TIL about childhood dementia. It is a result of progressive brain damage and can be caused by over 70 rare genetic disorders. 700,000 children are estimated to be living with some form of childhood dementia today. 48,300 children die from childhood dementia each year.
childhooddementia.orgSubmitted by GremlinBandit t3_xzdz21 in todayilearned
LorenzoStomp t1_irn4ucz wrote
I did in-home care for a kid with mucopolysaccharidosis III aka Sanfilippo. He was misdiagnosed with PDD-NOS/atypical autism for most of his life, because even though it's a simple pee test to diagnose it's so rare no one thought to do it until he started declining severely in late adolescence. Someone might have caught on sooner if any of his siblings had also had it but somehow he was the only one of 8 kids (with a 1 in 4 chance) to inherit the gene defect from both parents.
His parents were able to keep him at home for most of his life except for 2 years when he had to go to a group home because they weren't able to find another carer for him after I herniated a disc in my back (he could be extremely aggressive and his parents were older/had physical disabilities). When he aged out of children's services at 21 his mom really hustled to get funding and arrange 24/7 care for him at home and his dad built onto their house to make an apartment for him. I was able to come back as support staff for his last year and a half at home. We worked to keep him as active and functional (and entertained) as possible but his CNS slowly degraded and he finally couldn't swallow at all. An abdominal port for a feeding tube wasn't an option (he would've had to have been either heavily sedated or physically restrained at all times to keep him from messing with it) so his parents decided to enter him into hospice where he was kept comatose until he passed of dehydration. It was rough but a lot quicker than what some kids get, spending years bedbound before passing.