dont know what it is?
- By polly 2
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Thu 15 May 2008 16:18
i am a single grandmother careing for my 6 year old grandaughter she has been diagnosed with microcephaly (tiny brain syndrome) she has other disabilaties too but nobody has actually explained this to me they just go round the houses shes got the mental age of 18 months still in nappies dosent speak cant walk very far very under weight a split personalatie and to top it all off she never sleeps a full night i love her with all my heart but sometimes its really tirering whens shes screaming the house down at 3 in the morning when she wants to get up and play and there is no one else to help me with her
is there anyone who knows something about this? any information would be very helpful
Replies
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By chenrezig
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Re: dont know what it is?
Fri 16 May 2008 21:40Hi Polly,
I saw your post a couple of days ago, haven't heard of microcephaly before myself. I thought maybe somebody else who knows about this might have posted by now, but no-one has so I thought I would have a surf on the 'net to see what I could come up with...
A UK website -
www.cafamily.org.ukThree US medical websites -
ninds.nih.govHope this is of help to you, and wishing you all the best
Liz
- By moonstar
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Re: dont know what it is?
Sun 18 May 2008 03:34Hi Polly
I also looked up microcephaly and found some sites for you:-
Microcephaly Support Group - www.microcephaly.co.uk
University of Virginia Health Systems: www.healthsysten.virginia.edu
Hope these are of some use.
Take care
- By moonstar
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Re: dont know what it is?
Sun 18 May 2008 03:37Hi Polly
Me again !!
should have put www.medic8.com
Sorry for mistake!!
- By moonstar
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Re: dont know what it is?
Sun 18 May 2008 03:42You are going to think that Im a total idiot!!!
In the University of Virginia Health Systems link I have misspelled Systems!!!
My excuse is that it is 3.40am and Im finally getting sleepy!!!!
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By Gingatossa
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Re: dont know what it is?
Sun 18 May 2008 16:32Hi Polly2!
My daughter Danika has MICROCEPHALY, on top of a whole shopping list of other multi-complex needs. She is 12 years old with a mental age of a 3 month old baby! She never slept in her first couple of years but is fairly good now!
Microcephaly literally menas small head, it can be due to a birth trauma (Danika's was from suffering an acute twin-to-twin transfusion syndrome in which her co-twin died and left Danika with a severe birth asphyxia at 37weeks) it can also be due to infections in utero. Microcephaly affects people in different ways, some may have very little disability, others like Danika, may be severely affected (the majority of Danika's brain cells are dead). It's just a case of living each day as it comes, without any expectations and enjoy your grandaughter.....however hard work it can be at times! Do you get any respite breaks? Hope all is well, best wishes to you both. xXx
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