I was talking about this on another thread - I’ve yet to talk to anyone who’s child had a big developmental regression (his was at 18 months, he’s now 24 months) without any obvious cause. He’s being assessed for all sorts of things at the moment but I don’t know what to think. This is a summary I wrote of the situation. If anyone has experienced anything like this it would be really helpful to know how things progressed for you.
*The twins were born 5 weeks early by emcs because he had IUGR and stopped moving. Within a week or two he was diagnosed with something called hyperinsulinism. Spent two months in nicu getting it under control with medication and he rarely had hypoglycaemia after that. He was under OT due to low birth weight but they were really pleased with his development and said he was even ahead in some areas.
Around 16 months old they took him in to hospital to do a controlled fast and they found that his insulin levels were now normal so he could come off his medication, but his blood sugars still drop if he doesn’t eat regularly so we manage it with food.
At 17 months he started walking and the OT discharged him.
One day he was sitting as normal playing with his shape sorter (a complicated one, about 12 shapes and he knew where they all went).
The next day he just walked up and down, spinning, chewing on stuff. He hasn’t independently played with a toy since. All he does is run around and chew stuff, eat things he shouldn’t, pick up anything he can find and try to eat it.
He has a squint and I thought maybe that was related so he saw an ophthalmologist. They diagnosed something called Optic Nerve Hypoplasia which means his optic nerves haven’t fully developed. But that would have been from birth so wouldn’t cause a regression. They did an MRI to rule out a related neurological and endocrine condition which he doesn’t have. They did find a specific type of brain damage but it’s mild and again would have happened neonatally so they’re saying it couldn’t cause this regression.
He’s now seen child development - they’re running more tests for metabolic and genetic disorders but I haven’t heard of anything that causes regression like this. I know regression is a red flag for autism but again I haven’t spoken to anyone who’s experienced anything like this.
There were no injuries, no vaccines, nothing like that around the time of the regression. The only change was coming off the medication he had been on from a young age but they insist it can’t be related.
I have no idea what’s going on. I don’t know if it’s going to get worse or better, or if he is going to get those skills back. We don’t know how much his vision is affected until he can talk, and I don’t know if he will. Basically, I’m shitting myself at this point.*