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  •   Allergy Superheroes commented on this post about 2 years ago
    So... I haven't written much about this because we're still putting the pieces together, but much of my family's food restrictions are driven by #EhlersDanlos - the connective tissue disorder I share with my boys - even the one I adopted! It's a difficult condition that I promise I'll write about more, and one that's characterized by chronic pain.

    Tonight, we're piled in the minivan on the way to meet a top specialist & pain management doc in Rhode Island, and all the sudden there were...
    So... I haven't written much about this because we're still putting the pieces together, but much of my family's food restrictions are driven by #EhlersDanlos - the connective tissue disorder I share with my boys - even the one I adopted! It's a difficult condition that I promise I'll write about more, and one that's characterized by chronic pain.

    Tonight, we're piled in the minivan on the way to meet a top specialist & pain management doc in Rhode Island, and all the sudden there were both boys, 6 & 11, shading in the body diagrams to show everywhere they have pain.

    Getting a child to articulate chronic pain is hard - and it's half the battle: of trust, of connection, of validation and of getting the medical help they need to heal. Most kids with EDS grow up being dismissed for their ""phantom" pains, and had he gone to most any other family our little boy would have too - just as I did. But seeing his face in focused attention to get the picture just right, I couldn't help but feel like our minivan is suddenly a sacred space.
    More
    • Allergy Superheroes
      He really was fated to be a part of your family, no one else could understand and love him more. We're hoping that answers will be coming to help. THe really was fated to be a part of your family, no one else could understand and love him more. We're hoping that answers will be coming to help. Thank you for expanding your sacred space minivan to our community and we're looking forward to your post and learning more.  More ...
    • Cheryl
      Thanks, you guys - it's an extraordinary thing to be raising two little boys like this. Sometimes it seems like we're raising scientists, too - doing Thanks, you guys - it's an extraordinary thing to be raising two little boys like this. Sometimes it seems like we're raising scientists, too - doing our part to move medical understandings forward!!  More ...
    • Allergy Superheroes
      You never know. Eric and Evan Edwards made their food allergies their college career focus to make the Auvi-Q. Who knows what your two boys will comYou never know. Eric and Evan Edwards made their food allergies their college career focus to make the Auvi-Q. Who knows what your two boys will come up with!  More ...
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