By Laure on Sunday, June 04, 2000 - 04:57 pm:

Hi All,
My 6 yr old daughter has been diagnosed with Ehlers- Danlos Syndrome III. I am looking to learn as much as I can.
The doctor wants us to have an echocardiogram for a base line on her aoreta. He said that it can become stretched with EDS III and we need to know if this is
happening and to what degree. Does anyone have any experience with this?
My daughter also has ADHD, Sensory Integration Disorder and a non verbal learning disability (all which are neurological issues). She is also profoundly gifted. I am
beginning to wonder if there is any connection. Her father has EDS III and also has ADHD,and is also gifted. I can't help to wonder that there is more to this? Is
there anyone out there who has a child or has these issues together with EDS?

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

I had my first echocardiogram yesterday, requested by the rheumatologist who diagnosed my EDS earlier this month! He was also worried about my aorta. I was
more concerned about mitral valve prolapse. The echo showed both were normal -- thankfully! It's a 1/2 hour - 1 hour ultrasound of the heart. My technician
explained literally EVERY image that appeared on the screen! The only things you encounter are 3 electrodes that are taped on you and this
bicycle-handlebar-shaped device with some jelly on the end. The tech moves the wand to several positions as you lay on your side or back or somewhere in
between. I thought it was quite interesting!

A wealth of info is on this forum from those who have EDS/HMS. Take a few hours to read thru. And make notes of other websites mentioned throughout our
"conversations" on the forum -- those tend to be more scientific, rather than experiential. You should find almost everything known about EDS this way. (It is a
little-researched "orphan" disease that basically means we lack the necessary collagin in our tissues.)

I don't know of any connection to the other more neurologically-based disorders. You may want to research those also. I could envision ADHD as being related,
especially if there is chronic pain or discomfort -- ADHD could be a coping mechanism.

Regarding giftedness -- a number of people posting to this forum "sound" gifted to me, judging by their levels of thought. "Giftedness" is one trait prevalent in my
family (including me), even if EDS isn't anywhere else in my family.

One final thought -- have you had your daughter's vision checked by an eye professional who knows EDS or even the doctor who diagnosed her? Eyes are
comprised of collagin and other substances.

And the ear is comprised of tiny joints which may also have a collagin component, so these should also be checked.

It's possible that there could be a problem with her eyes, ears, or other sensory organs because of a collagin problem, thus disturbing the way her brain is trying to
interpret the world.

Good luck! I'm glad you are pursuing this so early in her life.

By Rhenda on Sunday, June 04, 2000 - 04:58 pm:

As far as the ADHD, I would have a nutrition screening done by a DO or natural nutritionist. Yeast overgrowth caused by our 'American' diet causes many attention
disorders. I was diagnosed with this and have since cut out all carbohydrates. I have more energy and can finally think clearly (also helps with weight loss) Fruits,
carbohydrates and sugars feed the yeast. She may also have a wheat or gluten allergy that will cause this. I am having my daughter checked out as her behavior is
less than desireable lately. Read The Missing Diagnosis by Orian Truss or The Yeast Connection by William Crook. Good luck!!!

By Laura Phillips on Saturday, July 15, 2000 - 02:59 pm:

EDS NORTH LONDON GROUP

I am the above co-ordinator for the EDS Support Group UK.

If anyone wishes to contact me please do so as

laura@edsuk.fsnet.uk

Myself and my 5yr son have type 3