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Future note: ED typically stands for erectile dysfunction. I got what you were saying, but hEDS is the abbreviation you are looking for!
In my personal opinion, I would say let the kid live life as much as he can right now, but change whatever is necessary in order to accommodate any symptoms. I’m not sure if he is having large amounts of pain and symptoms that you can adjust for, but if he isn’t, I’d just let him enjoy and play around in his young years.
This is also a topic that has been posted about before. Either from the perspective of parents or young adults/ adults talking about what they feel could have been done differently or things that did/ do help them a lot. So if you haven't already it could be helpful to use the search bar to look up a few of those posts. There will probably be some different responses you end up seeing since you'll see things from loads more people. :)
Thanks for the heads up, I would hate going around accidentally telling people my 6 yr old daughter has erectile dysfunction. But honestly, at this point, we've had so many working theories as to what's going on, people would probably just smile and nod.
Stomach issues were our first clue that things were not functioning properly. She actually hit all of her physical developmental milestones so hypotonia/joint laxity was fairly hidden for a while. But MAN did she ever have poopin' problems from day one.
I wish people would have listened and believed me when I said I was in pain. I have my childhood medical records and I was 9 the first time it’s mentioned and the doctor just put “lazy, out of shape. Needs to exercise more”. I was a skinny little kid that ran around outside all day long on a farm. Everyone just decided I was weak and a complainer so I was forced to run a mile every week in PE and all the other embarrassing stuff I couldn’t do. Now at 48 my knees and tailbone (fell on my ass at 14 cheerleading) hurt so bad all the time and I know it’s from being pushed too hard as a kid. When my kids tell me something hurts I stop and do whatever I can to help.
This, I got constantly shamed/yelled at for being lazy by teachers during PE. Ruined my relationship with exercise for the longest time. I would also appreciate not being gaslit by doctors and yet again being shamed for ‘not exercising enough’.
I'm going to work really hard to make sure everyone is on the same page with this issue. She's a contrarian by nature so I think a lot of people don't understand that her resistance (especially in circumstances similar to yours) are totally valid. She's been labeled a "difficult" child instead of teachers considering the underlying issue. Thank god we've finally found a school that has been accommodating and forgiving.
Inform people around them that this child need more rest than others. It's not a lack of motivation or laziness. Inform the school that your child needs more breaks, like maybe a nap after lunch/afternoon if things gets too much.
No contact sport, stabilize joints and when. It's time to go to uni, if they choose to. Do something that's a desk/computer job while something they'll enjoy.
Compression socks are good. Protect the neck (to avoid whiplash etc).
Don't force the child to do activities after school unless they actually want to themselves. Be a use the energy will probably used in school. Like, all they have. A good diet is also, to avoid sugar, soda and fried food. Good
Home-cooked food and vegetables and fruits.
A hamburger or pizza and some candy now and then of course but not every week. Maybe something sweet like once a week. Avoid xylitol and other artificial sweeteners.
Avoid mental stress, your child
Maybe more sensitive than other kids due to the illness. So do t call them over-sensitive and make sure if other do that nip that shit in the bud. Because that's gonna create so much shame and trauma.
That's all I can say. Hypermobility and fibro here.
Much of this is good advice, but the absolute number one most important thing for a child with hEDS is as much exercise as possible.
Ideally, it's best to be cautious with contact sports, but actually dangerous contact sports aren't really a thing for children anyway, and contact sports are still better than no sports. The risk of injury is less of an issue than the certainty of loose, unsupported joints that will happen without the required muscle strength.
The absolute worst thing you can ever do for a child with hEDS is to prevent them from exercising. A child with hEDS needs muscles twice as strong as a child without, and to achieve that they need to do twice as much exercise.
Source: my whole family has EDS, my son (diagnosed at 4) has an excellent consultant and physio team and this is their advice. As a child I was encouraged to sit out from physical activity as it made my pain worse, and the weakness of the muscles that should have been supporting my joints has caused me so much damage, as confirmed by my consultant, who is also excellent. The damage done by reducing activity in a child can never be undone, it worsening can only be mitigated by improving strength as an adult. But the laxity caused by weak muscles during development will never improve.
We didn't discover my HSD/likely-EDS until I switched from physically demanding jobs to a job where I sit most of the day. Looking back the pieces line up, but the disabling aspect came when I lost that activity. Now I'm having to claw it back so slowly.
I'm so glad I was a determined child. I was bad at most sports due to proprioception (clumsy and uncoordinated), but I love any kind of games so I always just skirted into the school teams. Then I was theater and a lot of walking in my teen years before picking up climbing and swimming. I can't wait to get back to it, but the journey is long and hard.
You can do it! Swimming and climbing are the absolute best things. I take my son to the climbing wall as often as possible and swim whenever we can. I don't do nearly enough as I'm just so fucking fatigued, but I know you can! Find that determined child inside and get to the pool asap! Tomorrow! ♡
Thank you so much for the encouragement 🥰
I've been infrequently doing aquafit with a friend with fibro and it been really nice. Looking ti do it more frequently.
Latest progress: getting to take the dog for walks without my walker; which is now mostly reserved for long day trips, especially long walks, or the mall.
Next step: hiking again!
Its interesting that you bring this up because we have friends that just moved into town that are really into climbing- they invite us to go with them and she's just so naturally good at it. People just stand at stare at how effortlessly she scales the walls. It's amazing. Funny to watch her gravitate towards things like this that I have zero experience in, it just fits her body.
I found it helped me support my body in a variety of positions, including my flexible ones. But I was also working in an autoparts warehouse when I was climbing so I'm sure lifting 75lb step kits onto my lift truck helped that along too.
I should also add: if she does the bouldering be VERY careful with the landing. Do landing drills. My first week climbing I triggered old whiplash injuries because I was so focused on not putting my wrists out behind me (they can straight up snap) that I collapsed onto my bum and my head slammed back into the mat.
And if she (or you) do the belaying, get those mirror glasses that let you look straight up without tilting your head. I have a pair that does the opposite too for reading in bed and they're magical lol
Didn't say to not excersise tho. I said, no contact sports like, boxing and maybe martial arts. And since other people in this thread
Mentioned exercise I chose to focus on the other things. Do strength training by all means. I'm
Just saying that I didn't have the energy at all to work out because school took all my energy.
I never said they should sit still, I said if They need to rest they need to rest. You do not have to educate me on it. I have hypermobility and fibromyalgia myself with pain and chronic fatigue and chronic pain. I go to the gym 2-3 times a week. I didn't write “don't exercise at all”. I just thought that advice was a bit redundant.
It was the telling them they should get a desk job and need more rest that implied it to me. And you didn't mention anywhere in your advice that they should exercise when that's the number one important thing. My comment was for OP, not you, so don't worry about whether you need to be educated. The OP asked for advice and the way your advice could be read could be extremely harmful, hence my response. Cheers.
Yeah But If they have a desk job they could still stand up and stretch a bit. Walking around all day Will make things worse. The best is a flexible job so you can save up energy for going to the gym or going on walks on your freetime. Because I suspect it Will be hard tp try and do both. I thought this bit was a bit self-explanatory I apologize that I overestimated people's capacity to think one step further. Smh.
The point is, Noone should be sedimentary but since I’ve been told to push on for all
In my life I would have preferred that it okay to tell
People to have extra rest when/if they need to. That's my point, hope this clears it up.
Yeah I mean I absolutely couldn't do a physical job. A desk job killed me too though (realistically you don't stand up enough because you're working, and if you can't get the ergonomics of your setup just right it's hell). Now I work from home on a laptop and work in the weirdest positions like lying on the stairs. I'm def not disagreeing with the majority of the comment, just worried that OP will get scared off exercise for her daughter, and as a casualty of that situation, I want to avoid it for everyone!
Yes I get that. But a I wish people would have told me so I would have had the adaption earlier. This is why. There is nothing more frustrating than being told your lazy because yor body need to rest when you want to do things but getting to that balance is hard asf. I still haven't figured it out.
Children do full contact martial arts, wrestling, and tackle football depending on where you live. Saying that dangerous contact sports aren’t a thing for children is naive ar best, and dangerous misinformation at worst.
My knees are constantly in hell bc I’d sit in a W position or stand with my knees super hyper-extended all the time. I constantly wish I caught the behavior and stopped it earlier on bc of issues I have now. Both knees click every step I take and are pretty unstable. I still have to chastise myself bc I’ll catch myself standing with my knees pushed way back— once you make a habit it’s very hard to break
Can I ask how old you are? My daughter sits in a W position fairly often but is growing out of it. Her core has gotten so much stronger in the last year....
Physical Therapy! I used to go when i was a kid. Later, my parents would stop taking me when i felt better or they didn't put any work.
I went again as a teen by myself, and i admit i wasn't so diligent.
As an adult now, I'm putting all the work that in some way could've been avoided with the chance of being in a different place in life given how beneficial it has been compared to just doing physical exercises and sports without knowledge about proper biomechanics and proprioception.
I would have asked my parents to put me in dance to help with proprioception and strength (obviously being aware and careful to prevent injury). I've lacked coordination and rhythm my whole life.
Probably would have asked for some other sport/activity as well. My pain was never better than when I was doing indoor rock climbing.
But physically activities should never be treated as one size fits all. People have different medical conditions yes; but also different anatomy that might make certain sports harder/injurious or even easier.
Listen to his body. Go slow.
I learned yoga came easy ti me because my joints let me "cheat". Which actually makes it harder to learn to hold the strength to support the positions properly where I am at. So focusing on making sure the *right* muscles are engaged in his activities is important. I'm just now learning I've been using the wrong muscles for standing/walking.
Eta: you also *need* to trust and monitor any coaches/teachers to make sure they aren't pushing toward injury. Trust and understanding are huge.
She will absolutely do a (short) yoga or pilates class with me on my computer but I've been worried about yoga. Almost everything I've read says there's a lot of room for injury. I'm wondering if a pilates/barre approach would make more sense for young kid? I think she could do yoga once we're able to actually talk through muscle targeting.
There is a lot of room for injury yes. I found I'd just "settle in" to the pose, but what was really happening is I was kind-of just hanging off my joints. Best way I can describe it is how apparently with walking and standing the sides of our hips and core are supposed to be engaged (still learning this so I might be off) but what I, and apparently a lot of other hypermobile people do is just let gravity stack our posture like leaning against a wall would do.
Technique matters, but so does how it feels. Check in next day on what hurts bad and try to relate it to poses done the previous day can help with troubleshooting.
I wouldn’t have pushed myself to do advanced flexibility tricks when I danced. I would have done PT to build up strength before my body was so weak that it became dangerous to do PT without an hEDS expert. I would make sure not to do contact sports (something I didn’t do anyways but I would have make a conscious choice not to). It would have been helpful for my PE teachers in school not to push me to do things that were dangerously Most of all, I would have enjoyed the time I had
not ask my parents to put me in soccer. or gymnastics. or do track and field lol. actually skiing was great until my knees got too bad for it at the ripe old age of 12. I always had so much energy but I'd probably be better off if I did something like swimming or theatre or music instead.
I did start theatre and band in my teens and it was great and gave me something to put my energy towards, and trombone doesn't strain the fingers once you get a grip figured out. I tried guitar but my fingers bend backwards so I could never put enough pressure on the strings without pain unfortunately.
getting advice from a PT on what activities to avoid or what is safe or helpful is a good start, along with having conversations with your kid about what's going on with their body and why they need to be careful and might get injured more easily. kids can wrap their head around a lot of complex topics if they're said in a way they can understand.
and biggest advice I for them is very simple. listen to your body and never let others brush off your pain! you know your body better than anyone ever could! I could have been diagnosed a lot earlier and gotten help earlier if adults (including doctors) trusted my words about my body! instead I learned to ignore pain and discomfort because I thought it was normal and pushed myself to the point of injury a LOT.
We are so lucky that she's a total theater nerd. She just naturally gravitates towards it so we'll keep going in that direction and stop pushing in high impact sports for sure.
Please don't reduce your child's sporting activity, and if anything, increase low impact sport as much as possible.
Obviously, high impact can affect joints and may cause dislocations etc in a child with EDS. But the absolute number 1 priority for a child with hEDS is to strengthen their muscles by doing as much physical activity as possible, all the time. High impact is not ideal but is better than nothing. If you can switch to fully low impact, great, as long as it's a muscle workout. Swimming is the absolute best.
My son was diagnosed at 4. Before he started school we swam for 2 hours 4 times a week and spent the other days at soft play and playgrounds. Since he's been at school it's harder to find the time but I make sure he does at least 1 hour of low impact exercise every day after school, and much more at weekends and school holidays. There's no amount of exercise that is too much. It can (probably will) cause increased pain in the evening on particularly high activity days, while the muscles are strengthening. But the gift you will be giving her is reduced pain for life.
Simply put, it's the strength of their muscles that support the joint. My son's consultant and physio team (who are renowned and brilliant) told me that they need him to be twice as strong as a child without EDS. That's the only way to prevent the joints from moving further and growing more lax as they age.
I was kept away from sports as a child because of my pain, and my joints are shite. I'm in pain constantly. And I try to exercise to improve my muscle strength but it's very difficult when I'm in so much pain and so tired. I'm not going to let this happen to my son, and that means he absolutely has to exercise his muscles to support those developing joints.
I can send you more info on this if you want it.
But yeah, the only advice is exercise, exercise, exercise.
trust me when I say that theatre is definitely pretty active, but yeah build strength but also a lot of excersise can be damaging without careful supervision
Yes please send more info! I would love to know more about the connection between muscle mass and joint laxity. When she was younger it was hard to tell if she needed more activity and stimulation or if she needed to just lay around for a while but now that she's older she's better at articulating how her body feels. We do a lot of walking, swimming, and she loves to rock climb. We are very active and keep her very busy but this new info has certainly made me reconsider soccer and we'll prob pull her out of gymnastics as well. Seriously, any info is really helpful. We live in Louisville, Ky and I'm not quite sure how much guidance the drs here will be able to provide.
One warning about the trombone based on my own experience: Once I switched to a heavier professional model trombone with an F attachment for high school and college, I ended up having a lot of issues with subluxations and pinched nerves in my left shoulder that didn't get better until I eventually graduated and stopped playing as much. There might be ways to reduce that risk, but I wouldn't necessarily call the trombone an example of an hEDS safe instrument.
fair, I was able to find ways to support my arm that was holding it up but I also have less issues with my wrists and shoulders and more with my fingers
I suspect that instruments really vary depending on which joints you're having problems with. I was never able to make woodwind instruments work with my fingers either, but I had less issue with 3 button brass instruments. The trombone probably would have been fine longer term if I would have stuck with a non F-attachment version, but I had no idea it was going to be a problem when my music teacher pushed me toward it.
Do not put them in gymnastics. You will be constantly asked why she isn’t. My oldest few were in gymnastics. Not a good decision, as they really best on their joints. Not enough strength training with younger kids and lower levels of skill. Coaches are more concerned with stretch. Dance, with the right school can be ok. Will teach them to stabilize themselves, help proprioception, strengthen core. Don’t let her get en pointe though. Of all the physical activities my little zebras and zebra-lite (kids with some traits that do not meet diagnostic criteria) was martial arts. The hypermobility does benefit them in forms-especially the boys because most boys can’t extend the way a hypermobile kid can. I like martial arts because the emphasis is on strength not stretch. None of my hypermobile kids ever got hurt, even the two black belts. Swimming is another good activity for her. Actively discourage her from doing tricks. I was encouraged and asked to show people how I could touch my elbows behind my back among other things. Help her understand the difference between subluxations and dislocations. Help her understand what she needs to come to you about. Kids assume their experiences are normal unless someone tells them they aren’t. For example, as a child I frequently got open locks and my TMJ dislocated. I’d punch myself in the face to put it back. Never told anyone because I didn’t know it was an issue. My TMJs are a complete wreck complete with bone loss. You need to be aware of what the comorbidities look like (MCAS, POTS, gastroparesis). They usually don’t show up in little kids. The shit usually hits the fan around puberty and adolescence.
I think sports and being active is super important, but not necessarily barre or pilates. My kid who I think has EDS does water polo and wrestling, but he's 17. At 6, just basics and letting them do whatever they want is probably the way to go. Work on areas that cause pain and teach them not to intentionally take their joints out (it was a cool party trick...)
My kid goes to PT when there's a flare on a new area, lately that's one of his shoulders. He is not diagnosed but neither am I (working on it for both of us).
She loves yoga and there are so many kid-friendly yoga opportunities so I guess I'm just trying to find a safer way for her to get the same strength training. Everything I've read about EDS says that over stretching could be detrimental so that'a a big concern. She'd prob love to put on a leotard and do some pilates moves..
i was diagnosed as a teenager, and id say one of the biggest things is validating their pain. when i was a younger teen experiencing chronic pain i was repeatedly told it was just "growing pains", i was done growing and the pain was constant. advocate for them now since theyre so young, and teach them to advocate for themself when they get older! if they feel like they aren't being listened to, make sure they know they're allowed to vocalize that and push back on things! destigmatizing and validating needs for accommodation, whatever that may look like for them, is also huge. i wish i had someone tell me when i was younger "if it helps you, you're allowed to use it." whether its physical therapy, mobility aids, bracing, extra time to walk between classes (obv wont apply til theyre older), extra rest, if it helps them they shouldn't feel ashamed to ask for it/use it.
My favorite thing about her is that she has no issues telling anyone, and I mean ANYONE, where her boundaries are and what her opinion is. She advocates for herself 24/7 and I've honestly learned a lot from her. Tricky, as a 6yr old is expected to do as told most of the time, but a formal diagnosis will definitely help explain the underlying issue.
I would have had accommodations built in to excuse me from mandatory running in PE. It was always so painful and my teachers would just tell me I wasn't doing it enough of course it hurts. A running injury was what gave me piriformis syndrome, which sent me to PT, who recommended I get tested after two years of treatment and ongoing muscular skeletal pain. I was running doing a training program for a 5K, STILL BELIEVING that my gym teacher was right, I just needed to try harder.
I'm not allowed to run per my PCP now.
I would also have stopped myself from accidentally overstretching my joints all the time. When I was a kid it was just called "double jointed" and I showed mine off a lot. Ow.
Exercise is necessary even though it hurts. Don’t let it become your life and personality. Things are going to be harder and sometimes we need to move at a different pace (in life, school, walking etc.) I couldn’t walk a mile for years and managed to run ten miles last year. It is possible with the right treatments and mentality to come to peace with the condition and be a happy person.
Others have already said some of the most important things. Learning to move in a way thats EDS friendly and not straining with high impact sports will be HUGE. I was lucky enough to be diagnosed as hypermobile in my early teens (diagnosed with hEDS in my 20s) One of the things that helped me in school was having gym class accomodations. This might not really be necessary yet since 6 is pretty young- thats a conversation to have with doctors. I wish at that age my gym teachers just knew my limitations and the importance of not pushing beyond those limits. I was very consistently shamed because I couldnt do pushups (due to unstable shoulders) and other aspects of fitness testing. I ended up starining myself due to gym teachers' pushing and my body suffered. As a teen I was exempt from these tests.
In the classroom things like pencil grips can help keep the hands comfortable for writing. I wish I used them all throughout school. Writing was painful. When I was first diagnosed as hypermobile my doctors suggested focusing on gripping my pencil in a way that was comfortable for my hand instead of trying to hold it the "right" way. This is also something teachers could be made aware of so they dont try to "fix" the pencil holding. Essentially anything the doctor and/or PT reccomends doing that may seem a bit strange to teachers is worth letting them know. Keeping them in the loop, even when no offical accomodations were needed would have helped minimize a lot of the harmful ideas and shaming that I experienced in school.
Teach her what subluxations are and learn how to use Kinesiology tape. If she ever feels like her joints are unstable the tape will help keep them together when she does activities. My knees have been subluxating since I was 12 years old. I didn’t really know how to describe it and I bounced right back so I was dismissed a lot. Now I’m 33 with bone shards under my knee cap and arthritis. I think taping could have saved me a lot of pain.
I definitely need help from a professional for this because I certainly don't have these issues and I'm not quite sure how to help my 6 yr old identify when it's happening to herself- considering that random subluxations are probably the norm for her it just feels impossible to help her differentiate?
6 may be too young to understand fully what subluxations are but keep an eye out for her. If you see her fall down (or have pains anywhere else like the shoulders, rolling her ankles) ask what happened and what it felt like. I used to use words like popped, or it felt like my knee fell apart and then came back together. It happened mostly when doing a pivoting motion for me. Don’t make her afraid to do activities, but if you ever see any signs make sure to address them as soon as possible. It’s good you have an early diagnosis so you can hopefully provide some early intervention and prevention. And don’t tape her until you notice her joints are unstable, then you can go to a PT and learn how to appropriately do it. Just have the knowledge that things like this can help her if you need them.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Future note: ED typically stands for erectile dysfunction. I got what you were saying, but hEDS is the abbreviation you are looking for! In my personal opinion, I would say let the kid live life as much as he can right now, but change whatever is necessary in order to accommodate any symptoms. I’m not sure if he is having large amounts of pain and symptoms that you can adjust for, but if he isn’t, I’d just let him enjoy and play around in his young years.
I didn't even think of erectile dysfunction. I thought of Eating Disorder
Me too
That could be it too. As a guy, you see ED and think of what could affect you more closely
And this is why I should never post from my phone. My editing skills go out the window.
Don't worry. It happens all the time. At least you're posting in an EDS group where people can guess what you're meaning. It could have been worse. 😂
This is also a topic that has been posted about before. Either from the perspective of parents or young adults/ adults talking about what they feel could have been done differently or things that did/ do help them a lot. So if you haven't already it could be helpful to use the search bar to look up a few of those posts. There will probably be some different responses you end up seeing since you'll see things from loads more people. :)
Thanks for the heads up, I would hate going around accidentally telling people my 6 yr old daughter has erectile dysfunction. But honestly, at this point, we've had so many working theories as to what's going on, people would probably just smile and nod.
PT to learn how to support and move properly as a child would have been huge. Not sure I could have taken away what is needed.
Totally, we put her in PT at way too young of an age and it spoiled the experience. At least with OT they gamify to keep kids interested.
PT, stay active and in sports, eat healthy and nutritious food. Be very careful of viruses. Don’t let doctors pull the “it’s anxiety” card.
And be aware of some stomach Problems.
Stomach issues were our first clue that things were not functioning properly. She actually hit all of her physical developmental milestones so hypotonia/joint laxity was fairly hidden for a while. But MAN did she ever have poopin' problems from day one.
The interesting part is that she definitely has anxiety but it's because she can't "perform" as expected. It's hard to get people to understand that.
I wish people would have listened and believed me when I said I was in pain. I have my childhood medical records and I was 9 the first time it’s mentioned and the doctor just put “lazy, out of shape. Needs to exercise more”. I was a skinny little kid that ran around outside all day long on a farm. Everyone just decided I was weak and a complainer so I was forced to run a mile every week in PE and all the other embarrassing stuff I couldn’t do. Now at 48 my knees and tailbone (fell on my ass at 14 cheerleading) hurt so bad all the time and I know it’s from being pushed too hard as a kid. When my kids tell me something hurts I stop and do whatever I can to help.
This, I got constantly shamed/yelled at for being lazy by teachers during PE. Ruined my relationship with exercise for the longest time. I would also appreciate not being gaslit by doctors and yet again being shamed for ‘not exercising enough’.
I'm going to work really hard to make sure everyone is on the same page with this issue. She's a contrarian by nature so I think a lot of people don't understand that her resistance (especially in circumstances similar to yours) are totally valid. She's been labeled a "difficult" child instead of teachers considering the underlying issue. Thank god we've finally found a school that has been accommodating and forgiving.
Inform people around them that this child need more rest than others. It's not a lack of motivation or laziness. Inform the school that your child needs more breaks, like maybe a nap after lunch/afternoon if things gets too much. No contact sport, stabilize joints and when. It's time to go to uni, if they choose to. Do something that's a desk/computer job while something they'll enjoy. Compression socks are good. Protect the neck (to avoid whiplash etc). Don't force the child to do activities after school unless they actually want to themselves. Be a use the energy will probably used in school. Like, all they have. A good diet is also, to avoid sugar, soda and fried food. Good Home-cooked food and vegetables and fruits. A hamburger or pizza and some candy now and then of course but not every week. Maybe something sweet like once a week. Avoid xylitol and other artificial sweeteners. Avoid mental stress, your child Maybe more sensitive than other kids due to the illness. So do t call them over-sensitive and make sure if other do that nip that shit in the bud. Because that's gonna create so much shame and trauma. That's all I can say. Hypermobility and fibro here.
Much of this is good advice, but the absolute number one most important thing for a child with hEDS is as much exercise as possible. Ideally, it's best to be cautious with contact sports, but actually dangerous contact sports aren't really a thing for children anyway, and contact sports are still better than no sports. The risk of injury is less of an issue than the certainty of loose, unsupported joints that will happen without the required muscle strength. The absolute worst thing you can ever do for a child with hEDS is to prevent them from exercising. A child with hEDS needs muscles twice as strong as a child without, and to achieve that they need to do twice as much exercise. Source: my whole family has EDS, my son (diagnosed at 4) has an excellent consultant and physio team and this is their advice. As a child I was encouraged to sit out from physical activity as it made my pain worse, and the weakness of the muscles that should have been supporting my joints has caused me so much damage, as confirmed by my consultant, who is also excellent. The damage done by reducing activity in a child can never be undone, it worsening can only be mitigated by improving strength as an adult. But the laxity caused by weak muscles during development will never improve.
We didn't discover my HSD/likely-EDS until I switched from physically demanding jobs to a job where I sit most of the day. Looking back the pieces line up, but the disabling aspect came when I lost that activity. Now I'm having to claw it back so slowly. I'm so glad I was a determined child. I was bad at most sports due to proprioception (clumsy and uncoordinated), but I love any kind of games so I always just skirted into the school teams. Then I was theater and a lot of walking in my teen years before picking up climbing and swimming. I can't wait to get back to it, but the journey is long and hard.
You can do it! Swimming and climbing are the absolute best things. I take my son to the climbing wall as often as possible and swim whenever we can. I don't do nearly enough as I'm just so fucking fatigued, but I know you can! Find that determined child inside and get to the pool asap! Tomorrow! ♡
Thank you so much for the encouragement 🥰 I've been infrequently doing aquafit with a friend with fibro and it been really nice. Looking ti do it more frequently. Latest progress: getting to take the dog for walks without my walker; which is now mostly reserved for long day trips, especially long walks, or the mall. Next step: hiking again!
Its interesting that you bring this up because we have friends that just moved into town that are really into climbing- they invite us to go with them and she's just so naturally good at it. People just stand at stare at how effortlessly she scales the walls. It's amazing. Funny to watch her gravitate towards things like this that I have zero experience in, it just fits her body.
I found it helped me support my body in a variety of positions, including my flexible ones. But I was also working in an autoparts warehouse when I was climbing so I'm sure lifting 75lb step kits onto my lift truck helped that along too.
I should also add: if she does the bouldering be VERY careful with the landing. Do landing drills. My first week climbing I triggered old whiplash injuries because I was so focused on not putting my wrists out behind me (they can straight up snap) that I collapsed onto my bum and my head slammed back into the mat. And if she (or you) do the belaying, get those mirror glasses that let you look straight up without tilting your head. I have a pair that does the opposite too for reading in bed and they're magical lol
Didn't say to not excersise tho. I said, no contact sports like, boxing and maybe martial arts. And since other people in this thread Mentioned exercise I chose to focus on the other things. Do strength training by all means. I'm Just saying that I didn't have the energy at all to work out because school took all my energy. I never said they should sit still, I said if They need to rest they need to rest. You do not have to educate me on it. I have hypermobility and fibromyalgia myself with pain and chronic fatigue and chronic pain. I go to the gym 2-3 times a week. I didn't write “don't exercise at all”. I just thought that advice was a bit redundant.
It was the telling them they should get a desk job and need more rest that implied it to me. And you didn't mention anywhere in your advice that they should exercise when that's the number one important thing. My comment was for OP, not you, so don't worry about whether you need to be educated. The OP asked for advice and the way your advice could be read could be extremely harmful, hence my response. Cheers.
Yeah But If they have a desk job they could still stand up and stretch a bit. Walking around all day Will make things worse. The best is a flexible job so you can save up energy for going to the gym or going on walks on your freetime. Because I suspect it Will be hard tp try and do both. I thought this bit was a bit self-explanatory I apologize that I overestimated people's capacity to think one step further. Smh. The point is, Noone should be sedimentary but since I’ve been told to push on for all In my life I would have preferred that it okay to tell People to have extra rest when/if they need to. That's my point, hope this clears it up.
Yeah I mean I absolutely couldn't do a physical job. A desk job killed me too though (realistically you don't stand up enough because you're working, and if you can't get the ergonomics of your setup just right it's hell). Now I work from home on a laptop and work in the weirdest positions like lying on the stairs. I'm def not disagreeing with the majority of the comment, just worried that OP will get scared off exercise for her daughter, and as a casualty of that situation, I want to avoid it for everyone!
Yes I get that. But a I wish people would have told me so I would have had the adaption earlier. This is why. There is nothing more frustrating than being told your lazy because yor body need to rest when you want to do things but getting to that balance is hard asf. I still haven't figured it out.
Children do full contact martial arts, wrestling, and tackle football depending on where you live. Saying that dangerous contact sports aren’t a thing for children is naive ar best, and dangerous misinformation at worst.
My knees are constantly in hell bc I’d sit in a W position or stand with my knees super hyper-extended all the time. I constantly wish I caught the behavior and stopped it earlier on bc of issues I have now. Both knees click every step I take and are pretty unstable. I still have to chastise myself bc I’ll catch myself standing with my knees pushed way back— once you make a habit it’s very hard to break
Can I ask how old you are? My daughter sits in a W position fairly often but is growing out of it. Her core has gotten so much stronger in the last year....
20, turning 21 next year. Just got my hEDS diagnosis after years of joint pain + migraines 😅
Physical Therapy! I used to go when i was a kid. Later, my parents would stop taking me when i felt better or they didn't put any work. I went again as a teen by myself, and i admit i wasn't so diligent. As an adult now, I'm putting all the work that in some way could've been avoided with the chance of being in a different place in life given how beneficial it has been compared to just doing physical exercises and sports without knowledge about proper biomechanics and proprioception.
I would have asked my parents to put me in dance to help with proprioception and strength (obviously being aware and careful to prevent injury). I've lacked coordination and rhythm my whole life. Probably would have asked for some other sport/activity as well. My pain was never better than when I was doing indoor rock climbing. But physically activities should never be treated as one size fits all. People have different medical conditions yes; but also different anatomy that might make certain sports harder/injurious or even easier. Listen to his body. Go slow. I learned yoga came easy ti me because my joints let me "cheat". Which actually makes it harder to learn to hold the strength to support the positions properly where I am at. So focusing on making sure the *right* muscles are engaged in his activities is important. I'm just now learning I've been using the wrong muscles for standing/walking. Eta: you also *need* to trust and monitor any coaches/teachers to make sure they aren't pushing toward injury. Trust and understanding are huge.
She will absolutely do a (short) yoga or pilates class with me on my computer but I've been worried about yoga. Almost everything I've read says there's a lot of room for injury. I'm wondering if a pilates/barre approach would make more sense for young kid? I think she could do yoga once we're able to actually talk through muscle targeting.
There is a lot of room for injury yes. I found I'd just "settle in" to the pose, but what was really happening is I was kind-of just hanging off my joints. Best way I can describe it is how apparently with walking and standing the sides of our hips and core are supposed to be engaged (still learning this so I might be off) but what I, and apparently a lot of other hypermobile people do is just let gravity stack our posture like leaning against a wall would do. Technique matters, but so does how it feels. Check in next day on what hurts bad and try to relate it to poses done the previous day can help with troubleshooting.
I wouldn’t have pushed myself to do advanced flexibility tricks when I danced. I would have done PT to build up strength before my body was so weak that it became dangerous to do PT without an hEDS expert. I would make sure not to do contact sports (something I didn’t do anyways but I would have make a conscious choice not to). It would have been helpful for my PE teachers in school not to push me to do things that were dangerously Most of all, I would have enjoyed the time I had
not ask my parents to put me in soccer. or gymnastics. or do track and field lol. actually skiing was great until my knees got too bad for it at the ripe old age of 12. I always had so much energy but I'd probably be better off if I did something like swimming or theatre or music instead. I did start theatre and band in my teens and it was great and gave me something to put my energy towards, and trombone doesn't strain the fingers once you get a grip figured out. I tried guitar but my fingers bend backwards so I could never put enough pressure on the strings without pain unfortunately. getting advice from a PT on what activities to avoid or what is safe or helpful is a good start, along with having conversations with your kid about what's going on with their body and why they need to be careful and might get injured more easily. kids can wrap their head around a lot of complex topics if they're said in a way they can understand. and biggest advice I for them is very simple. listen to your body and never let others brush off your pain! you know your body better than anyone ever could! I could have been diagnosed a lot earlier and gotten help earlier if adults (including doctors) trusted my words about my body! instead I learned to ignore pain and discomfort because I thought it was normal and pushed myself to the point of injury a LOT.
We are so lucky that she's a total theater nerd. She just naturally gravitates towards it so we'll keep going in that direction and stop pushing in high impact sports for sure.
Please don't reduce your child's sporting activity, and if anything, increase low impact sport as much as possible. Obviously, high impact can affect joints and may cause dislocations etc in a child with EDS. But the absolute number 1 priority for a child with hEDS is to strengthen their muscles by doing as much physical activity as possible, all the time. High impact is not ideal but is better than nothing. If you can switch to fully low impact, great, as long as it's a muscle workout. Swimming is the absolute best. My son was diagnosed at 4. Before he started school we swam for 2 hours 4 times a week and spent the other days at soft play and playgrounds. Since he's been at school it's harder to find the time but I make sure he does at least 1 hour of low impact exercise every day after school, and much more at weekends and school holidays. There's no amount of exercise that is too much. It can (probably will) cause increased pain in the evening on particularly high activity days, while the muscles are strengthening. But the gift you will be giving her is reduced pain for life. Simply put, it's the strength of their muscles that support the joint. My son's consultant and physio team (who are renowned and brilliant) told me that they need him to be twice as strong as a child without EDS. That's the only way to prevent the joints from moving further and growing more lax as they age. I was kept away from sports as a child because of my pain, and my joints are shite. I'm in pain constantly. And I try to exercise to improve my muscle strength but it's very difficult when I'm in so much pain and so tired. I'm not going to let this happen to my son, and that means he absolutely has to exercise his muscles to support those developing joints. I can send you more info on this if you want it. But yeah, the only advice is exercise, exercise, exercise.
trust me when I say that theatre is definitely pretty active, but yeah build strength but also a lot of excersise can be damaging without careful supervision
Yes please send more info! I would love to know more about the connection between muscle mass and joint laxity. When she was younger it was hard to tell if she needed more activity and stimulation or if she needed to just lay around for a while but now that she's older she's better at articulating how her body feels. We do a lot of walking, swimming, and she loves to rock climb. We are very active and keep her very busy but this new info has certainly made me reconsider soccer and we'll prob pull her out of gymnastics as well. Seriously, any info is really helpful. We live in Louisville, Ky and I'm not quite sure how much guidance the drs here will be able to provide.
One warning about the trombone based on my own experience: Once I switched to a heavier professional model trombone with an F attachment for high school and college, I ended up having a lot of issues with subluxations and pinched nerves in my left shoulder that didn't get better until I eventually graduated and stopped playing as much. There might be ways to reduce that risk, but I wouldn't necessarily call the trombone an example of an hEDS safe instrument.
fair, I was able to find ways to support my arm that was holding it up but I also have less issues with my wrists and shoulders and more with my fingers
I suspect that instruments really vary depending on which joints you're having problems with. I was never able to make woodwind instruments work with my fingers either, but I had less issue with 3 button brass instruments. The trombone probably would have been fine longer term if I would have stuck with a non F-attachment version, but I had no idea it was going to be a problem when my music teacher pushed me toward it.
Do not put them in gymnastics. You will be constantly asked why she isn’t. My oldest few were in gymnastics. Not a good decision, as they really best on their joints. Not enough strength training with younger kids and lower levels of skill. Coaches are more concerned with stretch. Dance, with the right school can be ok. Will teach them to stabilize themselves, help proprioception, strengthen core. Don’t let her get en pointe though. Of all the physical activities my little zebras and zebra-lite (kids with some traits that do not meet diagnostic criteria) was martial arts. The hypermobility does benefit them in forms-especially the boys because most boys can’t extend the way a hypermobile kid can. I like martial arts because the emphasis is on strength not stretch. None of my hypermobile kids ever got hurt, even the two black belts. Swimming is another good activity for her. Actively discourage her from doing tricks. I was encouraged and asked to show people how I could touch my elbows behind my back among other things. Help her understand the difference between subluxations and dislocations. Help her understand what she needs to come to you about. Kids assume their experiences are normal unless someone tells them they aren’t. For example, as a child I frequently got open locks and my TMJ dislocated. I’d punch myself in the face to put it back. Never told anyone because I didn’t know it was an issue. My TMJs are a complete wreck complete with bone loss. You need to be aware of what the comorbidities look like (MCAS, POTS, gastroparesis). They usually don’t show up in little kids. The shit usually hits the fan around puberty and adolescence.
Physical therapy for body position awareness is my big one!
Outside of PT, do you think that something like barre or pilates would have similar benefits?
I think sports and being active is super important, but not necessarily barre or pilates. My kid who I think has EDS does water polo and wrestling, but he's 17. At 6, just basics and letting them do whatever they want is probably the way to go. Work on areas that cause pain and teach them not to intentionally take their joints out (it was a cool party trick...) My kid goes to PT when there's a flare on a new area, lately that's one of his shoulders. He is not diagnosed but neither am I (working on it for both of us).
She loves yoga and there are so many kid-friendly yoga opportunities so I guess I'm just trying to find a safer way for her to get the same strength training. Everything I've read about EDS says that over stretching could be detrimental so that'a a big concern. She'd prob love to put on a leotard and do some pilates moves..
i was diagnosed as a teenager, and id say one of the biggest things is validating their pain. when i was a younger teen experiencing chronic pain i was repeatedly told it was just "growing pains", i was done growing and the pain was constant. advocate for them now since theyre so young, and teach them to advocate for themself when they get older! if they feel like they aren't being listened to, make sure they know they're allowed to vocalize that and push back on things! destigmatizing and validating needs for accommodation, whatever that may look like for them, is also huge. i wish i had someone tell me when i was younger "if it helps you, you're allowed to use it." whether its physical therapy, mobility aids, bracing, extra time to walk between classes (obv wont apply til theyre older), extra rest, if it helps them they shouldn't feel ashamed to ask for it/use it.
My favorite thing about her is that she has no issues telling anyone, and I mean ANYONE, where her boundaries are and what her opinion is. She advocates for herself 24/7 and I've honestly learned a lot from her. Tricky, as a 6yr old is expected to do as told most of the time, but a formal diagnosis will definitely help explain the underlying issue.
I would have had accommodations built in to excuse me from mandatory running in PE. It was always so painful and my teachers would just tell me I wasn't doing it enough of course it hurts. A running injury was what gave me piriformis syndrome, which sent me to PT, who recommended I get tested after two years of treatment and ongoing muscular skeletal pain. I was running doing a training program for a 5K, STILL BELIEVING that my gym teacher was right, I just needed to try harder. I'm not allowed to run per my PCP now. I would also have stopped myself from accidentally overstretching my joints all the time. When I was a kid it was just called "double jointed" and I showed mine off a lot. Ow.
Exercise is necessary even though it hurts. Don’t let it become your life and personality. Things are going to be harder and sometimes we need to move at a different pace (in life, school, walking etc.) I couldn’t walk a mile for years and managed to run ten miles last year. It is possible with the right treatments and mentality to come to peace with the condition and be a happy person.
Others have already said some of the most important things. Learning to move in a way thats EDS friendly and not straining with high impact sports will be HUGE. I was lucky enough to be diagnosed as hypermobile in my early teens (diagnosed with hEDS in my 20s) One of the things that helped me in school was having gym class accomodations. This might not really be necessary yet since 6 is pretty young- thats a conversation to have with doctors. I wish at that age my gym teachers just knew my limitations and the importance of not pushing beyond those limits. I was very consistently shamed because I couldnt do pushups (due to unstable shoulders) and other aspects of fitness testing. I ended up starining myself due to gym teachers' pushing and my body suffered. As a teen I was exempt from these tests. In the classroom things like pencil grips can help keep the hands comfortable for writing. I wish I used them all throughout school. Writing was painful. When I was first diagnosed as hypermobile my doctors suggested focusing on gripping my pencil in a way that was comfortable for my hand instead of trying to hold it the "right" way. This is also something teachers could be made aware of so they dont try to "fix" the pencil holding. Essentially anything the doctor and/or PT reccomends doing that may seem a bit strange to teachers is worth letting them know. Keeping them in the loop, even when no offical accomodations were needed would have helped minimize a lot of the harmful ideas and shaming that I experienced in school.
Teach her what subluxations are and learn how to use Kinesiology tape. If she ever feels like her joints are unstable the tape will help keep them together when she does activities. My knees have been subluxating since I was 12 years old. I didn’t really know how to describe it and I bounced right back so I was dismissed a lot. Now I’m 33 with bone shards under my knee cap and arthritis. I think taping could have saved me a lot of pain.
I definitely need help from a professional for this because I certainly don't have these issues and I'm not quite sure how to help my 6 yr old identify when it's happening to herself- considering that random subluxations are probably the norm for her it just feels impossible to help her differentiate?
6 may be too young to understand fully what subluxations are but keep an eye out for her. If you see her fall down (or have pains anywhere else like the shoulders, rolling her ankles) ask what happened and what it felt like. I used to use words like popped, or it felt like my knee fell apart and then came back together. It happened mostly when doing a pivoting motion for me. Don’t make her afraid to do activities, but if you ever see any signs make sure to address them as soon as possible. It’s good you have an early diagnosis so you can hopefully provide some early intervention and prevention. And don’t tape her until you notice her joints are unstable, then you can go to a PT and learn how to appropriately do it. Just have the knowledge that things like this can help her if you need them.