Anyone Heard of Microcephaly

[kimcam]

Hi To All,

I have an 18 month DD I took her to the pead in October and he has diagnosed DD with microcephaly. Does anyone know what Microcephaly is? What tests can be done? The Pead was suggesting to have genetic testing as I have a small head too. The pead also said that DD can end up having a Learning Disability or other developmental disabilities.

Any advice would be much apprectiated.

Kim

[sam's mum]

:hugs:

I haven't heard anything helpful, but I hope that you are able to get the support and assistance that you need.

[veve]

hi

I have come across one student with microcephaly in my teacher years to date - but he was a very severe case, with minimal hearing, sight and intellectual ability ... I dont really know much about the different levels that children can reach with this condition....

Has your DD reached many of her milestones??? I googled the term - and tried to find you a support group - this website here - http://www.agsa-geneticsupport.org.au/support has a link to a microcephaly area, with an email contact .. I really hope they can put you in touch with some other parents :hugs:

Stick around, bubhub has lots of parents with special children :yes: :hugs:
xx
Jen

[Loopy Linda]

hi,

i don't know a real lot about microcephaly, but my son had hydrocephaly...sort of a link there. how are you doing with it?

my son is also likely to have learning / development delays. how is your daughter doing?

where abouts are you? has she seen a nuerologist? have you been referred to one? if you would like to talk a little more you are welcome to pm me, or put it here and i will check back.

hugs to you and your family

[kiwibird27]

It just means a small head, If u have one too then probably it's just normal. It can be a symptom of lots of different disorders but can also just mean she has a small head, as long as it grows it should be fine. Paeds find lots of things out about children, often it amounts to nothing!!!

Good luck

[kimcam]

Hi All,

Thank you for your replies. I have not got any testing for DD yet. Does anyone know of a pead neurosurgeon at Westmead. I am seeing the pead in April so will find out more info then.

Kim

[Loopy Linda]

sorry, we are with paed nuerosurgeon at randwick

[Loopy Linda]

sorry another thought, why are you going to see nuerosurgeon?

[kimcam]

Hi TO ALL,

Thanks for you replies. This reason I am thinking of seeing a neurosurgeon was to see if in fact DD has microcephaly and whether their is enough room in her head for the brain to grow.

What neurosurgeon are their at POW hospital.

Kim
DH
DD - 19 months

[Loopy Linda]

is pow randwick? i thihk it is, my son sees Dr Marc Coughlan there and he id head of paediatric nuerosurgery for children's hospital. his private rooms are in pow private which is where i see him. i think he is great, my sons scar was tiny and thin an 4 months later and i noticed i couldn't even see it anymore. also he is pretty good on the eye too.

[ideamum]

It just means a small head, If u have one too then probably it's just normal. It can be a symptom of lots of different disorders but can also just mean she has a small head, as long as it grows it should be fine. Paeds find lots of things out about children, often it amounts to nothing!!!

Good luck


I agree with this statement if you have it it is prob just normal for your baby...

All it means is a small head and thre fore in some cases not enough fuid is getting to the brain but as I said and kiwi said... If you have it it is probably normal..

[tally]

My baby was diagnosed with possible Microcephaly inutero...

To have Microcephaly their head measurement has to be under 2% on the growth scale.

To be honest I would think it would have been picked up at birth if your baby did have it, its a pretty prominent feature and you cant really miss it, theres a couple of good websites that have piccies so google and have a look, tho try not to read to much into the information as its pretty terrifying.

My baby was born with quite a small head but all testing including genetic testing has come back clear. It is tho a waiting game as some issues dont arise to later on, ie the learning issues etc. I'm always on edge waiting, watching and worrying about milestones.

I really feel for you, we were told they said that our baby might not survive and if he did he could range from being perfectly normal to having severe problems. Its a very scary time.

Let us know how you go... not too many people really know much about it, as its not all that common... I found lots of info about it, but not much on a personal level.

All the best.. xxx

[kimcam]

Hi To All,

Thanks Tally which sites did you find info on microcephaly. What tests did you have done. I guess it is just a waiting game if it comes back all clear.

Kim

[tally]

I'll have to have a hunt for the website theres one that explains it quite well.

I was looking at some info earlier today and I didnt realise that it can develop after birth, I thought it was a genetic thing that was present straightaway.

I still stress and worry and I dont think thats ever going to stop.

They did some sort of genetic testing from the cord blood and not sure what else, the whole thing is a bit of a blur now. We didnt have to have an MRI done but I suppose if he fails to meet his milestones etc we'll have to look into it.

When I get a chance i'll pm you some websites.

xx

[MyFourCubs]

Kim- found you!! When Claudia was a baby the clinic senmt me to a paed because they said her head was too small. I didn't understand it, always thought it was an issue if their head was too BIG! Anyway, paed thought they had rocks in their head- her head was fine and he thought they must have been measuring wrong. I have no idea what microcephaly is but your beatiful daughter has always looked fine to me:yes:

If you are really worried I would push for an earlier appointment. Paed has agreed to see Alex tommorrow at 11am re his low muscle tone. If you keep bugging them they usually give in!!

Chin up, all will be fine. I am glad you have found lots of sensible ideas and support here.


Sara:)