Just want some real advice of people who's dealing/delt with this syndrome ?
Some positives. What you do or find help best with your DC? Activities that help. Do you get extra suppport for your child at school? How do you cope in general. Just 101 million questions I have an don't know where to go
Sept last year my DS has a huge seizure, came from no we're and since then he's developed a few types of epilepsy, seen his consultant a few weeks ago and he said he's now convinced it's dose syndrome as he is resistant to drugs and he has- simple terms- hypo mobility were his body is just floppy? I'm not 100% sure on the medical term my heads abit like watery mash atm! Been such a crazyyyy few months. Just welcomed a beautiful DS aswel as this recent diagnosis and a little girl stuck in the middle
His development is so behindI know they say don't compare kids but he doesn't listen, his feet have now started to turn in when he's walking, when you pick him up unlike other kids he doesn't put his legs around you etc he's very floppy, his speech is very basic and minimum and he doesn't seem to want to try with things, he can't follow instructions but his DS who's 14 months younger is way past him in regards to development an understanding of things etc. Also he becomes very obsessive over things, atm it's purple bikes ? I just don't know how I can help him anymore. I can't help but sit an cry watching him whilst he sleeps. He's my baby boy and I feel helpless ? He won't sit down An do activities with me to help him etc iv tried all kinds. Had all health professionals come to visit to give me advice an they've not been in the situation to know So I need some proper parenting advice or whatever on this subject.
Most difficult thing ever !
Thank you all x