Pediatrician of my 4 year old sending referral for genetic testing…
…particularly for his muscle development. For reference he is fine on everything else health wise but he is a tall, skinny boy like his dad and has frequent leg cramps at night and does not run as well as other kids. This has happened since he could walk.
It will take likely about a year or so to get the appointment but now I am stressed for him and falling into a Google rabbit hole that is NOT helping😅😅😅
Has anyone else gone through something similar?
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We just went to our first genetics appointment. I would call around to other hospitals in your “area” that has a genetics team and see what their wait time is. I called to 4 different hospitals and while the soonest we could get it was 9mo it was better than the 2yr waitlist we were originally on. I know it’s not a perfect solution but there’s a chance you could get seen sooner and having a secondary doctor or your pediatrician call could also help speed things up.
My son got referred as well. Just because they are referred doesn’t mean they will do genetic testing. You meet with a geneticist and they let you know what they think. My son had/has all the symptoms of ehlers Danlos syndrome and she dismissed us. I pushed for the testing but the type I think he has, does not show up on genetic tests. We walked away with hyper mobility spectrum disorder. I wasn’t happy exactly but there’s no cure for this anyways even if he has it and there’s a special test they can do at 5, so I decided to wait till then to go back. You have to really push for what you want with them, I don’t know why she was so against testing when I was paying for it🙄 but goodluck! Hope everything turns out ok!
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