Global Developmental Delay Support for mums

**naomis mum** · 23-03-2009 16:44

um....yes i think she is on the spectrum. i think this is because of her metabolic brain disease though...that is my theory anyway and i am sticking to it lol. she is interactive on her own terms, but has alot of the autism traits...its hard to explain. she doesnt have angelmans, she has GLUT1 DS.

**MeagsnEva** · 23-03-2009 16:50

Just pointing out my own theory that sometimes autism is caused by other diagnosis' but then I suppose they dont knwoo what causes autism anyway hey?
Have you "met" any other parents of kids with GLUT1 DS ?

**naomis mum** · 23-03-2009 16:53

no. its all new dx to me. i have only met parents online. it is very rare only a few 100 in world.... a few in qld. one in syd and one in melb....why? i think that the glut1 ds causes autism in naomi. that my theory too. lol

**MeagsnEva** · 25-03-2009 16:03

Does anyone know how to start a new forum on bub hub?
I think if you were a mum that has just been told that her little one has GDD you might not want to look under special needs - I knwo I didnt - I was terrified!
If there was one on the main page people might tend to look more???
What do you think?
Ive treid even to find someone out of the moderators to ask this question?
Maybe if i swear & make inappropriate comments

Just kidding....

**~BEXTER~** · 30-03-2009 19:07

Hi my daughter is now 4 and has mod over all delay.

as to where i turn to for help, there is none for me apart from this site.

in the 3 years i have been concerned we have been to 100 gp's, 2 pead, 2 speech therapist 1 occutional therpist and a assessment team

all to be told she's fine theres nothing wrong with her
granted she is getting a lot better now and 8 months ago started talking.

but until she was diagnosed there was NO support no one to turn to for help, advice anything (apart from bubhub)

i went to our now old pead and broke down asking for help to be sent somewhere so i could learn how to conrtol, how to cope and what i can do different to make life easier for my daughter and myself.
his reply was she is to old

so i got up and left, this was after 2 years of being told she is fine and not doing any test and not refering her ANYWHERE

we are still on the i dont know page and still struggling but she is getting better and it no thanks to the doctors

so i think a web site for advice or a chat or links to other pages where they might be able to get help is great, espically for young parents i have been going through this since i was 20 and i think the main reason i havent got much help is because all the doctors talk to me like in just another young mum who can not handle a tantrum, which is crap

so best of luck

**LivinOnAPrayer** · 30-03-2009 20:08

great idea. i have to say ive been very nieve about alex's gdd. she'll be 3 in july. she doesnt speak, isnt very steady on her feet and has a lot of medical issues. shes deffinatly getting better though, her balance has improved, shes babbling a lot more and seems to understand heaps more. its hard when all the other alost 3y/o's are running, jumping, talking and playing, and alex is just sitting there watching, like she doesnt fit in. she doesnt, never has really. that hurts

**learmond** · 30-03-2009 23:09

My daughter has just been diagnosed with mod to severe global developmental delay due to sickness.
I would be most interested in this website as well, as I don't know anyone else with children with this.
Keep us updated.

**kiwibird27** · 31-03-2009 07:53

Originally Posted by learmond

My daughter has just been diagnosed with mod to severe global developmental delay due to sickness.
I would be most interested in this website as well, as I don't know anyone else with children with this.
Keep us updated.

Megan is mod to severe too!!!!! She has a rare metabolic condition known as Congenital disorder of Glycosylation 1a.
A website 4 special needs is good but I do belong to a really good American one.. I only jump in there for medical ideas though otherwise it's a bit over whelming talking about disabilities all the time.. it drain's you!!! Great for support but sometimes I just wanna talk about slow cookers and wine!!!!

**naomis mum** · 31-03-2009 12:56

speaking about slow cookers and wine stacey....YUM. you should so do a roast this week in your slow cooker...super easy..put it all in and turn it on to cook all day long! YUM. then have a nice glass of RED while eating it!!! xxx