By Lea Neilsen on Sunday, June 04, 2000 - 05:11 pm:

My daughter was diagnosed with HMS at age four.Her pain started when she was two. She went to a pediatric rhumatologist that told me she had severe loose
joints, but she would grow out of it. She said it explained why her motor coordination was so poor, but it was not the cause of her pain. She said my daughter was
just very dramatic and was trying to get attention by saying she was in pain. We never went back. That was two years ago. The pain has gotten increasingly worse.
Her pediatrician doesn't know what loose joints or HMS is and simply has me treat her pain and swelling with tylonal.
I get odd looks from teachers when I try to explain why she isn't lying when she says it hurts to much to move or why she is so uncoordinated and clumsy. This is the
first site that I've found that did more than give me a deffinition of HMS or loose joints. Can anyone give me any advice on what I can do to help my daughter. She is
very very active and when the pain hits it crumbles her world. Sometimes walkin around the block is all it takes for her to be in pain.

By Sue C. on Sunday, June 04, 2000 - 05:12 pm:

1. Talk to her about using her joints normally and not showing off any "tricks." This should help now and in the long run.

2. Find some doctors who know something about HMS/EDS!

3. Keep being her advocate. And research this forum for those afflicted and all mentioned websites for more "medical" info.

By Andrea on Wednesday, August 02, 2000 - 04:14 pm:

Dear Lea

My heart goes out to you. I have HMS and a 4 1/2 year old daughter who probably has the conditon as well. One of the things I have done is to take her swimming since she was a baby, not so much for her sake but for mine: she was such a heavy wriggly-worm that I did not know what to do with her! I have a teaching degree in sports so I would say this: try to get your daughter as fit as possible. Water is a very good environment as it takes the weight off the joints and tones all muscles. It is also an activity she could do with you, or friends, or attend swimming classes. That is, of course, if you have a swimming pool nearby... The other thing you could try is to change her diet. A bit. Try to get in touch with a nutritionist, though, as you do not want to make matters worse than they are. It probably makes sense that since we hypermobiles spend so much time and effort every day just to keep our skeleton together that we also run out of energy very fast. So eating all the time is essential, if not also a symptom. Sugar is a disaster for your energy reserves, but she could try nuts, yoghurt, "cheese dippers", basically more protein. How about pulses? Does she enjoy cooking? Could you get her involved? Perhaps also in the shopping?

Please do not get me wrong here: my daughter (and I) enjoy sweets occasionally but we tend to refuel on things like yoghurt and fruit and nuts. The craving for constant food intake is worse in the afternoon when we are tired.

You might also want to look into massage or other relaxation techniques for your daughter. What you have to bear in mind is this: at the end of the day it is your daughter's life and she has to learn to cope with the condition. It therefore goes without saying that her teacher has to accept the her condition is painful and wears her out. Why don't you get her teacher to do some observation work herself? Can she detect a pattern? Would it help if your daughter were allowed to lie down in the middle of her "working day"? With some music? One of the most difficult things for her to learn is to pace herself. At four! Well, can you detect the signs? Does she suddenly stop, then slouch, or even collapse in a heap on the floor? Time for a rest, music on, a yoghurt, favourite fruit... and a cuddle! It's mutual, you know, you'll get one as well.

Love - Andrea

By Gwen on Thursday, August 03, 2000 - 12:12 am:

Lea, whereabouts are you? There are EDS/HMS support groups in many parts of the world. Look up http://www.ednf.org which is the American Ehlers-Danlos site. It has links to other sites around the world. Maybe if you do some searching you will find someone in your area with EDS/HMS who can put you onto a good paediatrician or rheumatologist. Word of Mouth is a wonderful medium for gaining knowledge.

By Barbara on Tuesday, November 20, 2001 - 02:47 pm:

Lea,

Hypermobility can be a real problem for kids with EDS. You may want to consider joining an online support group for parents of kids with eds. There's a list of online groups at http://www.edstoday.org/support.htm

EDS Today also has a column on parenting called "A Mom's Ramblings" which you may find informative. Email info@edstoday.org to learn more.

-Barb

By katt on Monday, November 26, 2001 - 05:22 am:

Also try http://www.hypermobility.org/ which has a kids section...