By Diana on Friday, September 15, 2000 - 09:46 am:

My son has just been temporarily diagnosed with EDS. He has always had hypotonia and was delayed in Gross Motor Skills, however, with PT he progressed rapidly. When he was 3 I noticed that he hyperextended his knees when he stood still. He did not complain that they hurt until about 6 months ago. X-Rays were normal. Took him to our local childrens hospital to the Phys. Med. Clinic and the doctor suggested that he has EDS. She did not mention type but is sending us to a geneticist for confirmation and typing (I assume). To my knowledge he has never had a dislocation. Maybe a sub(sp?) was what was hurting his knees as within one minute he would be playing again with no signs of pain. My question since I am new to EDS and Hypermobility is when, if ever, does joint paint start and does it progressively get worse?

I appreciate your help as I'm a pretty scared mom. If my son is in pain now and just thinks that it is normal, cause that's all he has ever known, I want to know it.

Thanks for your help.

By Rob on Friday, September 15, 2000 - 11:11 am:

Hello Diana:
My name is Rob and I have had EDS (Type III) all of my natural life, yet never knew what I really had due in part to the un-education of medical professionals. Firstly, I do understand your concern for your son and his Hypermobility with the right professionals and medical care he can have a chance to led a normal life. I would stongly suggest that you look into the following web-site which will help you find the necessary doctors who have a working knowledge of EDS and it's different types,(WWW.ednf.org) this site is the National Foundation for Ehlers-Danlos Syndrome.
A little more information about me, I am 40 years old and now I am facing early disability due in part to the EDS. I wakeup each day and my joints hurt more and more, I can sublux all of my major and minor joints at any given time. I will in time be faced with Osto-arthritis throughtout my body. Please don't let my case scare you due in part that I went through life not knowing what I had all that I knew was that I was double-jointed and no medical term was place on it.

If you wish to talk further you can reach me via- e-mail at RobtHeim@aol.com.

Take care and Give your son a BIG HUG for me and things will work out.

By natasha on Tuesday, September 19, 2000 - 10:17 am:

i discovered i had EDS III thru my son being hypotonic and very bendy!
recently i took my sister along to my hypermobility appt and she was quite surprised to dicover just how bendy she was too! she has clicky hips but no pain; I ahve knee pain and remember as a child having ankle and wrist pain - such that i was always asking mum to write me a note to excuse me from PE. teacher thought i was making it up...
at least no one will accuse my son of making it up!
get your son to an EDS expert and get info from the EDS group www.ednf.org - they can help you.

physio might help your son and just knowing the why can make all the difference.

nb

By natasha on Tuesday, September 19, 2000 - 10:19 am:

i discovered i had EDS III thru my son being hypotonic and very bendy!
recently i took my sister along to my hypermobility appt and she was quite surprised to dicover just how bendy she was too! she has clicky hips but no pain; I ahve knee pain and remember as a child having ankle and wrist pain - such that i was always asking mum to write me a note to excuse me from PE. teacher thought i was making it up...
at least no one will accuse my son of making it up!
get your son to an EDS expert and get info from the EDS group www.ednf.org - they can help you.

physio might help your son and just knowing the why can make all the difference.

nb

By Roseann on Tuesday, September 19, 2000 - 11:15 pm:

Dear Rob,
Tonight I read your message to Diana, and was wondering if you could help us out as well. My name is Roseann and I have two sons, ages
9 and 12. My 12 year old, Tim, began a year ago with a subluxation/dislocation to his right shoulder. The following day his left shoulder began to sublux, with no apparent injury to
either shoulder. Within a two week period he could sublux both knees, his toes, and fingers.
Our pediatrician said his ligaments were loos

e and not to worry. He odered PT for 3 weeks and said no further treatment was necessary. Tim's
right shoulder kept getting worse, to the point that PT had to tape his shoulder to prevent them
from subluxing during physical therapy. We kept
being told we were anxious parents and not to worry, that all was well with Tim. At our insistance, we finally got a referral to orthopedics, and we were told Tim had a Bankart
Lesion/Subluxation (tear of the shoulder). He
underwent surgery and his right shoulder is fine.
The pediatrician and ortho. have written us off, believing Tim's problems have been resolved. However, his left shoulder continues to sublux whenever he raises his arm up above shoulder level and his knees sublux occasionally. He has continual
back and neck pain. We've been told his spine appears "loose." With all of these symptoms
can you tell us if he sounds like a child with
EDS? We are desperately trying to find out what is wrong with him and the doctor's are no help.
We are trying to get them to approve an authorization to a clinical geneticist for diagnosis and we thought your opinion/information could help us. You said you could sublux most of your joints. Because of this, have you had any surgeries or treatment for this? Does continual subluxations cause any damage? How did you finally get diagnosed? Who did you go to that helped you? We would greatly appreciate a message
from you. We will keep you in our prayers Rob.
Thank you, Roseann and Mike

By Rob on Wednesday, September 20, 2000 - 03:11 pm:

Hello Roseann & Mike:

I just read your message and firstly could you tell me what part of the country that you live in, due in part that it might help me in finding or trying to find a medical professional in your part of the country. Now to address the questions and concerns that you have with your boys, yet it is greatly possible that your Son Tim could have Elher-Danlos Syndrome from the information that you have given me, yet I am not a doctor and can't really tell.

I would strongly suggest that you visit the following website: www.ednf.org which is the National Foundation for Elhers-Danlos Syndrome.
I have used and continue to use the resources that the foundation has to offer and they can and will give you a free membership to the organization in the event that you can't afford it at this time. You stated that you are looking for a geneticist and I will atest to the fact that they can find out what is really going on with Tim and his body.

Lastly, you asked how I found out about my EDS, and the anwser is that during the month of August of 1999, I was reading an article on EDS and at the time I never knew that I had it due in part to the lack of information regarding the subject, I found out that the National Foundation had a convention in Philadelhia,PA. a week before I read the article. I contacted the National Foundation and they replied to me with the University of Pennsylvania, Department of Medical Genitics, Philadelphia,PA. Now we come to the point of Sept 2000, I am forty years old and I am being faced with the fact that due in part to my employment I will be applying for total disability coverage through Social Security.

Here is a list of my total condition as it stands as of 19 Sept 2000.

TMJ of the right side of my Jaw.
Partical subluxation of the left shoulder.
Total subluxation of the right shoulder.
Poping & clicking of the neck.
Partical subluxation of both knees
Partical subluxation of both hips.
Partical subluxation of fingers & wrists both hands.

The chances are greatly against me, due in part to the fact that any corrective surgeries will not work in my case. **You mentioned that your doctor not to worry, well don't worry just be councerned, The MEDICAL PROFESSIONALS are just starting to gain knowledge of EDS, and a added point is that I just became cerftified in First-Aid and CPR and the American RED CROSS had NO KNOWLEDGE OF EDS.

In closing, make sure that your Tim's school & school nurse has some basic knowledge of EDS due in part to the simple fact that if he is picked up incorrectly another joint could sublux, also I have made up a plain medical information card that describes the condition and how to care for me in the event that I sublux a joint and can't move, another suggerstion is to have Tim wear a Medical Alert Braclet, it will help the medical and EMS personnel assist Tim in the case of an emergency.

I am enclosing my personal E-mail in the event that you wish to contact me further, I haven't really checked the site as much as I would like so here is my E-mail: RobtHeim@aol.com

God's Blessings and Give both of your Sons a Great Big Hug for me, things will work out with the right medicial professionals and your continued education on the aspects of EDS.

Sincerly,

Rob.

By Jill on Thursday, September 21, 2000 - 10:55 am:

My almost 4 year old daughter is hypermobile and we have been dealing with this now for about 6 months. She has been in PT, so far its not helping. I have read for children that strengthening the muscles around the joints is the key. She is also in therapeutic riding which helps her alot. We are waiting to see a geneticist in this area to have her genotyping done. Her pain is very strange, it comes and goes in pain phases and its hard to tell exactly what brings it on. Her dotor FINALLY gave her a pain reliever so she could sleep at night - most of her pain is due to inactivity during sleep and naps. Please email me if you want to correspond. Seems like we are dealing with similar children. jasobel@msn.com

By Patrina on Monday, September 25, 2000 - 04:18 pm:

Hi, all,

I've had this from childhood. Specifically, and worst, one of my knees would buckle when I ran. I'd fall down, in extreme pain. I got up again & tried to continue. It was a big mistake. Monitor your kids and be sure they let you know when/if their knees buckle or lock up on them.

I didn't tell anybody (and this happened to me frequently when I ran; regularly when I bicycled). I was afraid of doctors. I should have been 'sitting out' certain activities in p.e. and recess.

Instead, I repeatedly injured my joints, especially knees. I had my first knee surgery at the age of 22. I wouldn't wish the injuries and their aftermath on anyone, and believe me, you don't want your kids taking any joint damage that can be avoided.

For any of you who are facing surgery, let me clarify. I had arthroscopic surgery (twice on the right knee; the second was when I was 38 years old). My orthopedic surgeon removed lots of torn cartilage and fragments of bone that had been broken off, or were arthritic bone spurs which broke off. Either way, this debris can prevent the joint from moving properly (especially 'locking'). It's usually day surgery and recovery is relatively easy and quick.

FYI, I started having worsening of same symptoms in my other knee (the 'good' one, on which I had depended for years). We thought at first that it was more arthritis & would need the same treatment.

In my case, it turned out that I had a very rare tumor in the joint. Pigmented villonodular synovitis. I had surgery last Tuesday. Sometimes this recurs, sometimes not. I have not heard of anyone else with hypermobility having this, so there may well be no relation between the two.

Anyway, parents and kids, be careful not to do too much. Avoid damage to the involved joints; you'll be glad for the rest of your lives.