By Diana on Monday, March 19, 2001 - 12:30 pm:

Hi, my name is Diana and I have 3 children ages 2, 6, and 9. All three have double joints and hypotonia. All three have developemental delays and speech delays across the board. My oldest, Nolan continuously has popping joints. This started about 2 years ago in one knee. Since than it effects both knees, both ankles, and both wrists. When they pop they cause him a great deal of pain and he is unable to use them until they pop back. Nolan says it feels like the bones separate and when they pop again they go back. Some days this happens several times in a short amount of time. Like when he is walking in the store and his ankle pops and he has to sit down until it pops back. A short time later it happens again. Other days he doesn't seem t o have much problems. Jumping, running, and playing sports seem to agrivate it, however sometimes it happens for no reason. Usually we don't notice swelling or heat in his joints. Nolan, is very skinny, in the 3% for weight and 10 % for height. He has longer than average arms and legs. And, very long toes and fingers. He has complained of chest pains however the EKG's are normal. Just recently we found out he has a vision problem. His brother also has vision problems and had a sunken chest. We took him to a genetist but she said he didn't have Marfan's or EDS. However, we are considering a second opinion. Does anyone have any information on what might be causing these problems and what we can do to help With Nolan's joint problems.

Thanks, Diana at amersport@hotmail.com

By Spencer on Tuesday, March 19, 2002 - 03:44 pm:

I don't have Marfan's or EDS and my sholders and hips pop in and out probably 40 times a day. Many of my others joints also partially dislocate on a daily basis (knees, elbows, ankles, toes, pinky and thumb). It is possible for the diagnosis to be hypermobile joints period.

By Dawn S. on Wednesday, March 20, 2002 - 10:08 am:

Diana, you should check out the "hypotonia" topic on this website for more info. There is a reference to a UK website for hypotonia. I checked it out. It appears to have a lot of good information. Dawn