By Lisa Schuler on Sunday, June 04, 2000 - 03:40 pm:

I noticed two months ago that my baby's joints were popping and moving. I think I might be driving her doctor crazy because I do not want to drop it. It does not
seem normal to me. Last week I picked her up and felt her spine, pop pop pop. She does not have pain or discomfort, as far as I can tell. She puts weight on her
arms and legs but has yet to sit or crawl. I am not pushing her. My doc told me yesterday (over the phone) that she most likely has hyper? joints. And as long as
there is no swelling or redness in the areas of the popping, not to worry about it. She says she's just going to be one of those kids who pop. She said also, she might
be a gymnast. HELLO! I am not at all comfortable with this. I am not looking for problems but I certainly want to help my baby. Sometimes when I pick her up, her
arms almost go straight up and I feel like I am going to drop her. Please help me. Any feedback at all. Please I am begging you. Anyone? Lisa Schuler

By Andrea Thomas on Sunday, June 04, 2000 - 03:41 pm:

Dear Lisa

I have been diagnosed with HMS a few years ago after the birth of my daughter. After the diagnosis, and after starting to read so much about the condition, I have
come to realise that I must have obviously been born with it. The condition does run in the family, as it might well do in yours. Try to find out who in your family has
popping joints, or who was still capable of bending over, legs stretched and touch the floor at an advanced age. My mother was able to do that until she died.

My daughter is also somewhat hypermobile, and it seems indeed that a diagnosis is very difficult in children because they tend to be more mobile than adults anyway.
I yanked my daughter up from the street one day when she was about 18 months old because she was throwing a tantrum (this action was purely taken to prevent
her from being run over!) The sound that came from her shoulder was like a muffled shot. I had the shock of a lifetime and a conscience to go with it...

Whereever you live, try to find a peadiatric rheumatologist (try a children's hospital) and approach any doctor directly about joint hypermobility. I was a sports
teacher so I would advise you not to hold your daughter back. Have you thought of taking her swimming? That would tone her muscle, it's a very low impact sport
(weight off joints) and, above all: fun! It's also a kind of activity that she could do for years, and you could join in. And you can very often do it on holiday as well, in
any country.

For the time being, try to resist any temptation of surgery and/or braces. Neither help in joint hypermobility, and are questionable anyway with regard to loss of
muscle tone. Also, there seems to be a connection between loose joints and unsatisfactory collagen maintenance. Since collagen is found in connective tissue like
tendons and ligaments but is also needed in the scarring process people with loose joints tend do scar very slowly, and badly. Try also, as she gets older to discreetly
discourage her from showing off her loose joints as this will aggravate the matter. And do not send her to ballet classes! Or gymnastics.
Take care and best wishes - Andrea

By john on Sunday, June 04, 2000 - 03:41 pm:

Dear Andrea
I thought your advice was well thought out and helpful to Lisa. The only thing I wopuld question is whether ballet or gymnastics is harmful. My reading of this subject
and understanding of the patho-physiology of this condition indicates that these activities will not cause any detrimental effects. The muscle strength and control is
important and if the activity ever ceases then the ligaments will return to the original lengths. The fact is that people with HMS actually excell at these activities.

By Sue C. on Sunday, June 04, 2000 - 03:42 pm:

I would also question ballet or gymnastics. Elementary level may be OK, but I doubt she could go further... ballet requires pointe, which is virtually impossible with
flat feet. And holding on to a bar to support her weight is out of the question if her fingers are quite hypermobile.

Perhaps martial arts??? Good luck.

By john on Sunday, June 04, 2000 - 03:42 pm:

Lisa,
With respect to Gwen, Sue and Greg do not worry. Your baby is far to young to be diagnosed with HMS (you have to wait until she/he is 10 to 12 years).
Yes there are a number of connective tissue conditions that can cause excessive joint mobility but a Pediatrician is well trained to identify these, particularly if you ask
him directly about this.
Your baby could be just hypotonic which will change normally with the oncoming months. Or your baby could be perfectly normal and the problem is 'new mother
syndrome'. Get your child to a baby specialist and ease your mind.
John

By Gwen on Sunday, June 04, 2000 - 03:43 pm:

Lisa, you are right to be converned about your baby. I have hypermobility problems which were not dioagnosed until after I'd had children. Neither are particularly
hypermobile, probably at the upper end of normal (whatever that is), but I managed to dislocate my daughter's elbow when she was 15mths old by trying to restrain
her as she pulled away from me when I was holding her hand. If you are already aware of your daughter being hypermobile you will need to take particular care of
how much force you apply. Believe me I certainly didn't yank my daughter's arm but the combination of torque and weight were enough to do damage. Also it is
important that you don't let her be pressured into doing sports if she says she isn't able to. Unfortunately many teachers still have a gung-ho fresh-air and exercise
attitude to life. Make sure you document what you see and feel so that you have something concrete for her if she needs it in later years, rather than just relying on
your memory. I have made both my children aware of the potential problems hypermobility can cause and have attempted to trace back my family history as there is
frequently a hereditary component to the condition. Are you a hypermobile person or your baby's father. Do a little exploration and asking of relatives. You may be
surprised by what you find. Hopefully your daughter will have the best scenario, hypermobility without the pain, subluxations etc. Best wishes

By Sue C. on Sunday, June 04, 2000 - 03:43 pm:

You are definitely on the right track to pursue this issue! She will thank you later!

I differ with Greg's opinion a little -- the RIGHT ortho or rheumatologist WILL CARE. It will take a lot of phone calls to doctors' offices to find someone, but it's
worth the time to pre-screen any doctor before making an appointment.

Where are you? (Dr. Gewanter in Richmond, VA is a pediatric rheumatologist and diagnosed me. I would recommend him to others.)

At this point, prevent any awkward looking motions, such as knees turning backward, etc. And tell her to not hyperextend anything, once she starts to understand.
Encourage "normal" motions as long as there isn't pain.

Perhaps bracing and physical/ occupational therapy would help to train her to move normally, but leave that up to the doctor you will trust with her care.

And read whatever you can about hypermobility, Ehlers-Danlos, and other joint issues. This forum is a great place for those of us with EDS/HMS to vent/ learn/
exchange ideas. ednf.org and other websites are more scientifically-based, but are definitely worth reading or contacting.

Good luck with her. I'm glad you're pursuing this SO early!

By Ellen on Sunday, June 04, 2000 - 03:44 pm:

My daughter Rachel was diagnosed with Hypermobility Syndrome (EDS III) in May of last year at the age of 16. We knew from the minute that we brought her
home from the hospital that she was very loose jointed and her doctors didn't think it was anything to be concerned about. In March of last year, after numerous
injuries playing sports, Rachel's shoulder started dislocating several hundred times a day. It still took 12 weeks and to find someone who could diagnosis her. If I
knew what I know now I would pursue a diagnosis. If we had known we could have trained Rachel not to use her loose joints to amuse family and friends and lead
her to less stressful activities instead of competitive sports. She is doing well and finally under the care of a physiican who understands and a physical therapist who is
the best.

Best of luck to you.

By Greg on Sunday, June 04, 2000 - 03:44 pm:

Lisa,

Your doctor more than likely has no idea when it comes to hypermobile joints. It sounds to me like your child has Ehler's-Danlos' Syndrome. Which type I do not
know. You need to find a specialist in your area. This is definitely viable concern for you as a parent. Do not push this child to do physical activities when she is
older. Hypermobile joints are somewhat common, butwhen cracking and popping is present, it is certainly not "benign." EDS is a very rare condition and it wil be
very difficult to find a doctor who truly understands this. If you can, bypass all orthopedists, and rheumatologists, as I have found that most will tell you that nothing is
wrong. You need to find a musculo-skeletal disorder specialist. I am not sure than anything can be done at such a young age, but as your child grows older you will
want to look into prolotherapy and knowledgable physiotherapists. Best of luck :)

Greg

By heather on Sunday, December 31, 2000 - 01:46 pm:

my daughter has been seeing a physiotherapist since she was 13 months old due to problems with her joints especially knees and ankles. i asked for her to be reffered to a geneticist because i have always had problems and have had surgery on both knees. xander(my little girl) has benefited from exercises,theraputic boots and regular physio so far. on the subject of ballet etc. our physio says that gentle dancing appropriate to her age-2 years would be fine but that we should always be present and if she gets tired to stop. starting with a shorter time would be better and never over extend the joints. we have a family history of ehlers danlos type 3 and are british- things seem to be done differently over here-some better, some worse.xander has had dislocation of her knees and toes-just me pulling her sock when her toe wasnt in the sock properly!good luck.
heather

By jane on Monday, January 22, 2001 - 02:29 pm:

I have EDS III and started gymnastics at 6 and
continued for several years. I do not dislocate
my shoulders, so parallel bars were fine. In
fact, I never had a single gymnastics injury and
the flexibility helped a lot. I am more stable
barefoot than in shoes- it seems the farther my
feet get from the ground the more likely the
ankles will give out. I would sprain my ankle
walking on the sidewalk to a friend's house, but
no problem with gymnastics (other than non-painful
bruising). Also, my experience is that poor
muscle tone causes more problems than a careful
exercise program. You have to strengthen the
muscles around the hypermobile joints if possible
to help stabilize these areas (I understand that
some people are in too much pain to do this).

Moral of story- approach all new sports cautiously
and do what feels right. Also, don't coddle your
kids about this stuff. I would have died if my
mother had watched over me like a hawk at every
sports practice. Sure I hurt myself, but nothing
life threatening. Educate you kids on their
condition and then give them some freedom to set
their own limits.

By Ian on Friday, January 25, 2002 - 10:48 am:

Jane,

I do agree with you in much of what you write, but I still feel that any exercise or activity of a jarring nature is not good for hyper mobile joints.

Your words "Also, my experience is that poor muscle tone causes more problems than a careful exercise program. You have to strengthen the muscles around the hypermobile joints if possible to help stabilize these areas" are just so true. Also, not putting on excess weight will lessen the load on these muscles.

Ian

By Janelle on Tuesday, December 28, 2004 - 03:52 pm:

Hi, I'm 24, I have been diagnosed with EDS when I was 5th grade.I do have a "shinny scar" so call cigeratte paper. I never dislocate my joints before. I've look on the internet and saw some pictures of people with EDS and hypermobile joints. I do have double jointed fingers, I can pull my skin from my flesh. However, my fingers don't bend as much as some people shown in pictures, and my skin won't go as far dramatic as some EDS picture shown on the internet. I also went to a cardiologist (recommanded by my genesist) and he said my heart is functioning normally and healthy. Can I assume that I have classical type EDS? Do I have the gravis EDS (type I) or Mitis EDS (type II)? How do I know?
And also, my husband and I are thinking about having a baby. Is it safe to have baby for Classical type EDS patients? Will my life be in danger if I'm pregnant?