Re:Help for Newly Diagnosed Boy

[Guest guest]

Hi,

My daughter is the one with type II EDS with vascular problems and had her

colon removed this summer. (She is doing better, although she is still having

some problems with scarring narrowing the connection inside and bile backing up

in her stomach and causing bleeding.) I mostly just follow these postings,

but am asking for help for a 12 year old boy who was newly diagnosed with EDS.

We live in a small town in North Dakota, and the hematologist who helps my

daughter saw this boy and asked if it would be OK for the boy's mom to talk with

me and my daughter, since we are the only two EDS patients he has ever had.

The hematologist is pretty sure the boy has EDS. He is very flexible and meets

all the positional tests for EDS. He was born prematurely, and when he was a

baby he got large bruises easily just from having blood drawn or IV's. He

gets bruising/blood spots just from wearing elastic, his joints are loose and

ache a lot, his arms come out of joint easily, he has flat feet, he has a lot of

calcium deposits, and he has had two concussions from seemingly minor

injuries. The hematologist here referred them to a geneticist somewhere else,

but I

am not sure if they have gone. I think they belong to some type of religious

sect that keeps to themselves. They do not have a computer or Internet access.

I mailed the mom copies of all the information/articles I had, which she

appreciated, but she wrote me a letter and asked if I would ask this group a few

questions for her son's sake. Her questions are as follows:

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?)

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.

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?

I'll print off any responses and mail them to her, so any help/advice would

be greatly appreciated.

[Guest guest]

Hi ,

There are some good doctors in Kingston who know EDS well who would

be happy to see this fmaily should they move.

His issues do sound liek EDS, but he really needs to see a

geneticist and the rest of the family ought to be seen as well.

Massive bruising is common in classical type EDS as well, so I

wouldn't think VEDS right off the bat with all of the features of

hypermobility and classical he presents with by description.

I hope they find answers!

Keep me posted please!

Jill