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My 6yr old just diagnosed with Hypermobility-what to expect?

Hypermobility Forum for people with Marfan, EDS: TREATMENTS: My 6yr old just diagnosed with Hypermobility-what to expect?
Top of pagePrevious messageNext messageBottom of pageLink to this message   By La Tonya on Saturday, June 21, 2003 - 09:53 pm:

Hello My six year old daughter was just diagnosed with hypermobility. She has painful ankles and the doctor says she has little sprains on a daily basis. The only thing he said it to get physical therapy for strengthening. He said gymnastics is good for her and is letting her play soccer but said she is at increased risk for injury. Can you tell me what to expect from all of this and what her future may hold?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Sunday, June 22, 2003 - 04:50 pm:

La Tonya,

My advice would be to not worry so much at this point, because she is so young. She will need to learn her own boundaries for her own body in time. Who knows, she may even grow out of her laxity as many children do. Or, she could grow up, have laxity and have no pain whatsoever. This is in no way a life sentance. If there is a serious injury, find a good doctor who does prolotherapy, and keep her far, far away from anybody who wants to do surgery on her joints. Best wishes to you!

Greg

Top of pagePrevious messageNext messageBottom of pageLink to this message   By hamfist on Tuesday, June 24, 2003 - 01:59 am:

La Tonya

Joints are created whenever two adjacent bones meet. They have fibrous bands of connective tissue called ligaments that stabilize the joint. Connective tissues also form the tendons that join the bones to the muscles. Ligaments and tendons usually restrict the movement of the joint, but in some people, these normally restrictive tissues can be quite flexible and allow a wider range of motion than is usual. Such a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems and without pain.

But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems.

So, the fact that she has hyper mobile joints at this stage means that you need to take care with her. I would go totally against any form of exercise that is jarring on the joints so harsh sports including gymnastics and soccer are most unwise. As well, her sprains are likely caused because of hyper mobile joints and you could well consider some form of support footwear to allow her to participate without getting hurt.

Building up muscle tone in a hyper mobile is so important but this should be achieved by resistance exercises and nothing harsh.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By La Tonya on Thursday, June 26, 2003 - 09:04 pm:

What types of ankle support do people with these problems use?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Myke on Friday, June 27, 2003 - 04:47 am:

You might want to see the Bracing sub-threads. I personally use the Breg Ultra Ankle brace and I have custom insoles in my shoes. I used to have the 'Active Ankle', but the Breg is 100X better.


And at this hour, I cannot grammar. ;)

Top of pagePrevious messageNext messageBottom of pageLink to this message   By carolyn on Monday, December 08, 2003 - 10:00 pm:

MY SIX YEAR OLD ALSO HAS LOOSE JOINTS.
She is using orthotics. They have helped but she is still in a lot of pain.
I am going to look into physical therapy.
corkie

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Idance 4Him on Sunday, December 14, 2003 - 07:11 pm:

La Tonya!
Hi! My Daughter was diagnosed early also! (She's a teen now) Lauren had problems with her ankles all of the time. She would twist them at least 3 times a week and would have a few bad sprains, usually about 1 or 2 a month. Lauren's ankles collaped on her sometimes as many as 7 times a day but that soon ended (as well as the sprains) when she took up Irish Dancing. Irish dancing does put alot of strain on the joints but has stabilized her ankles so that her ankles only collapse once in every 5 weeks! (Yippie!)Lauren's hypermobility is present in all of the main joints now but doen't cause any major discomfort. (with the exception of dislocations weekly in both shoulders.)
Soccer is an outstanding sport to continue in if no problems are occuring with your daughter's ankles!

Happy Holidays!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By sara wood on Sunday, January 11, 2004 - 12:20 pm:

i did gymnastics at heathrow gym when i was aged approx 6-10. i retrospect, whilst exercise is good, gymnastics is relatively uncontrolled and potentially not the best activity for anyone with hypermobility to do.
but what do i know, it may not have done me any harm. i am not an expert!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Mrs Debra Wood on Wednesday, February 18, 2004 - 01:58 pm:

Hello, My daughter has just been diagnosed with joint hypermobility, she has pains in her legs. But I just wanted to know if there is a conntection with weakness of the bladder and her condition, any replies would be helpfull, as I am findig it difficult to find information.
Thankyou

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Elaine Thomson on Thursday, March 04, 2004 - 02:14 am:

MY daughter was in hospital last year because she couldn't straighten her legs, I was told she has hyper joints and she was released 5 days later. Since then she has had frequent pain in her knees and cant stand and walk she was refered to the hospital again and I was told there is nothing they can do just encourage her to get up and she will grow out of it. I feel very lost and have no other information on this and what to do.
Please help

elaine thomson

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Greg on Thursday, March 04, 2004 - 03:30 pm:

Debra,

I have not heard of a connection between Hypermobility and bladder problems.

Elaine,

What country are you located in?

Greg

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Barbara on Thursday, March 04, 2004 - 03:40 pm:

Debra,

There is a study on urinary incontinence and pelvic organ prolapse in women with Marfan Syndrome and Ehlers Danlos Syndrome. Hypermobility is a symptom of both EDS and Marfans.

-Barb

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10819815&dopt=Abstract

1: Am J Obstet Gynecol. 2000 May;182(5):1021-3. Related Articles, Links

Abstract: Urinary incontinence and pelvic organ prolapse in women with Marfan or Ehlers Danlos syndrome.

Carley ME, Schaffer J.

Department of Obstetrics and Gynecology, University of Texas Southwestern Medical Center, USA.

OBJECTIVE: This study was undertaken to determine the prevalence of urinary incontinence and pelvic organ prolapse in a cohort of women with either Marfan syndrome or Ehlers-Danlos syndrome.Study Design: Female patients with either Marfan syndrome or Ehlers-Danlos syndrome were identified through a medical records search at two urban hospitals. Each patient's medical record was reviewed, and the history of pelvic organ prolapse and urinary incontinence was obtained through telephone interview. RESULTS: Twelve women with Marfan syndrome were identified. Among these women 5 (42%) reported a history of urinary incontinence and 4 (33%) reported a history of pelvic organ prolapse. Eight women with Ehlers-Danlos syndrome were identified. Among these women 4 (50%) reported a history of urinary incontinence and 6 (75%) reported a history of pelvic organ prolapse. CONCLUSIONS: Women with Marfan or Ehlers-Danlos syndrome have high rates of urinary incontinence and pelvic organ prolapse. This finding supports the hypothesized etiologic role of connective tissue disorders as a factor in the pathogenesis of these conditions.

PMID: 10819815 [PubMed - indexed for MEDLINE]

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Chris Anderson on Thursday, March 11, 2004 - 08:07 am:

My daughter, 8 years old, was diagnosed with hypermobile joints when she was 2 1/2 years old. She has recurring pains, but mostly she is fine. I attribute much of this to her swimming though. Swimming is low stress on her body and very good for strengthening. Her orthopedist essentially prohibited her from gymnastics and recommended against soccer as well.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Hamfist on Thursday, March 11, 2004 - 08:30 am:

Hello Chris,
Yes, swimming is great but watch the shoulder action as harsh movement can lead to dislocation. And Gymnastics, soccer, aerobics and any sport/exercise that is hard on joints are not for your daughter. Depending on the degree of hypermobility in her joints she may well need ankle support footwear on some occasions.
Maintaining muscle tone is a very definite requirement but this should only be achieved by resistance exercise.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Kim on Thursday, March 11, 2004 - 01:43 pm:

At last a forum for hypermobility that people are actually reponding to! My daughter was diagnosed a year ago and most of her pain occurs in her knees, ocassionally in her elbows, wrists, and ankles. We are going to be seeking help through physiotherapy. Anyone have any advice? Also we are noticing that our daughter moves very stiffly. Does anyone else do this or have a child who seems to be stiff?

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Helen on Sunday, April 11, 2004 - 02:01 am:

Hello Kim,
I would try Swimming in a Warm pool, (Hydrotherapy pool if Poss), this is weightless and very soothing!

Top of pagePrevious messageNext messageBottom of pageLink to this message   By Rosemary Small on Sunday, April 18, 2004 - 05:40 pm:

Swimming vertically using hydrofit exercises in the deep end of the pool is safe and effective for muscle toning. This type of water exercise is all about resistance. Controlled movements can be used to strengthen almost every muscle group. I have been doing this "swimming" for three and a half years with good results. I started out with a swim gear waist belt. I now use two sets of Aqua gear bouyancy cuffs on my legs, and some Aqua jogger cuffs on my wrists. Try to find a pool that is aleast 89 to 90 degrees. YOu are much less likely to cramp and can exercise for a longer period of time. I still dislocate things, but I repair quicker now. At least my heart gets a good workout three hours a week. EDS is with us forever, but I am willing to work for what control I can get. Please start out easy and give yourself a few years. I also do a modified version of Pilates.

Top of pagePrevious messageNext messageBottom of pageLink to this message   By misshuu on Saturday, September 18, 2004 - 10:45 pm:

Hello all,

After frustrated with my hypermobility tonight, I googled the subject and found this forum. I figured I'd offer my 2 cents to young kids involved in sports from my experiences.

I first started having problems when playing soccer around 7 years old with frequently twisted ankles. It made me stop playing soccer, but I wasn't wearing ankle braces then.

I went on to swim, which worked out for me for about 10 years. However, once swimmers come around high school age, yardage increases which is not good for the shoulders and rotator cuffs. Swimming, however, is great exersize for people with hypermobility as it involves little harsh back and forth motion. I was able to continue swimming for awhile working with a doctor that emphasized perfect technique. Technique is essential to minimize shoulder wear and tear. I also recommend cutting down yardage to a range that involves no sharp pain.

I've had two ankle surgeries after track injuries. Sometimes I'm not really sure if it helped or not, but other times I can't imagine where I would be without the surgeries.

I've played piano and bass ever since I was little. Last year, I began having hand joint pain from overuse due to the hypermobility. I was in hand therapy for 3 months, but I didn't find it to be working so I stopped (the therapy was very expensive). I'm not sure what I'll do about it right now...but I'm sure I'll come with some solution.

I've been in hand, shoulder, ankle, and quad physical therapy so far. The quad was probably the most effective but also the least serious injury. Shoulder therapy also helped; however, you must devote the time to do the exercises every day for 20 minutes for it to work its best.

I've had my share of injuries. I have 5 orthopedists at the moment and my trainer at school told me the other week to "just stop, be the manager." Some doctors have told me to quit sports altogether; others have told me I can fully participate. Many have told me that I will probably have arthritis starting in my late 20s (I'm 17 at the moment). I read an article in Runner's World that found the highest rate of injury in army recruits was found in the most flexible (big surprise). But being hypermobile is not always a death sentence to sports.

Here is my advice to the young people and their parents:

Try sports, but protect yourself. Wear ankle braces, patellar tendon straps...anything that helps. (I can recommend a few good ankle braces if anyone wants.)

Stop at sharp pain. Don't push your body farther than you know it wants to go. If something doesn't feel right, take a break.

Don't push your body into positions it was not meant to be in. Don't show people how flexible you are or intentionally pop out your joints--it is very bad for you! (even it if impresses or grosses out other people).

If injured, give your body enough time to heal (or even more).

Don't give up.

Even though I'm back in therapy now and feel discouraged often, I am looking into other forms of exercise that I can do injury-free. Right now, I'm testing out Pilates and my dad wants me to try biking.

Everyone is different. Hypermobility can be an advantage to some people--just look at Natalie Coughlin, Olympic gold medalist who has hypermobile elbows and knees. Many famous violinists and other musicians are hypermobile.

Good luck to you and your children. If anyone wants to talk more, my e-mail address is here.


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