is no longer anything "special" in a lot of artistic sports.  It's a requirement, so I've learned that it is really important for kids to focus on core strength and control, too.  And that will help reduce injury.  Anyway, I have just learned so much. 

Kudos to you for looking out for your daughter.  

 

[Matryoshka]

11 minutes ago, Ting Tang said:

I'd talk to both a doctor and the coach.

Let's say she is just flexible....read on about what I've learned....

My daughter is 8 and is naturally flexible, but we slowed down on the attention to flexibility to have her work on strength and control.  And when I took her to her new ballet instructor, we learned that she wasn't necessarily doing the stretches correctly.  Now she doesn't appear to be as flexible in certain positions, but she is doing them correctly.  Flexibility is no longer anything "special" in a lot of artistic sports.  It's a requirement, so I've learned that it is really important for kids to focus on core strength and control, too.  And that will help reduce injury.  Anyway, I have just learned so much. 

Kudos to you for looking out for your daughter.  

YES.  This is super-important.  One of the things that actually really helps EDS is targeted strength training, because stronger muscles can help compensate for weak connective tissue.  But even without connective tissue problems, making sure you're stretching muscles, not tendons or ligaments, and keeping those muscles strong to support correct movement generally, will help prevent injury.

[wendyroo]

7 minutes ago, Matryoshka said:

YES.  This is super-important.  One of the things that actually really helps EDS is targeted strength training, because stronger muscles can help compensate for weak connective tissue.  But even without connective tissue problems, making sure you're stretching muscles, not tendons or ligaments, and keeping those muscles strong to support correct movement generally, will help prevent injury.

One saving grace is that Audrey is already super strong for her age/size. She doesn't quite have the balance to stay in a handstand for prolonged periods, but with one toe touching a wall for balance, she can hold herself up in handstand position for long periods of time. She also has incredible core and leg strength. She loves strength training...on the chin-up bar, with resistance bands and with free weights when my husband will supervise. She is on the far hyper end of the ADHD spectrum, so she never stops moving.

So I think my first goal is to rule out any disorders that would need monitoring or treatment. And my second goal is to then get specific training on how she should be exercising to avoid injury.

[kbutton]

2 hours ago, Matryoshka said:

I keep thinking all those gymnasts and dancers and acrobats who do 180+ splits can't all have EDS, because EDS can really be debilitating, and they (all those dancers/gymnasts/acrobats) seem just fine.  But since EDS is debilitating, and can get a lot worse after puberty, I'd definitely want to be ruling it out.  A huge part of your body is made up of connective tissue, so it's not just bendiness but can affect eyes, hearing, digestive system, vascular system... 

While I agree that they probably don't all have EDS, I learned at conference that at least for vEDS, there are people who would never know they were affected if a family member hadn't been identified, and they are totally fine. They said that because vEDS was considered more rare than it is, and people were mostly identified because they had health issues, it was skewing the stats on lifespan, etc. With better detection, it's becoming more evident that some people are very minimally affected. I assume the same can happen for all CTDs (there is definitely a spectrum of severity with Marfan also, with neonatal Marfan being the most severe). 

Seconding you on the worsening after puberty!

8 minutes ago, wendyroo said:

She loves strength training...on the chin-up bar, with resistance bands and with free weights when my husband will supervise. She is on the far hyper end of the ADHD spectrum, so she never stops moving.

Some of this sounds like sensory seeking due to retained reflexes. Just a heads up that while they can improve greatly with OT and/or PT, but with CTDs, they might not ever integrate all the way. It doesn't mean it's not worth trying, but it does mean that the reflexes might not get rock solid--it was still very much worth our time to have my son do reflex work (life-changing actually). Retained reflexes/sensory stuff can be very intertwined with anxiety. 

[Lawyer&Mom]

2 hours ago, Matryoshka said:

All three of my kids have hEDS (there are 14+ different kinds that have known genetic markers, hEDS is the most common but also doesn't have an identified gene yet so could actually also be more than one kind) and while two could do a split, that was after training for it, not effortless.  But things pop out on them all the time, they have POTS and MCAS, which are often comorbid with EDS.  Two had tethered cord, which they've had surgery for - (this might be a reason for the not as easy splits - nerves don't stretch).

I keep thinking all those gymnasts and dancers and acrobats who do 180+ splits can't all have EDS, because EDS can really be debilitating, and they (all those dancers/gymnasts/acrobats) seem just fine.  But since EDS is debilitating, and can get a lot worse after puberty, I'd definitely want to be ruling it out.  A huge part of your body is made up of connective tissue, so it's not just bendiness but can affect eyes, hearing, digestive system, vascular system... 

I have it all: hEDS, orthostatic intolerance, MCAS, Autism…. And yet I lived my whole life without any diagnoses, until fought for an Autism diagnosis at 38.  I do think all those dancers could have hEDS.  I think there are *a lot* of undiagnosed cases.  It can be severely debilitating, it can also just be low grade but constant pain and fatigue that people assume is normal because they don’t know any other way.   Chronic conditions can be sneaky like that!

 I didn’t know hEDS was even a thing until someone on this board mentioned it as a possible comorbidity after my Autism diagnosis.  Now I know that nearly everyone on one side of my family has it.  I’m sure there are many families like mine that still have no idea. 

[1234]

11 minutes ago, Lawyer&Mom said:

I have it all: hEDS, orthostatic intolerance, MCAS, Autism…. And yet I lived my whole life without any diagnoses, until fought for an Autism diagnosis at 38.  I do think all those dancers could have hEDS.  I think there are *a lot* of undiagnosed cases.  It can be severely debilitating, it can also just be low grade but constant pain and fatigue that people assume is normal because they don’t know any other way.   Chronic conditions can be sneaky like that!

 I didn’t know hEDS was even a thing until someone on this board mentioned it as a possible comorbidity after my Autism diagnosis.  Now I know that nearly everyone on one side of my family has it.  I’m sure there are many families like mine that still have no idea. 

My ASD kiddo didn’t realize their pain wasn’t normal until they asked a question a specific way at age sixteen. I’ve watched this dc deteriorate since they were twelve (they are now 21). It’s been awful.

They have also been diagnosed with POTS and hEDS. We’re heading back to the pain specialist next week because I think there are some nerve issues causing a lot of the pain in one leg. Physical therapy has helped so much this year but this one leg of theirs prohibits them from doing so many things because dc is in so much pain. 

[Matryoshka]

31 minutes ago, Lawyer&Mom said:

I have it all: hEDS, orthostatic intolerance, MCAS, Autism…. And yet I lived my whole life without any diagnoses, until fought for an Autism diagnosis at 38.  I do think all those dancers could have hEDS.  I think there are *a lot* of undiagnosed cases.  It can be severely debilitating, it can also just be low grade but constant pain and fatigue that people assume is normal because they don’t know any other way.   Chronic conditions can be sneaky like that!

 I didn’t know hEDS was even a thing until someone on this board mentioned it as a possible comorbidity after my Autism diagnosis.  Now I know that nearly everyone on one side of my family has it.  I’m sure there are many families like mine that still have no idea. 

I'd never heard of it till the first of my kids was diagnosed, now I know *so* many people who have it, especially the younger generation.  I know it's genetic, but honestly I'm not convinced there isn't something epigenetic going on that it's so prevalent now.  I don't have it.  I don't think dh does (although it can be much less obvious in men - as with so many things, female hormones seem to make it worse - part of why it often shows up more seriously after puberty).  But how can what seems like most of my friends' kids have it, when it doesn't seem like any of the parents do - certainly not all of them? And my DIL, who comes from halfway around the world? Not to mention all the people on here on the boards.  If it ever was, it certainly isn't the 'rare' condition it was made out to be anymore.

I certainly had never heard of occult tethered cord, which can be another comorbidity with EDS, and now know half a dozen (or more?) people who have had surgery to repair it (and have been very much helped by it!).

[StarSailor]

I am a long time reader/lurker that doesn’t post much.  But I have two kids that live with this.  And i apologize this is long, i am not a concise writer.

 

I have one with diagnosed hEDS, 9/9 on Beighton, also has POTS and PANDAS, plus deficient trochlea and hip dysplasia.  No daily on-going pain, but extremely painful history of knee dislocations and severe knee subluxations, even with surgery. Has “as needed” accommodations at college for elevator usage, 1st floor dorm room, excused if late to class, etc.  (these are standard accommodations uni gives to any student with EDS diagnosis)
 

second child with “hyperflexibility syndrome” as they are only 5/9 on Beighton.  Highly flexible in many joints but can’t  do the thumb/pinky joints, so no EDS diagnosis.  Much more impacted by daily pain, etc.  Also has scoliosis, bad TMJ, and hip/knee/ankle mal-alignment.

 

for both, the hyperflexibility got much worse at puberty. And at that point each child had to make hard choices with regards to physical activities due to pain, bad sprains, dislocations, etc.  I wish we had earlier diagnosis so we could have chosen low impact activities at a young age.

 

First child, pediatrician sent us to rheumatologist, who sent us to genetics for official EDS diagnosis.  Geneticist was quite frankly a jerk.  Gave diagnosis due to Beighton scale, but said EDS does not cause her pain.  Thankfully we use a rheumatologist, with background in sports med, for on-going care.  And have been blessed with good, experienced PTs.

second child we just took to the good rheumatologist. 

 

Doc will want to know genetic family history.  It is almost impossible to get diagnosis without having other family members who are hyper flexible.  My kids are adopted, no genetic history, and not bio siblings.  They are true medical zebras.

In our experience it may take time to get to right diagnosis.  Make sure you and DD clearly understand when doc says “can you do x?”  We had issues as my child thought “can you touch the floor” meant “touch the floor”.  We didn’t know she meant put palms on floor.  And due to knee subluxation issues that child always stands with knees not quite straight, so no beighton points for knees.  We had to go to a different hospital system/docs and start over in order to get diagnosis.

 

if available i recommend finding experienced EDS rheumatologist/genetics doc at pediatric facility.  We use a scottish rite hospital.  Some shriners also do ortho and may do EDS.

 

Ask around and find good PT with EDS experience.  Often facilities that do sports rehab do well with this. An inexperienced PT can make things worse by doing too many reps or exercises that are not good for loose joints.  You will cycle in and out of PT, periodic “tune ups” will be needed.

 

Start with a good PT eval to make sure all muscles are equally strong.  Both of mine appeared strong and physically fit, but both had weak muscles and were compensating with other muscles.  This is why sports rehab PTs have worked well. Aquatic PT has been a huge help.  Also, both of my kids have 30 min exercise programs, tailored to them, to do daily.

 

Two things I wish I knew sooner:

 

- do NOT go past joint end points.  Ie, do not hyperextend joints or do regular activities that cause joints to sublux.  Once a ligament is hyperextended it will not go back to normal and that joint will then easily sprain, cause pain, etc.  Gently, i would not have DD do splits, especially not past regular splits.  In our experience coaches do not have medical understanding to realize the harm they can cause to hyperflexible kids.  Plus they expect them to work through pain, when an EDS patient needs to listen to pain and stop.

 

- never do surgery unless absolutely no choice.  Because of hyperflexibility, surgery does not tend to give results that last. You will find a lot of blogs where EDS patients have history of lots of surgery.  But issues don’t stay fixed for long.  Docs are beginning to realize that surgery is not the answer, it does not fix the connective tissue issues.  Keeping muscles strong is much better option.  We also use targeted bracing for certain activities.

 

Hardest thing docs have said to my kids is find low-impact, non-loading sports.  Its hard to change what you love doing. Its been trial and error and some injuries.  One of mine has dislocated a knee swimming, so thats a no-go for her.  Both can horse ride, rec level, as long as they use an English saddle and sometimes no stirrups.  One child is currently doing highly modified TKD, because they thrived in TKD prior to puberty.  And studio has other students, including blackbelts, with modifications.

 

There is an EDS website, with good info.  Also, i have an old “yearly screening” document from Ehlers Danlos National Foundation.  www.ednf.org  (not sure if this still exists) It lists many of the co-morbid medical diagnosis that go along with hEDS.  It helped me put together all the medical puzzle pieces.

 

sorry this is long.  hEDS impacts many ADL’s for us.  I am happy to share the tips and tricks if that would ever be helpful.

 

most importantly, have your daughter look up what a group of zebras is called.  Tell her she will indeed “dazzle”.  She is part of a wonderful amazing group of zebras.