Help requested from SantaFIO2 and anyone else with knowledge of Microcephaly

[mizmiz]

I am a salt mostly working with people with pmld. At present I am abroad in a relatively undeveloped country.
Yesterday I was talking to my husband's interpreter who told me that his 5 year old son has CP and Microcephaly and pmld. I have offerd my help,(haven't yet met the child) but know very little about Microcephaly, and wondered if any of you good people could fill me in (or maybe that is impossible in that every incidence is different?) and/or recommend books, websites, tips whatever?
I really want to do what I can-as you can imagine, life for children with these sorts of issues is very very difficult in a country like this, and despite numerous requests for a visa in order to take him to see a Belgian neurologist, the family have been turned down every time.
I know that the father is involved in at least one Microcephaly forum and he speaks perfect English, so accessing stuff is not a problem.

At present I am thinking of discussing switch options with him as well as accessible software, perhaps signing, and some intense sensory therapy.

I would be so grateful for any nuggets of information, and as always, am more than happt to answer any questions on salt issues!

ooooo a thread with my name on:o

dont really know what to say though. Is it the yahoo group he posts on? if it is I most probably know who it is! It is a group that made me very paranoid about head measurements!

My daughters speech development is condidered 'normal' just delayed iykwim. So we are just using the normal things like makaton and PECs to encourage vocalisation.

Microcephaly can be due to hundreds of causes so the course of action and long term diagnosis differs widely. With my daughter we still dont have an official diagnosis but I really beleive she has CP too. Dont think this will really help you :(

Caroline5's daughter has microcephaly aswell and another lady who posts on mumsnet but I have forgotten her nickname. I will try google and see what I find but as I say with my dd her speech is considered to be developing 'normally' so it is just the usual things. My daughter seems to understand LOADS more atm than she can say, yesterday i said to her in the lounge "when you get on the bus give the christmas card to ellie ", she waited for the bus, walked out the house down some steps and onto the bus and gave her friend the card. This is from a child who has hardly any speech and limited eye contact. i also find using visula prompts and pictures helps her understand alot of things better.

thanks for your advice on her christmas present btw! and tell the gentleman to post on here too as it is invaluable to many of us

also my daughter does love using the sensory room and lights and music and singing and this does bring out more 'speech'

at school they have found the jacuzzi makes her copy speech more too!

My dd2 (age 3.5) has microcephaly but we have no diagnosis of what has caused it. It basically means 'small head'. It is usually associated with learning difficulties, but not necessarily. As far as I know, it is mainly a symptom of a large number of genetic syndromes, but can also accompany CP and be a result of viruses during pregnancy eg toxoplasmosis, CMV or be part of fetal alcohol syndrome. The list of possibilities seems to be endless, so we are not holding out much hope that dd2 will ever get a diagnosis.

We are members of a Yahoo group on microcephaly -this may well be the one your friend is on as I don't know of any others! \link{http://groups.yahoo.com/group/microcephaly\here}.There is also one for 'mild micro' there as well.

HTH, but if you have been looking on the net, you probably knew this already!! dd2 has SALT, although she is non-verbal (she did say the odd word in the past, but this has stopped). Tbh I'm not too sure what happens in her SLT sessionsas I'm not there when it happens. They have concentrated a lot on her eating which is terrible! Best of luck :)

Hi fio! :)

hello caroline:)

Gosh,thanks for the amzingly prompt responses!
I will find out exactly what forum he uses when I see him.
As I thought, each case will differ (seems opdd that I've never seen a child with microcephaly in 10 years of work.)
I have already checked out the link and all the advice is v useful. Thanks so much!
I just can't stop thinking about this family especially as only dad is here, working away from them. Mum is on her own with the little boy at presnt.
I know British support and services often leave a lot to be desired, but imagine living in a country where it's nigh impossible to get out because you don't have a wheelchair and the pavements are so bad, no toilets for the disabled, no ramps and so on.
Jeeeeeeeeesus!!!
Hey, that's great about your daughter's receptive language SantaFio! That's a pretty complex sentence to take in. Hope her little friend liked her Christmas card :)