Re: lost with little help
Posted by Mary on 10/7/2008, 2:48 pm, in reply to "Re: lost with little help"
My son recently got diagnosed at age 8 by the genetics department at the Children's Hospital. However, I was just sent home with an information sheet, told I was lucky he had a syndrome and not a disease, and told to have my regular pediatrician follow up on getting a cardiac ultrasound. I was devastated that there was no formal ED clinic or any formal follow-up. Try to get a referral to genetics and hopefully, your children's hospital will be better than mine. |
: I have been doing a lot of
: information gathering for myself
: since being diagnosed with type III
: Hypermobility EDS 8 months ago. My
: diagnosis would not have been
: confirmed had I not seen the
: genetics dept at North York General
: in Toronto. I was given the
: doctor's name by Jill at CEDA. The
: medical staff are terrific and I
: found the whole experience the most
: confirming and liberating experience
: I've had yet. Imagine - I've had
: these severe problems all of my life
: and I get diagnosed at 54!!
: I realize it's your child you're
: talking about, but I still suggest
: that you obtain a medical referral
: to the genetics department. I saw
: Dr. Anne M. Summers, Chief and
: Medical Director. I think the
: doctor that is the EDS expert is Dr.
: Wendy Meschino.
: I don't know where you are, so
: Toronto may not be possible, but I'd
: certainly suggest a geneticist who
: can arrange for further tests.
: I also suggest you log onto ednf.org
: - the American website for
: Ehlers-Danlos. They have lots of
: information about children with EDS,
: including a great booklet for
: parents and teachers so that a child
: may be dealt with properly at
: school. I think this is very
: important and I never had such a
: thing. Both my shoulders dislocate
: regularly and I was forced to climb
: ropes. I cried and they still made
: me do it.
: Again, I realize you're talking
: about a different type and you're
: talking about a young child, but I
: think if you can get in touch with
: someone who knows and understands
: what's going on with your child,
: you'll feel like you're progressing.
: I will keep track of the responses
: here. If I can help you further,
: please respond here and I'll check
: back to see if I can help some more.
: --Previous Message--
: My son age 3, was recently named as
: having Type 1/ 2 EDS by a pediatric
: dermatologist...I got little info.
: from her and instead have been doing
: my own research but I have so many
: unanswered questions. He has not
: been "formally" tested.
: How do I make his happen? What is
: the process? We can not find a link
: in the family but perhaps it is so
: mild it has gone unoticed in the
: past? If you have any advice I would
: really appreciate it. Thanks so