thanks peanut. He basically has "unexplained white matter" that's all I know so far like white dots showing on scan. His whole journey started about 13/14 months tho there were signs before then ( a lot of them really) but he regressed massively then, lost all his speech , play regressed, social regression etc. that's when they went down the autism route the whole epilepsy etc has come as a tangent! He has improved hugely now tho, he's not the same as other x2 year olds but he is appears less different to the untrained observer.
Since we went on medication tho he has developed 100 times more than he ever had. He's still behind but every day he does something a little bit new or better.
Your reply means a lot, may not be the same thing but gives hope that others have been given such scary suggestions too and got through it .
Just had a party at special needs play group. He had great fun, didn't join in, wouldn't eat with them ( faced the wall in corner eating like some sort of Oliver Twist homage!) but he had a great dance and giggle and only a minor me.tdowm at the end xxx
Thanks Anna - these scary situations and trials and tribulations are quite something - huh
I mentioned the myelination as this is often also referred to as the "white matter" in the brain (the other is the "grey matter").
It's so fantastic to ear how well your son is getting on We are going to a special needs play group next week as well and I'm excited