Hi everyone, I'll try and keep this short.

My son (who will be 4 on wednesday) and I have been diagnosed with Ehlers Danlos Syndrome, orthostatic intolerance, and chronic fatigue.

My son has IgE and non IgE allergies and is suspected as having eosinophilic esophagitis as well.  We nursed for 35 months on a strict elimination diet.  Currently his diet consists of 6-8 safe foods.  

The onset of his pain and fatigue started days after we weaned and in conjunction with specific food trials. My son has had one episode of anaphylaxis in which I had to inject him with epinephrine however the trigger is still unknown.  

Thanks to informative forums like this one we're beginning to look down the MCAD path. I sent Dr. Afrin an email last week and although he's interested in our case he does not see pediatric patients.  This past July I submitted some paperwork to Akins/ Castells but never heard back from them.  I followed up with a phone call the other day and am anxiously awaiting a call back to see if we can set up an evaluation.  In the meantime I'm logging everything I can in hopes of finding patterns and triggers to make my son's life as comfortable as possible.  

Nice to meet you all,
Tina

Tina, you also might want to get on the forum at dinet.org.  There are several moms with kids with connective tissue disorders (mainly EDS), POTs, and Mast cell issues.  That might be a good resource for finding some pediatric doctors who can help.  I think I recall a few of the kids going to John Hopkins and had some success.  

Good luck!