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.
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