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When dealing with a number of conditions/comorbidities, do you find one doctor or many? If the latter, how to get them all to communicate? Thoughts?

I am the parent of a teen suffering from a number of conditions the initial of which was/is NDPH. I believe we're at a crossroad in her care and am thinking about how to proceed. Right now, we have a number of doctors - none that I'm thrilled about for various reasons and none are necessarily specialists in her specific disorder(s). Based on your experience, would you recommend seeing specialists for her individual conditions, going to an inpatient program to try to deal with all conditions holistically, or some other model?


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#CheckInWithMe Parents of kids with #RareDiseases

Let me know how you are doing! Life gets crazy busy caring for our kids that we often forget to check in with ourselves.

Personally, I am exhausted. Between my oldest daughter's schedule and making sure my youngest gets in PT, OT, and Speech Therapywith us at home in addition to her actual therapy appointments makes for a long day after work.

#tellushowyouaredoing #SpecialNeedsParenting #ParentAdvocacy #rarediseasewarriors #RareDiseaseParenting

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