Posting here for traffic as I know it’s rare.
My twins (4) are both diagnosed with autism, one has had quite a complex medical history and so he’s had an awful lot of testing to try and establish if there’s an underlying cause to the various issues he has. Everything had come up clear so far.
Just got a letter yesterday saying that his MPS urine test was “slightly elevated” and therefore inconclusive so should be repeated. I remember looking up MPS and reading through all the types when they booked this test and thinking none of them sounded like him, but now I’m looking again and realising it could be MPS III which does not have a good prognosis and now I’m feeling anxious. Seems it’s quite common for this to be misdiagnosed as ASD initially, plus there are other things in the early signs and symptoms which fit.
The result really was only slightly out of range (17, when normal range for his age is under 14) but it’s difficult to get a concentrated urine sample from him as he drinks a lot, so it’s possible the sample was too dilute.
I don’t know what a clearly positive result would be (maybe it’s in the hundreds or thousands, or maybe it’s 20). I’ve emailed his paediatrician to ask for more info and for when the test can be redone.
I’m really trying to stay calm about this. Is there anyone out there who knows much about this?
I don’t feel like I can talk to anyone about this in real life until I know more.