Global Developmental Delay

[ShrimpOnTheBarbie]

I have the most gorgeous baby girl who has just been 'diagnosed' with this and am feeling a little lost and unsure as to what this actually means for her. The team that are treating her are lovely but I feel very much left out in the dark and palmed off with platitudes and a google search has left me confused and extremely worried.

At this stage the paed has ordered a range of tests and will see her again when she is 12 months (in Oct) and we are meeting with the development team (physio, OT and speech pathologist) at our local hospital once a week.

I was just wondering if anyone has a child who has been labelled with global developmental delay felt like a chat with regards to how their baby/child is developing and what it has actually meant with regards to their future.

Hi, Shrimp, you've come to a good place here - lots of people with lots of experiences and advice.

What symptoms is your dd showing, if you don't mind telling?

Our dd2 was said to have GDD, as a cover-all until she had grown enough for them to be able to pinpoint the actual problems.

Sounds like you are getting good early intervention with the Physio, ot etc. Did you really mean speech pathologist or speech therapist?

How old is your gorgeous baby?

What milestones has she not met?

My DS was originally dx with Mild Development Delay - but this ds was removed later (and replaced with other things).

another one here whose dd3 started off with a gdd label. It seems to be the catch all of, has issues of which dc may grow out of, turn out to be nothing much or may later be dx with something definite when they have found the cause. Sounds like you are getting the available therapies which is a good thing

Hi our little boy also started off with the gdd label until he was later diagnosed. Early intervention with therapies is great, and it meant when he was finally diagnosed with his condition everyone was in place and he had already had a lot of helpful input.

Ditto - GDD to start to cover all bases. On the plus side early intervention leads to 'better' outcomes, and you've started the ball rolling already.

Another with GDD. DD2 is now 3.3yrs and was dx'd at 9 months. Lots of therapy in the early years is key.

DD2's profile is patchy. Gross motor is the big delay for us, the rest not too awful and cognitively reasonable.

As others have said GDD is a very vague dx, it just covers everything.

we got the gdd dx when ds was 3.5 it is a very broad category. My dx for ds now nearly five would be autism plus learning difficulties and dyspraxia.

he is still my gorgeous little boy. he has learnt to use a scooter and months on my heart still fills with pride at seeing him scoot down the street.

Thank you so much for all your replies. I am in Aus, so apologies for going quiet just after posting this but I was in bed.

DD is 11 months. I took her to the community health centre at about 7 months as she wasn't sitting (and she was refusing to eat solids). She was also not picking anything up or putting things in her mouth. She had rolled once or twice but didn't roll. The health centre referred her to the development team and they have referred us to a paed. We have seen some progress (she found her feet in the last week, and has just started sitting for a few seconds at a time, unaided).

TheCrunchyside - congratulations on your little boy learning to scoot!

Good news about the progress.

My boy didn't sit until about 10 months. And actually he has dyspraxia not development delay. But his dyspraxia is very mild and no one besides a professional would notice it.

So hopefully, your daughter will continue to make progress and with the support of occupational therapy you'll be able to get her to a point where no one but you notices anything :)

And in the mean time - we're all here for you. So keep posting.

Thank you. I have days when I'm so hopeful that she just got a little stuck and now is progressing well and then on other days it feels like we are just not getting anywhere. I think I'm feeling particularly wobbly atm as I am planning her first birthday party and when this all started I had hoped she would have caught up by now. I think I may have had my head in the sand a little.

Hi Shrimp, my DS is 22 months old now and hasn't been diagnosed with anything yet (seeing paed for the first time next week). However, he sounds very similar to your DD - didn't sit independently until 2 months off a year, bum shuffled at 15 months and only started weight baring in the last few weeks. He also never ate solids until 11 months and didn't put anything in his mouth. I keep veering between "Oh, he's just a bit slow" to thinking there's something wrong with him (he has quite a few ASD traits). However, he is progressing, just slower than other kids (babbles a lot, but not many words). It is very worrying when you don't know what the future holds (I have my head in the sand a bit too ) but it is great that you have a good team treating your DD and that she has had such early intervention.

Hi Shrimp, my ds now 5yrs has a general developmental delay aftering all areas. In our case a brain scan revealed it was due to brain injury.

He has come on really well, but it has taken some hard work.

My only advice to you is to stimulate her everyday (hope that doesn't sound patronising, but I don't do it with my nt son), and find time to practice the exercises the professionals show you. It's the only way.

Hi. Alongside Mojo's comment, try and enjoy your gorgeous baby as much as possible - despite the worries hanging over you - and just be playful with her - in itself the best stimulation. I got bogged down with therapies and felt very guilty I wasn't doing them enough, mainly because I was miserable and needed help myself. If only I could go back in time, I'd just treat him my DS like a regular baby and have fun with him. I found the first few years of his life utterly miserable and very 'medical model', i.e., hospital/therapy-based, and I forgot he was just my little baby.

GDD is such a vague, catch-all term and the waiting game of trying to find out what - if anything - is wrong is so hard. My DS is 14 and still has no diagnosis. His GDD was very obvious when he was little and he took years to walk, talk and still has severe disabilities. Other children with the same dx are very able. It doesn't tell you much unfortunately, so bear with the doctors and their tests. Good luck

Thank you. DD is just lovely and I do enjoy her so much.

I think the what ifs and questions are the hardest part. My elder DD never followed a timeline developmentally (she is way ahead) so I've never really bothered with the 'what when', and am used to people questioning me as to the age of my child. Of course the surprise I see in their eyes is slightly different this time around but it makes neither daughter any less special or perfect to DH and I.

My worry is more about later down the road. I worry about how her life will be and whether she will need care forever.

Oh Shrimp,
Really don't let this thing get out of proportion , my son ,has gdd too he's 3yrs now and I started to pursue the probs he has around a year an half ago .
Push hard as you can ,with all those official bods out there ,(GP,Lighthouse consultants,Nursary,all that you are doing is all that you can do hunny.
It's so early to say ,how she will progress ,babies do have so much talent ,my son is always changing almost week on week .Come September when he will start school,I can honestly say I have NO IDEA! Where his levels will be.
The last 4wks have brought sentences of more than three words,his behaviour is still not the same as his age group and he will need support ,I feel up an down all the time ,but also he's my baby boy and all this stressing I've realised ,takes up too much time ,it's much better to do all the necessary ,but then leave it alone an enjoy your cute little girl as she is,as she see the world ,her reality is no different, jus because ,the label exists ,doesn't mean she's any different today than the day she was born. X x an also if she needs help later ,when later comes you , her mother ,will!!!!! Obviously ,give her all that she may or may not need ... As with your other kids too .ps my mums response to this issue ,(hope you find funny )
"Well ,your kidding yourself if you think your jobs done when they leave home .Kids are a life time job you don't stop being the mum till the day you die.
An if that's what your worried about then you best get your head down an graft harder than ever to be sure you can provide what's needed ". Wise and blunt .brutal but clear .;-)))
H

Dd2 was gdd from birth, and was dx with cerebral palsy just before she was 2. She's 9 now and goes to mainstream school, girl guides, ballet, and has today earned her 'black runner' skiing certificate by skiing over ten different black runs with her instructor.

The first two years were pretty horrific, I'm not going to lie. Appointments everywhere.

I used to say that I just wanted a crustal ball, so that I could see what she would be like when she was 5, then I could get my head round the future. Of course, when she was 5, I wanted to see her at 10, and now she is almost 10, I want my crystal ball to show me her as a late teen - will she be able to drive? Will she be in relationships? Is she going to be a mother?

I found the learning disability question v hard to contemplate - as it is, she doesn't have any ld's, but there was no way of knowing that so early. In fact, she has the highest iq out of all three of mine (all carry 'gifted' labels) Gdd doesn't at this point necessarily mean lifelong care. It might mean a 9yo who intends to be the next Chief Justice, despite her disabilities.

All you can do is keep on keeping on, and be kind to yourself along the way. Life would be simpler if we knew what was ahead, but it doesn't work that way.

Do you have the equivalent of portage in Aus?

My DD was dxd with GDD at 7mo. Has since been replaced by a host of other diagnoses, which will probably soon be superseded by the diagnosis she SHOULD actually have.

To help you see what it can mean for the future :

My DD is now 15yo. She is in Mainstream school with extra support. She is working at a level above life skills courses, but her GCSE predicted grades (after a lot of support) are D-U depending on subject.

She can run, walk, talk, skip, climb trees, ride a bike, tie her laces, cook gorgeous cakes, wash up, tidy her room not that she likes to, sort clothes for washing, go to the shops (after lots of teaching and with a very clear list), and much more.

She DOES still have issues - her speech still has some mispronunciations, she can't manage transport changes like getting on a bus and then a train to get somewhere, she still has meltdowns, she still needs a LOT of help organising herself, I don't think she will be able to live independently before at least 25, we are struggling to sort out college post-16.

There's pluses and minuses!

But she is still my DD, and I love her for who she is.

Though the glorious cakes help...

Zombie thread . Perhaps shrimp will come back and tell us how her dd is doing nearly three years on

Zombie thread . Perhaps shrimp will come back and tell us how her dd is doing nearly three years on