Dwarfism

[RiffRaffMama]

I found out today that my baby is possibly a dwarf. I have a tertiary ultrasound next week to help rule it in or out for sure but I was hoping there'd be some mums on here with experience raising kids with dwarfism. I'm just looking for advice on everyday kind of things like what special furniture do you have and that sort of thing.
Thanks :)

[lotheryn]

Hi,

I have NO experience myself - but our best-friend's bubba wasn't diagnosed until she was born (day 5 actually) - and all I know is that they are coping REALLY well (they are actually amazing) - and that once the diagnosis came through they have been given AMAZING support, they attend a group for parents/kids who have dwarfism, physio +++ as required (their little girl had a bit of trouble with her left arm)...

I had no idea there was the support out there for them... but they seem to have everything they need - and any questions are easily answered.

I don't think that they had to change any of their plans etc... she is now 9 months old, and apparently her kind of dwarfism means she will develop functionally a little slower than standard (but nothing wrong cognitively)... The only thing they are thinking about is eventually moving - they has about 30steps to get into the main house, and are worried she won't be able to get up them!:ecomcity:

[serendipity22]

I was a very late developer and was small for my age but grew up to an above average height.

I think dwarfism is very rare, less than 1/25,000. Why do they think its dwarfism?

[Nowhere]

Hey

My dd has a form of dwarfism, she is growth hormone deficient, and has Russel silver like syndrome, Basicly means all issues of RSS but not the gene type.

I think alot depends on the type of short dwarfism there is the most come one I forget the name of that starts with a A they have the short limbs and averge size body then you have the primordial ones that are tinny all over from birth and the GHD ones and the RSS ones like DD they are also a type of primordial dwarf but are not as small as type one and two primordial, but they are also small all over and also stugle to put weight on as well.

I dont know much about the other types of dwarfism, but i know with DD her size doesnt bother her neally as much as her size bothers other, She is tinny ( getting biger now with nedles and TPN) at one she was stil wearing prem clothes at 3 years olf she ws 7.9 kilos and 80 cm, that was when she started GHT and is now nealy 5 and is 92 cm and a masive 12 kilos she has other issues to do with growth that most forms or dwafism dont have.


if you have any specific questions feel free to ask away and if you want to chat feel free to pm me