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ReluctantGymMom

Proud Parent
May 11, 2020
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We currently have a L8 on our team with Ehlers-Danlos (Hypermobile Type). She has gotten really good over the years at applying KT Tape ... and she wears braces on both knees and both ankles. This will be her 2nd year at L8. She is a senior this year ... and she will be the second gymnast on our team to compete through senior year with Hypermobile EDS. The other one graduated in 2019.

Based on what I have seen, it is possible ... but she may have to manage her expectations (lower hours, fewer hard landings, more PT).
That's encouraging to hear - I worry that she's got a lonnnng way to go until she's a senior. Things go much better when she's diligent about PT, but obviously the idea seems stupid to a 10 year old when nothing hurts. And like more work when things hurt.

I think I need to talk to her coach about reducing her hard landings, I really hate to do so, I don't want it looking like I'm asking for special treatment for her :( (I know logically it's not special treatment, but yknow how these things look)
 
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LJL07

Proud Parent
Jan 27, 2014
1,856
We currently have a L8 on our team with Ehlers-Danlos (Hypermobile Type). She has gotten really good over the years at applying KT Tape ... and she wears braces on both knees and both ankles. This will be her 2nd year at L8. She is a senior this year ... and she will be the second gymnast on our team to compete through senior year with Hypermobile EDS. The other one graduated in 2019.

Based on what I have seen, it is possible ... but she may have to manage her expectations (lower hours, fewer hard landings, more PT).
Yep. Ehlers-Danlos is not quite what my daughter has, although there are some similarities. My daughter's issues started to get pretty bad around age 10-11 (same as OP's daughter). She actually progressed pretty well through the levels up until level 8. She sat out her whole level 8 season (ages 10/11) due to the undiagnosed JRA. We then got her going in sixth grade again with meds working well for level 8, and she managed to qualify for regionals. First year of level 9 was COVID, so that season was kind of a wash. When they came back to training from COVID, she had a bad JRA flare. I COMPLETELY sympathize with all of your ortho visits. We were at the doctor and at PT constantly. It was always a pulled ligament or tendon and sore joints. One thing you need is an understanding coach!! Our coach at the time was really old school and did not understand that she needed specific strength training to prevent more injuries and a modified work out plan. Many of her "injuries" were due to too many reps. He also had her sitting out too much and that was making it worse because she was losing strength from not conditioning properly.

We are very fortunate in that we were able to move to a closer gym that allowed us more time for PT and strength training outside of the gym. These coaches were also willing to talk to medical providers and PT. She competed level 9. It was kind of a meh season, but all things considered, it wasn't terrible. We are STILL trying to get her medications ironed out for the JRA, but what has kept her going (knock on wood) is actually doing less hours/pounding, keeping up with PT, and doing the strength training. Honestly she is not going to make a fabulous D1 college team (we lost too much time and have very limited resources here), but I think she will get to level 10. No doubt about it, this has been super frustrating and exhausting, but if she loves it, it is possible to keep going.

ETA: I also want to add that if you determine that there is a medical cause to the injuries like in my daughter's case, you pretty much have to ask for special treatment. That is not the same thing as demanding privates because she is behind on a skill "just because." If that makes sense!
 

Tammie

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Jul 22, 2022
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Yep I’m handing her coach her PT papers and She’ll stay in the gym extra while she finishes ankles, knees and wrists excercises.

Side note: why is your daughter being kept in level 4 or 6 with level 9 skills???
Sorry for the late reply, it was a warm weekend here in SoCal-when that happens, my brain turns to mush(I'm 16yrs in with MS)-especially on weekends when the kids are in/out all day opening the door-grrr ;-)

First off, she has SOME L9 skills, solid L7 skills, ok L8 skills(she could probably be ok to compete 8 this spring...she would not be able to make podium as L8 this fall).

We actually had a strange gym journey, my kiddo had 2yrs off(fall 2018/2019/20-we moved and had no gym home when COVID struck, so no zoom workouts or anything of that nature-heck, we were stuck in temporary housing so she didnt even have anything to join them if she did!!), yet when she did go back, Nov 2020, we were accepted by our #1 choice in elite gyms(which was our reason for moving here-but we figured it would happen a few years in the future) :) the caveat being that they required she restart her levels(&no skipping allowed in compulsory)-according to her HC, there are important foundational skills taught in compulsory that gymnasts carry forever. Supposedly HC can spot a gymnast with poor compulsory training a mile away-even when they become elite gymnasts-who knows, but it's her gym ;-)

It likely didn't help that 1)my kiddo is mildly autistic, she spent her first month staring at the floor, not talking. They would ask if she could do something and she would just stare at the floor. Once she felt more comfortable, she still didn't talk much, but was at least willing to show them her gymnastics(now she's a social butterfly in her gym-insofar as an autistic almost 11yr old can be, anyway-truly miles beyond my wildest dreams for her) And 2)her skills were a hot mess!! Truly, a hot mess!! She lost her side split, but retained her middle split. Who does THAT?? Yet when she didn't have her side splits, they never thought to ask about middle splits-lol-her coaches mouth literally dropped the day she did them about 5/6wks in.

However, needless to say, once the skills started coming back, they were flooding back(&pretty sure she had some they didnt know about because they didnt think to ask-ya know, cuz usually if you cant do 'A,' you surely cannot do 'D' and for sure not 'H'...but she could). Yet the HC still says no skipping, there are things she wants to make sure she has solidly...so they made a deal with my kiddo, no quitting out of boredom-still give L4 your all, and they would allow her to keep advancing her skills and allow her the extended workout of the optionals-and about 6mos ago they extended the offer of "big privates"(she had privates from day one to help regain skills, but obviously not with HCs-those tend to be reserved for upper optional girls). We are at a small, boutique gym, so they are able to do this with her.

From my understanding they never expected the skills to come back so quickly, they never expected her to gain new skills so quickly, etc(i blame the autism for that too)....I've heard they may have started her back higher had they known-oh well, this is where we are now.

There are definite differences I see this time around compared to last time around. Her gymnastics are crisper, more controlled, I don't exactly know how to explain it, but I definitely see some of the foundational things they felt she was lacking coming from a "lesser" program. Yet how much of that is because she trains 28-32hrs/wk and conditions with the upper optionals and how much is solid compulsory skills with these coaches that she didnt have before? I don't know.

My oldest daughter(21) compares it to the way Konnor McClain is now vs last year(the crisp movements, the way she moves with purpose now, etc), both had good gymnastics, one is just prettier/nicer to watch. One is also more likely to make an olympic team than the other.

We ARE allowed to skip optional levels here(compete one & move on), so there is talk of doing that. One HC wants 4/6 this year, 7/8-possibly 9, next(thinks 4 to 7 in one year would be too much change for my autistic kiddo). The other HC wants 4/6/7 this year, 8/9 next. Who knows what will happen-either way keeps me on my toes(actually, while I say that, I don't care about her level, so it doesn't matter to me!! She's enjoying herself, back in her happy place, and that is all that matters!!)

My understanding is that they plan on having her do elite qualifiers in 2-3yrs(its all too fast for me!!), with hopes for being ready for 2028 Olympics(these coaches have trained elite athletes and olympians-its not just something they say to all the parents).

I joined CB when things started moving faster than I understood-lol. While this is ultimately what I wanted, because my kiddo wanted it, it also had my head spinning!!!

Good luck with your kiddo in PT!! I hope they are able to help your daughter have a magnificent comeback-even if she has a minor setback!!
 

Tammie

Member
Jul 22, 2022
90
44
I don't know if this is helpful but my daughter has JRA and a bit of hypermobility as well. It has been a STRUGGLE. She just keeps on going. She is really hoping to do level 10 this season (she's 15.). We ended up hiring a trainer who does individualized conditioning to strengthen glutes, hamstrings, ankles, etc. She also does very regular PT. We have modified her training schedule as well--I would say she trains less hours than an average level 10 but due to the joint issues and hypermobility, training efficiently has been really important and making sure she is getting right conditioning. I sympathize. She has missed two whole seasons due to these issues.

ETA: My daughter also had weakness in her hips, and apparently it affected the whole muscle chain going down her legs. So the trainer has been working specifically on those issues. She was actually casted for months on end before we knew she had JRA, and her whole left side atrophied pretty bad. You might have to get extra outside of the gym, but don't give up if she loves it!

Yes, I have also never heard of a level 4 jumping up to level 9. That's quite a jump. LOL!
I am so so sorry to hear that your daughter has JRA!! I cannot even imagine the pain she is in daily!!

I had a friend in school who had JRA, needed a replacement knee??(something, it's been 30yrs, don't quote me)at 12/13/14.

My ex-sil also had JRA, had a hip replacement at 14/15.

I've also met MANY older adults who have suffered years with JRA(I have MS that was misdiagnosed as lupus for some years-waiting rooms of rheumatologists are happening places ;-)), I don't remember a single one that could have participated in any level of gymnastics, let alone L10-even if they wanted it, their bodies were too 'crippled'-for lack of a better term. Many had various joint replacements, disfigured joints, atrophy, etc.

I wonder if the gymnastics may actually be good for your daughter/her condition?? Despite all the heartache and misery and extra steps required, maybe it is good???

Just a thought, something that might help keep you, your daughter, your family, going through the tough days that I am sure you will continue to face ahead.

P.S. as an aside, I explained my daughters entire situation in detail, she will not be going to L9, she has SOME L9 skills as a L4, there IS a difference-lol.
 

Tammie

Member
Jul 22, 2022
90
44
A bigger issue for her is just rolling her ankles while walking - we go to the dr quickly to check on any injuries, she has mild hemophilia so the goal is to always fix any problem before there is any chance of needing surgery (because that would be a big issue). I’m far more cautious than most people!

I’ll ask about testing her for a connective tissue disorder, but the ortho didn’t seem overly concerned. He was clear that she’d be fighting an uphill battle to keep strengthening the loose ligaments though
Poor baby!! I too was an ankle roller while walking-about the same age, I no longer have that issue, but did my entire childhood(my mom thought PT was a waste of time/money, she used to tell me she had PT for me, run around in the backyard ;-)). It's an awful way to live life!! I sprained my ankle AT LEAST once a year from ~9/10 until ~21/22 when I finally paid for my own PT. I feel for your daughter, and I am glad she is getting the therapy she needs early on!!

It truly sounds as if not enough time has been spent conditioning in general from the start(especially now with a wrist too)!! I get it, at younger ages it's much easier to spend most of your time doing the fun stuff-for the coaches too-if they "worked out"/conditioned more hours than they flipped, not as many would want to stay, but extra conditioning is going to be key for your daughter if she wants to move forward-forever and always!!

Is it possible that because your daughter is hypermobile, some of the things they do to stretch/tone certain muscle groups isn't working for her??(like maybe if they sit in straddle & reach forward, your daughter can go face to the floor without any stretching/toning?) Because maybe if your daughter doesn't realize how it's supposed to feel(I mean, how would she know?)and the coaches don't realize that she is not being stretched and toned-because any other person in that pretzel position would be stretching, so due to ignorance of facts, she is basically not conditioning/stretching properly?-then putting too much strain on those areas and that is what is causing at least part of the problem??....I hope that made sense, I can visualize it, but I'm not sure how exactly to communicate it. I remember my kiddo having different warmups due to hypermobility, but only after they realized that she wasn't being stretched-once they showed her how it was supposed to feel & she told them it didn't feel that way during warmups-lol.

Another thing that is going to sound wholly stupid, has anyone every felt her muscles while she does things? Both in gym things and in her conditioning? To make sure she is using the 'right' muscles when she does certain gym skills? This was another thing they did with DD due to the hypermobility-i guess HM kids have a tendency to use the wrong muscles when doing certain things, so I remember her being on the gym floor, on a beam, with the coach putting his hands on her leg, asking her to lift it, bend it, relevé raise, etc then telling her she wasn't using the right muscles-show her which ones. Same with climbing the rope and arm muscles...it was such an odd, odd thing to watch-and honestly it took a minute for my kid to 'get it'

Both above things happened ~5yrs old...so I can imagine if, like my kiddo, your daughter has been either using the wrong muscles-or isn't stretching properly because she doesn't know what she doesn't know, then that is 5/6yrs for all of this to build up....maybe?

Do you know about how many hours per week they spend conditioning?(my kiddo started with pre-team it was ~3/4hrs/wk(when the non-hypermobile kids were doing, at most, 30-60MIN/wk...my kiddo literally had conditioning privates back then-i felt like the red-headed step child-other kids had "fun" privates-mine was climbing the rope & doing hip circles/v-ups for an hour-lol), she now does ~10-12hrs/wk at gym, plus ~2hrs/wk at home specific to her and her issues).

Maybe she simply isn't conditioning enough for being hypermobile?? Obviously through no fault of her own.

The things I have seen my daughter doing for ankles at home is writing the alphabet in the air with her toes(one foot at a time-like while watching tv)and relevé raises on beam(on floor is ok in a pinch, but at home we often use the curb since we don't have a home beam). I know there is more during practice, but that is what I see as her 'homework' on offdays-I will ask her about hip, knee, and ankle on Wednesday(offday)...not sure if it will be any different than PT/your gym, but maybe there will be something in there that can offer variety, additional support, or maybe even fun(although our current gym is more business than fun when it comes to conditioning-so maybe not ;-))

In any case, I truly hope you can get to the bottom of it and your daughter is able to fully enjoy her childhood-without ankle rolling-regardless of what sport she chooses(if any).

Btw-is anyone else in your family hypermobile or have any of the same issues or is your DD the first? For me, it came from my grandfather(who was born in 1899 KY-totally different time/place)-I still remember him sitting with feet behind his head at 92/93yrs old, so my parents had no clue what to do with me, only saw the blessing side of it, not the accompanying curse!!
 

Tammie

Member
Jul 22, 2022
90
44
Oh goodness, all that long-windedness, i forgot a point...kinesiologist, that is another specialist you may want to see(unless you have PT that is trained, or can switch to one that is)

Kinesiology is what they were doing when they were feeling DDs knees/arms/legs/hips/shoulders to see if she was moving the right muscles(they also placed tape on certain parts of her body & I remember her getting a treat if the tape was still in place after xyz skills-the tape also serves as a reminder to move these muscles vs those)

Sorry, 4:50am here, I could not for the life of me remember the name of the specialty, but PT or coach can do it if they're trained(old coach was a TOPs selection guy-he knew about proper conditioning & stretching-lol)-if neither work for you, you can seek it out on your own.

Just another potential suggestion
 

Tammie

Member
Jul 22, 2022
90
44
Ok, I asked both my daughter & her conditioning coach.

My daughter said to put top of foot on something behind you, with straight legs(start with something short and keep going up until you feel stretch-they can get really high), then lean back(like as in a back walkover). Switch legs.

And lay on the floor in bridge position, do a "flat bridge"(become a table), then lift alternating legs in the air one at a time(DD said kick out so leg is straight, then raise as high in the air as you can-leave it there as long as you can & still able to bring it back slowly).

The conditioning coach said she would recommend the bridge kicks(daughters 2nd suggestion) & 'Bulgarian squats' for a weak "lower trifecta." Same as the hip stretches in #1, but instead of leaning/bending backwards, you do squats with the leg remaining on the floor. Switch legs, repeat.

Not sure if that helps, or if you are getting the same info from others(PT/coach), but I know other perspectives sometimes help. I know it doesn't hurt :)

Best of luck to DD, I hope she is able to recover, quit falling when walking, and continue in whatever sport or activity makes her happy!!

I truly do feel badly for her, most sports injuries I cannot relate to, I'm clueless, the rolling ankles when walking?? I can 1000% relate & I feel for her!!
 
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