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will they test for causes of gdd?

(8 Posts)
gemcorey Thu 30-Jun-11 19:08:28

hi my 3 yr old is in process of being diagnosed with gdd, will they tell us the cause - the paed said they cant be specific about what causes it. how do you get them to run tests - eveyone seems to be sayn they can do genetic tests etc. also does he qualify for dla??

1980Sport Thu 30-Jun-11 21:39:42

Hi - the Paed should be testing for different causes of your LO's GDD as a matter of course without you having to ask! Has he/she had no tests at all? Has a genetic cause been suggesting. There can be many different causes and but unfortunately in some cases a cause can not be found!

You may be able to claim DLA - the Cerebra guide is very good. There are three levels and it depends on the additional care your child needs in comparison to an NT child of the same age. A rough guide is a little extra care during the day equals lower, a lot of extra care during the day equals middle and a lot during the day and through the night equals higher.

angelPeacock Thu 30-Jun-11 23:15:04

Hi, i have a friend whos 4 year old daughter has GDD and i know shes had genetic tests and an MRI. not sure what else shes had, but she spoke to a specialist who explained it better for her and now she knows there is no definate answer for her but kinda gets it at the same time. i know this isnt much help but im sure they will investigate at least possible causes.
good luck with the DX and hope you get some answers xx

TheNinjaGooseIsOnAMission Fri 01-Jul-11 06:41:35

ime we had to push for testing to find out the cause, it wasn't offered, polite but firm is the way to go. What testing you want really depends on what you think the cause may be, they may not be able to tell you but they should only be saying that after they have run some tests, whether that be genetics, mri, asd assessment or something else. The problem with gdd is that it's more of a catch all descriptive term that's used rather than a dx, often dcs will later get a dx of something more specific.

dla is based on need not dx so as 1980 said, your dc will qualify for dla if he has higher care needs compared to other children of the same age. You can download the cerebra guide here

gemcorey Fri 01-Jul-11 18:10:38

hi all thank you for youre advice. sounds like dla worth tryn for - he is 4 in august but paeds assesment said he is at level of 2 and half. will def push for testn - when she said its gdd i asked if it was my pregnancy as evything that could go wrong did and she just say that it could be but what they dont know what cause is and didnt even say they can do mri's n genetic tests. we think it prob was the pregnancy but it would just b nice to know especialy as several of his cousins have learning needs as it may b that perhaps its genetic. will keep you posted on how it goes. x

singforsupper Fri 01-Jul-11 18:24:27

Hi gemcorey
Do push for the tests - genetic testing shouldn't take too long. They will sit on the fence for as long as possible because they won't want to tell you the wrong thing. My dd was diagnosed with a horrendous disorder before the tests were in, resulting in major panic on my side, and very embarrassed doctors later on. They should have asked you lots of questions about your pregnancy - medications you were on, trauma that you may have had - these can be a cause of gdd. Whatever has caused the delay, early intervention makes a huge difference so start doing what you can now. Lots of stimulation, no telly, lots of speaking and listening.

What are ds's needs at the moment?

1980Sport Fri 01-Jul-11 21:41:20

Definitely do push for tests!! The delay with my DS was first noticed at about 6 months we eventually seen the Paed at 10/11 months. They began by running blood tests for all the very common causes, then did his MRI scan, then ran some genetic tests for rarer genetic causes of GDD and now he's having ongoing tests for very very rare genetic conditions! I had a very difficult labour with DS ending with quite a traumatic forceps delivery which we all assumed was the cause of his GDD - this wasn't the case!

Our Paed consistently said my DS had no specific 'look' of a genetic condition but with in minutes of meeting the geneticist he had pointed out numerous genetic indicators so do push to see a Geneticist even if its just to rule this avenue of testing out. Good luck, let us know how you get on!

ilovesprouts Sat 02-Jul-11 20:20:06

my son whos 4.7 has gdd he gets dla also had lots of tests we are just waiting for more tests now still no dx tho

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