By Angie on Sunday, June 04, 2000 - 12:57 pm:

my son is 2 years old and he was diagnosed with HMS at 11 months. At 18 months he was diagnosed with hypotonicity. he started walking 1 week before his 2nd
birthday and now has orthopedic molds to give him the much needed support in his ankles and knees. He has already suffered from a broken collar bone and a
dislocated knee. I live in New Brunswick Canada, so information is very limited, I can't seem to get any one to really tell me what to do, other than keep his doctors
appointments my role is non-existant. I want to help him, I just don't know how. This will be hard enough on him growing up, I would like to make it easier if i can.
If any one can offer anything at all to help i would appreciate it.

By Sue C on Sunday, June 04, 2000 - 12:57 pm:

You've already done a lot to obtain a diagnosis and learn about his situation. (Read all you can on this forum, ednf.org, and other websites suggested throughout
this forum.) As he asks questions and is able to comprehend the information, share it with him.

He'll need your emotional support, encouragement, and understanding now and in the future. That's probably the biggest gift you can give him.

If you are looking for something more tangible or physical to do to help him, encourage him to use his joints like normal people do. Discourage him from doing
"tricks" or showing off his range of motion. Encourage activity that he enjoys. Discourage ALL contact sports. Now and as he gets older, he will find his own
coping mechanisms and tolerance levels, as many of us have.

Discuss his situation with teachers, playmates, playmates' parents, etc. so he is not involved in activities that will harm him now or in the long run. Encourage him
to be involved in the discussions and to lead the discussions when he is older.

Dislocations will happen -- it's the nature of hms. With some physical precautions, knowledge, and NO "babying", he should be able to handle it better than a
number of us who didn't learn of our problem until we had damaged ourselves thru activities we should have avoided when younger.

Hopefully, the medical communities of the US, Canada, UK, Australia, Europe, etc will eventually start acting in our behalf and start diagnosing us sooner (like
your son) and developing methods that are medically proven ways to help us regain stability and/or minimize the pain.

Good luck -- You're on the right track!

By Gwen on Sunday, June 04, 2000 - 12:58 pm:

Angie check out http://www.hmsa.freeserve.com.uk and also the Canadian EDS site http://members.home.net/ceda/ Even though your son has been diagnosed with
HMS rather than EDS the symptoms are similar and I'm sure you'd get lots of useful information and support from CEDA.

By Gwen on Sunday, June 04, 2000 - 12:59 pm:

Oops the HMSA site should be freeserve.co.uk. Sorry about that.

By tina on Saturday, July 29, 2000 - 06:28 pm:

My 2y/o daughter was just seen by a ortheopeadic doctor for leg length discrepancy and was given the diagnosis of hypermobility. The doctor said not to worry, that her legs would get stronger and that she was "loose jointed". My daughter does have a difficult time with running but does not appear to be in any pain and the doctor said she should come back in 3 years for follow up. After reading info. on HMS I am concerned because I was diagnosed with juvenile rheumatism when I was 4 years old. I read that HMS is genetic. I feel like the doctor made light of a potentially serious condition. Should I be worried.

By Cindy on Monday, July 31, 2000 - 10:39 am:

Tina, I was dx'd with Juvenile Rheumatoid Arthritis when I was 20 months old. I know that some forms of arthritis can affect bone growth, my jaw was severely affected. A Rheumatologist specializing in Pediatric Rheum could problably help you the most, although they are evidently hard to find. My Rheumatologist does research in JRA, people drive in for hours to see him.

My son is 3 1/2 y/o, he has always been a little delayed w/his motor skills and has a bad limp in the a.m. I was told it was improbable that he would also have JRA, so we saw a Neuro who said he was just slow & clumsy. Finally I asked my Rheum to see him- his DX was hypermobility & hypotonia. I'm frustrated that it took so long for an answer of sorts. We are now looking into the genetic factor & I just found out 2 of my cousins are hypermobile.

A second opinion could be very helpful. Good Luck.

By natasha on Wednesday, August 02, 2000 - 04:16 am:

check out also the benign congenital hypotonia website at http://www.lightlink.com/vulcan/benign

my son is diagnosed hypotonia, EDS hypermobile/hypermobility syndrome (same as me) plus he has speech disorder

natasha

By Robin on Thursday, August 10, 2000 - 11:00 am:

My niece is 4 months old and we suspect she has EDS. Skin biopsy was done and we are awating results. She cannot suck or swallow and has had a feeding tube inserted through her nose. She is severely hypotonic. She also had a mild stroke at or prior to birth, clonus was a result. It has been very difficult getting a proper diagnosis, several doctors have seen her and seem stumped (Larson's syndrome was also mentioned). Has anyone experiened this in order to shed some light?

By Dawn Schaller on Saturday, January 19, 2002 - 06:14 am:

I saw a site on the web for Chromosome 5 deletion (http://mcrcr2.med.nyu.edu/murphp01/chrom5q.htm). It had symptoms of low tone, joint hypermobility, low weight although height normal, early heart problems, developmental delays, respiratory problems, abnormal chest cavity shape, slight scoliosis and ASD and PDA problems (don't have a clue what those are). Many of the problems are similar to HMS or EDS Hypermobile type with a few exceptions. It might be worth checking out. Good luck.