Anyones dc had amino and organic acid testing..and if so.....

[bizzey]

...what happened if they came back "positive"...?

Ds3 is still undergoing ...well loads of investigation for things ...but focusing at the moment on developmental/educational ?delay..or seriously behind .

He is 8 yrs having 1-1 at school and extra external support ...but not making progress. He is being refered for a MRI as well and Ed psyc (at last !!)

Got all this news today and head is in a bit of a spin .

Would be really grateful for some honest advice even if it is bad...
Thanks .

I am still shifting my DLA form from one side of the table to the other as well !!!...Way passed my date to send it back for ...but I think that is only for the back payment ?

My problem is the "other person who knows your child"bit ..I have lots of professionals who have "met" him ....but know him is different !.my brother has said he will do it ...(he is dxed and has a DLA himself for mobililty props and very "literate ..."...?knows his spelling and grammar !!).My brother will write what I need but ...does it make a difference to have one or not ?

Hi bizzey

My three have all had organic acid testing. It was a urine test though. Ds1 because the geneticist put two and two together and correctly guessed which acid it would be and the twins were tested at birth because their older brother was positive. All three have the same metabolic problem.

I think that doctors run these tests because they are cheap and easy, compared to gene testing and you never know what information they may bring to light that can help with finding a diagnosis and so point towards which gene mutations they can test for. A few metabolic disorders can be improved by dietary changes, so it is worth knowing if you are one of the lucky ones.

Ds tested positive for a certain organic acid nearly 3 years ago and we are still trying to narrow down what the diagnosis is for the dcs. At the moment they are part of a study. So far it has helped knowing about this as it has given us a list of things to keep an eye on and catch medical issues early so we can get the best possible outcome.

Hope you get some answers. If it is positive, pm me and I can put you in the direction of a Facebook support group if you're into that sort of thing.

I didn't bother with that bit, tbh. It's not essential, and I think that maybe my DS2 is just too young to have anyone other than me or his dad 'know' him well, especially as he can't even go to toddler groups etc.