MRI SCAN/GDD

[ilovesprouts]

hi my little boy has gdd,globel dev delay ,hes has all blood tests ect and come back ok ,he had mri brain scan in feb and was going back for the results in oct ,but i was so worried i rang up today mri scan was fine nothing was picked up ,so going to talk more in oct ,where do i go from here my little boy has never spoke at all just the odd babble etc ,im so upset will he ever talk etc any advice please :(

Hi

Ds had a MRI though his showed some damage so they gave gp dx along with Gdd

ds does not speak yet only noun sounds but this is down to devlopmental verbal dyspraxia along with oral dyspraxia he has just started in a speech unit today with hope that he will talk

paed/neuro not convinced on dx so we have been refered to genectics to see if there is something to tie it all together or he was just unlucky and has lots of seperate issues

Could you ask for referal to genectics,how old is your ds?

Am waiting for ds3 to get home so will pop back later

Hi ilovesprouts (I too love sprouts!) It sounds like you are at the start of the long and winding road towards finding a diagnosis for your son and I really hope you do. GDD seems to be a doctor's catch-all term for 'we haven't got a clue what is wrong with your child'.

My DS is 14 and he still hasn't got a diagnosis, but I believe more and more childen are getting diagnosis thanks to better chromosome tests. When he was little, all his blood tests and MRI were normal, but he obviously isn't as he has severe learning disabilities.

It sounds like the October appointment can't come too soon. I would expect them to refer you to a geneticist if they haven't already, but I hope you have been put in touch with any groups or therapies etc available locally and national groups like Contact-a-Family. 'Unique' is good, even if you don't have a rare chromosome diagnosis.

This SN board is brilliant, so stick with it. I wish, wish, wish it had been around when DS was young. I hope you can do what I didn't do and just enjoy your son for the little boy he is and just love him and play with him like any other child. Finally, but most important, look after yourself.

hi he is 3.9 and hes been to the gene docs all is clear i love him to bits but it breaks my heart that he does not speak !!

My DD is the same, is 3.10, can't speak..her MRI was clear too.

My dd2,3.6,has yet to have a dx.
She is cannot speak,has had numerous blood tests & MRI,which have all come back clear.
We are currently waiting to see a paed neuro,in the hope he can shed some light for us.
She is also very hypermobile.
I think the worst thing for parents without a dx is not knowing what the future holds,will my dd ever live a 'normal' life??
It breaks my heart too,when I see other 3 yr old's chattering away to their parents & friends & our home is so very silent(although not quiet!)So I understand totally what you are saying ilovesprouts.It's very sad & frustrating.

We should keep this as a support thread for all in same boat.

Ilovesprouts

Do you know what kind of chromsome tests they used as have it in very good authority (Friends is a microbiologist) that there's the basic test then there is the indepth where they break each chromsome down into thousands bits of D&A might ve worth checking

Ds is 5 now and myself and the speech unit agree that if ds does not make signifcant progress this year we then start pushing for Acc

all is i know hes had tests for fragile x not seen his doc till oct

ok thats the very basic blood test that they seem to do with any dc with Gdd , ask about seeing a genectist where there carry out more indepth tests

wehave seen the gene doc too she did the tests etc

what tests did she do , chromsome ones? where abouts was she from?

im not quite sure as was a long time ago shes based in leeds but came to our local cdu

ah so sound slike was gentics might be worth asking for copy of report see how they tested and what for

Also have they talked baout verbal or oral dyspraxia the other option is talk to Ican they were fnatstic and gave me so much help and advice

Im going to be unpopular when we go as will me making sure they do microarray testing as know more through , though will wait see what they suggest first then drop in what i know and want

Hi my dd is 4.4 and has development delay and oral dyspraxia.
She has never had any tests at all as no one has ever mentioned it.
She now has about 6 words she can say thankfully mum is one of them she has been saying it for a few months now but it still makes me so proud when I hear her call me.
Can never imagine her being able to use a whole sentance.

Its hard having no dx must admit its why I started looking on mnet as you feel so alone with it all.
Im sure all our dc will talk eventually its hard waiting though isnt it.

ilovesprouts
Just want to pop in and say hi. My DD 2.8 has same undiagnosed GDD. She is not speaking at all.

She has had all the Genetic tests which so far have showed up nothing yet. We also had MRI - it showed up that she has generally less white matter. However it is still considered within normal limits. BUt they feel it explains the delays....slightly confusing really.

We have her next multi disciplinary in October. I have no idea about diagnosis really.

Its so hard and if its any consolation I understand why you are upset.

They cant tell us how things will progress. It is really helpful speaking to people in the same boat......

I have also been told that there is a new type of genetic test which is part of study in cambridge at the end of this year.....however we have been warned that the results may not provide us with the answers that we are looking for.....Its all a bit over my head.

Thank you for starting this thread x

It's good to hear from other parents with the same problems,as with an un-dx'd dc you feel so alone
No-one can give us any answers as to why dd has these problems & I think they use GDD,as a coverall,when they cannot find anything else!
Every appt you hope for something but it seems I am left in limbo each time.
This is a great thread,lets keep it going!!

bump :)