Microcephaly

[used2bthin]

Hi, I have had some info from other threads but thought I'd start tbhis in case anyone sees it who wasn't on the others. DD four and a half has severe specific language impairment as well as a probably unrelated genetic condition and has just had microcephaly added to her growing list of diagnoses.

It seems to just mean small head so I thought not much of it last year when it was mentioned but the paediatrician said it can be associated with learning difficulties so in view of the fact that she has them it may be relevant. She mentioned doing an MRI but seemed unsure as to whether it was worth it.

Any experience of this? Googling is not a good plan I know so I held off for a while but have done it now and apart from scaring me a little there wasn't that much new information to be found.

Our baby son (almost one yr) was diagnosed with microcephaly at about five months and we then had a MRI which showed several 'changes' to his brain, including bilateral perisylvanial polymicrogyria. Since then, he has had OT and PT and also has an NG tube for his feeding. He has a global development delay and while he has made progress, it is slow and he has fallen beind (i.e. from mild to moderate to severe developmental delay). He recently started to trun from back to tummy and tummy to back and to grab for toys, which he can hold for a timy little bit. Am working full time and it's been very hard to find a nany for im. we don't know yet whether it is genetic or sth that happened during pregnancy. The uncertainty as to how he will progress (will he ever walk, will he ever talk) is hard to deal with. And I often think about what may happen to him if he needs to be looked after for the rest of his life and one day we are no longer there to do that.

Thanks all and will look at unique. Calally I think we are not expected to get anything from the genetics stuff. The geneticist said nothing was jumping out at her but she would run it by the whole team with photos of dd as they normally do and test for anything that comes up. Rang again about eeg yesterday despite saying I wouldnt! The secretary said she still hadnt heard back about them but ty not to worry as they ususally would have been in touch if there was anything to report. I had assumed the results hadent been analysed yet so not sure if thats right. Frustrating when I was told up to a month and its now gone past that. And if the eeg shows nothing she will have an mri so not even good news in a way.

Newinhamstead the not knowing is incredibly hard isn't it. Did you find a nanny? There is an agency called SNAP that has nannies who are experienced with children with extra needs whether they are developmental or physical.

I know what you mean about wondering why it happened. In a way if they find a genetic cause for dd's SLI I would be releived as I'd know it was just how it was always going to be. but then we are still waiting for DPs test results on whether he is a carrier for dds other condition so this would be a new genetic worry for future kids so then not good.