Re: Re:Help for Newly Diagnosed Boy

January 13, 2004

In a message dated 1/12/04 9:24:30 PM Eastern Standard Time,

gustafson1@... writes:

<< 1. Does anyone else have her son's type of symptoms (All these are pretty

typical, right? Does it sound like type IV, and should I really stress that

he

be tested for type IV?)

Yes, Sue Ginley here........it is hard to tell what type he might have just

from symptoms, as EDS is a syndrome and often times the symptoms you mentioned

could be occuring in all types. But to be sure it sounds like he should be

tested. Has your daughter been tested? Just curious as there are many that

have been misdiagnosed with EDS II, as initially without severe symptoms it may

appear to be so, until intestinal/arterial rupture....then thought to be type

IV......

2. They are thinking of moving to Kingston, Ontario (It is northeast of

Toronto). She wonders if anyone knows any good doctors to care for her son

in

that area.

Jill or Beth? They would be able to help you with this one.....I am in the

US.

3. What type of regular care/screening should her son be receiving? Do

people with type IV or vascular symptoms with other types of EDS have

regular

scans or tests of some kind?

Some do, some do not. It depends on the individual and what their doctor

believes as there is quite the disagreement on this one in the general medical

community. I have met with this issue quite a bit as of late. I for one want

to be monitored.....I am hoping it might help someday.......others are of the

opinion to only monitor if the individual has symptoms, as what is going to be

done with the results? Aggressive treatment is not recommended or at least

supported at this time.

Hope this helps.

Hugs,

Sue

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