By Catta on Friday, March 02, 2001 - 01:31 pm:

I have two children, I suppose they both have EDS. The oldest one get's tired very easy, and his joints ar pretty hypermobile, not as mine though.For example he can turn his pinkytoe almost around etc. My youngest boy has hypotonia, he has these white "dots" under his feet, his motorical development leaves a lot to wish for.........etc. Now to my question: Is it possible for them to have EDS but with so various symptoms? I think it's nearly impossible for them NOT to have EDS, because I recognize so much from my own childhood. Not late motorical development. Has anyone experience from this in children, I would appreciate to get in contact! It's very important because our doctor is trying to diagnoze the youngest boy, and I think it's important to see the difference between EDS and any other disease he might/probably have. EDS is very unknown here. I hope I'm not to "blurry". TIA

By heather j on Friday, March 02, 2001 - 01:54 pm:

catta- do you want to know how eds affects my daughter? or do you want a more expert opinion on if your children could have it? i can tell you how eds affects my little girl whos 2 years but i don't know otherwise. post back and let me know if i can help
heather j

By Catta on Saturday, March 03, 2001 - 03:23 pm:

Yes, it would be a great help. He's also two years old. Thank you!

By heather j on Tuesday, March 06, 2001 - 03:29 pm:

catta- my daughter has EDS3 and has seen a physio since she was 1 year.shes now 2 and 1/2. there are lots of things that affect her. firstly she walked very late( although i didnt-and i have it too)and even now she walks very strangely. she sort of falls over her legs as she walks but now she has theraputic boots on she does better. she runs rarely and very unsteadly and when shes tired she resorts to walking around on her knees but this causes lots of bruising to her legs and she gets swollen knees. she also has problems when puting her coat on, she tries to do it herself but sort of bends her wrists completely backwards to get it on her arm!! then there is the way she never manages to stand upright herself but has to pull herself up on somthing or push herself up with her hands. she goes over on her ankles all the time and stands on the inside of them instead of the bottom. she sleeps with her wrists bent over backwards and her legs are a strange shape- the knees are on the inside if that makes sense. she has dislocated her knees twice and i disclocated her toes just by putting her sock on once.she always has loads of bruises and can't step up on things like a child of her age should. she complains of "poorly" legs and feet occasionally too. on a positive note she is progressing well under the care of the physio so at least we're getting on well.
if i can help any more please let me know
heather j

By Sally Jollow on Thursday, March 08, 2001 - 07:14 am:

Catta,

My 5 year old son has been diagnosed with EDS type 3. We were initially referred to Great Ormond Street Hospital in London because of the length of time he takes to heal which is excessive, and for multiple and easy bruising, he is also extremely fatigued. He was also experiencing terrible pains in his back, legs and neck and on some days found it difficult to walk. He is on stage 3 of the special needs register at school because of extremely weak hand control resulting in the inability to write for any length of time.

When we got to GT Ormond St they found they could bend him in all sorts of strange posiitions and initially would only confirm hypermobility syndrome, but now they have x-rayed him and looked at the scarring on his skin and his delayed reactions to local anaesethics, plus the bruising and general history, they have confirmed EDS. We are now expecting a call in the next two weeks for a physiotherapy assessment.

It is very confusing though to know the difference between EDS III and hypermobility syndrome which often is referred to as 'the same thing'.


Hope this helps in some way. Take Care.
Sally J

By Catta on Monday, March 12, 2001 - 01:18 am:

My youngest son has his fingers bent in to his palms. He has almost no balance at all and every movement is like a fine branch in heavy wind, if you knbow what I mean. When I was little I always fell on my head, wich the grownups thought was very cute, because I was a little clumsy. He does the same thing. He doesn't use his hands when he fall, he falls straight on his head, as I did.
The doctors are thinking about William Beurens syndrome, but they also thinks that it can be a combination of EDS and that. Bad luck, two syndromes on one child! So the muscluar wekness could be realted to EDS and the psychosocial symptoms to Williams syndrome. Thanks for your help. I will contact my doctor to share this things with him.

By nb on Monday, March 12, 2001 - 07:59 am:

my son 4 has hypermobility syndrome hypotonia and severe speech and language delay. my daughter nearly one has hypermobility, hypotonia - seeems on track speech and language wise. she has motor delays - cannot crawl yet and ends up doing the splits and getting in weird positions.
i believe we all three have EDS...i am also hypermobile, i and siblings have hypermobility and skin issues etc.
maybe my son has some neurological damage in addition - from birth?
see http://freespace.virgin.net/bch.hypotonia for his story under "your stories"

i havent heard of william beurens syndrome! a new one for me...
natasha

By nb on Monday, March 12, 2001 - 08:00 am:

my son 4 has hypermobility syndrome hypotonia and severe speech and language delay. he didnt walk until two years old and still cannot run or jump.
my daughter nearly one has hypermobility, hypotonia - seeems on track speech and language wise. she has motor delays - cannot crawl yet and ends up doing the splits and getting in weird positions.
i believe we all three have EDS...i am also hypermobile, i and siblings have hypermobility and skin issues etc.
maybe my son has some neurological damage in addition - from birth?
see http://freespace.virgin.net/bch.hypotonia for his story under "your stories"

i havent heard of william beurens syndrome! a new one for me...
natasha

By Tracey on Friday, May 25, 2001 - 04:24 pm:

My daughter is 10 months old. She had dislocated hips when she was born and what was referred to as dislocatable knees. Her hips have been given the all clear although we have to go to alder hey for a check up in a few weeks time. However, I am worried as she has started "crawling" which involves her legs getting in to the strangest contortions imaginable. She can do the splits, and pull her legs from behind to in front without bending them (and from front to back)...this is the best way I can describe it! Her feet also seem to twist in to unnatural positions. She does not seem bothered by this in the slightest. My doctor has not taken an awful lot of interest. Am I worrying about nothing. I'd never heard of hypermobility until I put in a search for double jointed. It would be great to hear other people's experiences.

By nb on Tuesday, May 29, 2001 - 08:55 am:

tracey is your daughter seeing a physiotherapist? you can refer yourself to the community physios or ask your health visitor to refer you.

my daughter's crawling is the same!

natasha