By Diana on Monday, March 19, 2001 - 12:59 pm:

Hi, my name is Diana and I have 3 children ages 2, 6, and 9. All three are double jointed and have hypotonia. They also have developemental delays and speech delays across the board. My 9 year old is having a hard time of it. For the las two years he has been having problems with popping joints. In the beginning in was just one knee, now it affects both knees, both ankles, and both wrists. The way he explains it to me is that when it pops it feels like the bones separate and when they pop again they go back. This causes a great amount of pain and he is unable to use the joint until it pops. Nolan has longer than average legs, arms, toes, and fingers. He is in the 3% for weight and 10% for height. His muscle tone is (<3%). His joints don't seem to swell or redden or have a fever in them. He saw a genetist and she said he did not have Marfan's or EDS. We are planning to get a second opinion. She saw him about a year ago and the problem has gotten a lot worse. We recently moved to the Joplin, Missouri area. Nolan is also mildly flatfooted.

Any information would be appreciated.

Diana at amersport@hotmail.com

By natasha on Wednesday, March 21, 2001 - 03:19 am:

hi diana
my son 4 has hypotonia, hypermobility, severe speech and lang delays
my daughter one has hypotonia, hypermobility and so far no speech and lang issues, tho ahs a weak suck....

see http://freespace.virgin.net/bch.hypotonia

i and two siblings have hypermobility etc - we've all been diagnosed by rheumatologist as HMS/EDS hypermobile.... geneticists were no use ...i suggest you see an EDS expert who can rule in or out EDS better than a geneticist. with three kids affected there has to be a herditary component and EDS is an obvious candidate --or one of the other connective tissue disorders.

geneticists are trained to identify syndromes but can not and are not experts in those syndromes so i would seek a second opinion from EDS expert - contact http://www.ednf.org for specialsits in your area..

By Diana on Wednesday, March 21, 2001 - 05:53 pm:

Thanks for answering my post. We are going to ask our new docter to refer us to a rheumatologist. There is one question I do have. Nolan does have joint laxity, mainly in his knees and wrists. However, he doesn't have much in his fingers. He was unable to do the flexiblity tests. He could not reach the floor and could only dorsiflex his little finger 90 digrees. He couldn't oppose his thumb to the flexor aspect of the forearm. Does a person have to have the flexibility componant to have the syndrome even if they are double jointed. Nolan seems to have many luxations in his ankles and knees and sometimes in his wrists. Recently, we found that Nolan was having vision problems and had 20/50 and 20/70 vision. Nolan also has short term auditory processing disorder and dyslexia. We are also checking into celiac which I recently found out I have.

Diana at amersport@hotmail.com

By Geri on Thursday, March 22, 2001 - 09:37 am:

I read on the HMSA site somewhere that you can be classed as having HMS even if only one joint is affected. Apparently you dont have to have loose joints in every single joint. I don't have the link but if you do a search you should find the site. Hopefully it can be of use to you. Hope your son is OK

By Diana on Thursday, March 22, 2001 - 10:45 am:

Hi, thanks for answering my post. Today, Nolan woke up with pain in his left hip/thigh are. He was barily able to walk. He said it didn't pop but that it hurt really bad. Usually, his joints pop and than pop back in and the pain goes away. This is the first time he has pain in his hip/thigh area. He also complained of chest pains. These are brief stabbing pains that don't last very long. He has had an EKG and an ultrasound of his heart but everything appears normal. He has had these on going and sometimes in his stomach. Anyway, we kept him home from school and he is more mobile now but still complains of the pain. He does not purposely pop his joints, they seem to do it spontaniously. He also has a spasm you can feel in his knee joint that you can sometimes feel. The docter told us he thought it was a muscle spasm. What do these do to the joint. When he has them there is no pain. One docter also thought his chest pains were muscle-skelital in nature. Does any one know what would cause these? He sees his new docter April 3rd, hopefully we can get to the bottom of this. His teachers told him that double jointed is fun and shouldn't hurt him, but it does. I don't think they understand how much pain this has been causing him. I told them at his IEP meeting but until I get a docters notice he will still need to participate in gym activities, like kick ball. Does anyone have any advice or suggestions on how to help him with his joint pains and popping?

Diana at amersport@hotmail.com

By Sharon on Thursday, March 22, 2001 - 04:18 pm:

Diane,
I have had bad chest pains to and thought that i was having a heart attack if turned out i had dislocated/subluxed a couple of ribs and this was causing the pain. I do have trivial mitral valve regurgitation so have an audible heart murmur. But have no heart problems.
Hope this helps
Sharon

By Diana on Thursday, March 22, 2001 - 08:32 pm:

Thanks for the information. Nolan has sharp stabbing pains. When you have your chest pain do you feel popping or can you feel your ribs shifting? Nolan is doing better. He was moving around and jumping later today. Tomorrow he should be able to go to school. Have any of you had children have a joint lock or painful that they were barily able to get around. If so, what was your approach to a situation that happened before they went to school. Usually, Nolan's problems are short term however sometimes they can last a long time. Also what can you do when they have chest pain and it is from a joint sublication? Can this cause long term damage to this area?

Diana at amersport@hotmail.com

By Sharon on Sunday, March 25, 2001 - 03:59 pm:

Diane,
With my chest pains i didn't feel my ribs popping or shifting (it happened in my sleep) but fet hard to breath and (i thought i was having a heart attack) i called my therapist and she checked me and could see that 2 of my ribs were out (i didn't even know you could dislocate/sublux ribs).I don't have children but have had the feelings of locking in joints and at many times are barely able to walk etc.
Hope this helps
Sharon

By Lin on Monday, March 26, 2001 - 01:55 pm:

Diane, I may have some help for the chest pain problem. I have HMS and possibly EDS, have to see the geneticist still. I get it from my father. I also get sharp stabbing pains in my chest that are brief, and my mother told me it was the same thing my father has, but i havent seen a doctor for it because it isnt severe and my other problems take first priority. My father, I dont remember what exactly it was called that he was diagnosed with, but the arteries around his heart mildly constrict, causing pain. when he was younger the doctors couldnt figure out what it was because all tests were normal, and finaly he was diagnosed, though i dont remember how. If you want me to i could ask him about it. He is on medications that relieve all the pain and allow for him to function normaly despite that problem, although normal is not that normal with his HMS and arthritis. you can e-mail me at Lin_171@hotmail.com
Lin

By Diana on Monday, March 26, 2001 - 05:55 pm:

Hi, thanks for the info. I would be very interested in this if you could find information on it. I also have the same problem and have dislocated two shoulders and had one become a slip shoulder that would repeatidly dislocate until I had surgury on it twice. My toes also seem to mave spasms in them which causes pain and they look like they are going in two different directions, My joints continuously pop all the time but do not cause me pain. I don't know if I am double jointeed or not. Anyhow any information is welcome.

Diana at amersport@hotmail com

Also, I want to thank everyone for the information they have been giving us.

By Lin on Tuesday, March 27, 2001 - 06:16 pm:

Sorry, I thought he had an exact diagnosis, the doctor just left it as a dignosis of heart pain, angina, and started him on procardia. It was a brief stabbing pain in his chest that he eventualy thought it was a heart attack.
Lin

By Diana on Sunday, May 06, 2001 - 09:34 pm:

Hi, Thanks for everyone who posted us. Tomarrow we go to Kansas City, MO to see the Rhuemologist. Hopefully, he will have some answers. WE also go to see the developemental specialist on the 14th. The docter suspects Fragil X or similar disorder.

Does anyone know of a hypermobility disorder where the second and third toes are longer than the others and where the toes are very long as well as the fingers. Both my sons can cross their toes and appear to be very flexible in the toes and have long toes. My oldest toes are not curved on the ends beut appear to be straight and squared at the end. He is very bony but not tall only in the 10% height. Also has long arms and legs. Also has mild flat foot and very narrow long feet. Both feet have 2nd and 3rd toes longer than the others and all toes are squared. The Big toes are also very long as well on both feet giving them an almost extended look.

Any info would be appreciated.
Diana at amersport@hotmail.com

By Silvia on Friday, May 10, 2002 - 04:08 am:

Hi Diana,

I don't know of a hypermobility disorder that specifically affects the toes. However, I myself have long fingers; my toes in my opinion look normal.

I hope you get some better answers from the specialists you will be seeing.