Our child's condition is so rare, we're struggling to find supportive doctors - help!
Our daughter has Moebius Syndrome, and I have to say one of the most frustrating things is finding support and help. It's like when a doctor hears your child has a rare condition they just want to run away it's like no one wants to touch us or come near us because it's too much work. I don't know what to do about it, or how to figure it out. I'm not sure if we should move or what.
When my son was born we were being threatened by almost every doctor we brought him to, they kept telling us they were going to put him in the hospital if he didnt gain weight the way they wanted him to. But we got lucky and we brought.him to my childhood doctor. And i have mobious along with my son so she already knew what was happening with him. Id say call around other places and explaine you experience that u have been having.
I think it's SO important to find a doctor who is flexible, admits that they don't know the answers to everything and is willing to work with you. I hate to say it but those kinds of doctors really are rare. I would call different doctors offices in your surrounding area and try to talk to people. If you can't find an expert then just find someone willing to work with you and try different things. While my child does not have the same condition as your child, I definitely understand that it's a hard process to find support.
The best thing that you can do is to just be an advocate for your child. Find a doctor that's willing to work with you and just try new things.
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