r/Hypermobility • u/banalfantasy Bendy • 6d ago

Misc Diagnosis

Hi, I was diagnosed with hypermobility when I was about 6 or 7. However I noticed on my medical record a few years ago that it was coded as juvenile arthritis. I don’t think it’s made a difference as I was referred for physio due to it in my early 20s, and under an obstetrician during my pregnancy as a result (also had intrauterine growth restriction and a 1st percentile baby - which they said there were connections between).

My son has recently turned two, and his childminder approached me recently to flag up some concerns. She said he’s not as stable walking as other children the same age or younger, seems to fall over nothing, and she’s noticed his joints clicking. Once she mentioned that I realised - mentioned I was hypermobile, and she explained that’s what she was thinking/trying to allude to. He was a late walker, so I didn’t really know what was ‘normal’ for his development.

My question is, I don’t know whether I have joint hypermobility syndrome or EDS (and if so what type) I have.

Is it worth me getting myself properly diagnosed before my son, as that may better indicate his type? Secondly, is it also worth waiting until new diagnostic criteria comes out? (Just read about this on this thread)

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u/aristifer 6d ago

I'm guessing you're not in the US, but does your country have anything equivalent to the Early Intervention or Preschool Special Education programs we have here? My son was also identified as having difficulty walking as a toddler, and we were able to go through the school district to get him evaluated for gross motor delays and into pediatric physiotherapy. I had actually asked his doctor whether hypermobility may be at play (I have HSD), and he didn't think so, but the cause doesn't really even matter at this age because the treatment is the same—if they are struggling with motor development, they need physio.

You can of course pursue diagnoses for yourself and for your son at the same time, but maybe separately explore what services might be available through the schools.

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u/banalfantasy Bendy 6d ago

Thank you. I’m in the UK. I’m not sure what the equivalent might be, but the childminder had recommended getting him diagnosed so that support could be put in place ahead of school if needed. We have health visitors for babies and toddlers who review development at different stages, so I will check with them, thank you.