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Microcephaly

SpellSpell Member Posts: 2 Listener
edited May 2014 in Parents and carers
Hi, I'm new to this forum. My son is almost 10 months old and was oxygen deprived at birth. He is evolving CP and is developmentally delayed -he doesn't roll yet, and has problems with sitting and using his hands. He also has microcephaly (head circumference < 0.4th centile). I'm particularly worried about the microcephaly and what it might mean for his future mental acuity. He's a lovely boy, very smiley and babbles a lot. He mostly seems pretty engaged with us but has blank spells, and isn't especially interested in toys unless they have lights and sound. Does anyone have any experience of microcephaly that can tell me a little of what to expect? Is there anything that can be done for it?
Thanks,
S

Replies

  • renacahillrenacahill Member Posts: 145
    Hello
    I dont have any experience of microcephaly, although my grandson has CP due to oxygen starvation at birth. His head circumferance was very low at your sons age (he's now almost 2) but so was the rest of him as he was 4 1/2 lbs at birth. I think it is now 0.4 centile but extremely skinny and probably not on the chart for weight. Have you hade a proper diagnosis of mc or have they just measured his head? Have you had an official diagnosis based on an MRI scan?
    My grandson did roll over for a few days at 10 months (we took pics!) but didnt bother again for another 6 months! His sitting is still hit and miss and he is bright and smiley. He also had blank episodes for the first 9 months on and off, but appears (fingers x) to have outgrown them.
    Also still loves noisy, flashing toys, especially vtech baby walker, happily sits in front of it playing and talking on the 'phone' Definitely the toy to get as encourages lots of different hand movements and his hands are also uncordinated.
    Hope someone can help with the mc, from what Ive read it can range from mild disability to severe.
  • SpellSpell Member Posts: 2 Listener
    Thanks both, it's reassuring to hear that they are making good progress. We haven't had a formal diagnosis, just head measurements - up until recently they have only ever mentioned his head was small but latest letter to the GP calls it microcephaly. He had an MRI at birth but not since. This is probably going to sound really stupid but I'm worried he's going to end up looking quite odd as he's a chunky lad in every other respect, just very small head. When they were 10 months did they take much of an interest in toys? Most kids I know Dylan's age pick things up and examine them, but he doesn't even seem to notice them.

    renacahill - great that your grandson has grown out of the blank spells, we're hoping that D will too - he had an EEG recently to check for sub-clinical seizures but none were seen.

    He has rolled over from front to back 3 times now but I was too busy jumping up and down to get a picture :-)) Will look into the Vtech walker, if I recall correctly it's a toy my friend described as one of the most annoying toys ever. We like those in this house though!
  • TinatwinsmummyTinatwinsmummy Member Posts: 4
    Hi one of my twin boys who has quadraplegia CP has severe microcephaly.He is 22 months now and although his head is still very small developmentally he has made huge progress.His head control is very good now and has just recently started to hold toys.
    Tina
  • renacahillrenacahill Member Posts: 145
    Hello Spell and Dylan
    I am so glad you have found Tina to talk about mc. I can do the CP and even the blank spells but am lost re mc! Dear little Elli had a normal eeg too, so I hope that is a good sign for D. If I'm honest it was these blank spells and the possibility of developing full blown epilepsy which scared us far more than the CP (still does!) They were all related to sensory stuff, loud noises, pain, tiredness and touching the bottom of his feet! (feet???) We started noticing him doing it less to noise first and eventually all the other stimulators dropped away - we think may be his nervous system developed enough for him not to 'zone out' in this way.
    Elli did try batting toys in a play arch away around 4 months, but as his hands are not well co ordinated he tends to pick things up and drop them, but plays for ages with the vtech stuff. He has no fine motor skills yet.
    http://www.fledglings.org.uk/ have lots of sensory toys, maybe dylan would look at the 'magic light ball' as its rolled, its a good way to encourage 'tracking'. My daughter and I never get irritated with the vtech talking toys, we are just so happy he is able to use them, not bad for a little boy who wasnt expected to survive. We are grateful for every little step forward, its a long road to travel but dear little Ells makes it all worthwhile. PS there is a pic of him with my daughters threads, her name is Ellibarebum (what was she thinking!)
  • sarahprattensarahpratten Member Posts: 83 Courageous
    Hi,
    Microcephaly tends to mean that the brain isn't growing as fast as it should. The sooner you take action the better.
    Your son sounds similar to mine in that he is developmentally delayed and smiley (although mine wasn't babbly) and has blank spells. Will was 20 months old when we discovered The Scotson Technique (TST) and my only regret is we didn't come across it sooner or rather we weren't aware that Will had a serious problem sooner. I haven't much time now , but I suggest you look at Advance's website www.advancecentres.com. The important thing is to start therapy while your son is still young as this can prevent alot of unwelcome changes.
    Best wishes,
    Sarah
  • salosalo Member Posts: 1 Listener
    hi my son has microcephaly and he is now nearly 10 and is due to go to high school next year. he has been seeing A doctor now since he was 2 and they are now dischargeing him because there is nothing else they can do all i can do he find A good school for him he has learning difficultys and someties can be struggle with him at home and him being aound his sister he gets very fustrated very quickly and has no consentration i am worried for him at school because of all this he is so far behind his other peers all i can say is its not easy but you need to be there for them and do all you can to help them some times. hopeeveything goes well
  • BongyornoBongyorno Member Posts: 9
    Dear Spell,

    Have you ever heard about conductive education?
    It can help to your child to start up rolling and crawling, and sitting, and using his hands.
    Its a holistic programme, which can help you. The best if you start it in the early period. I worked with a child with microcephaly. She didnt use his hands as well, and dont rolling, dont watching the toys. We were working so hard (it seemed to her playing), and after that she started to use his hands, and she learnt to crawl, and stand up.
    You should give him shaekers, to hold on, and making music with it, and other toys, and playing, and make him motivate to the world, make him motivate, to explore the world.

    If ou have question, just let me know, and I try to answer:)
  • jonthebonejonthebone Member Posts: 1 Listener
    hi i have a 13 year old daughter with microcephaly she as found life very hard as like you have said she can be very destructive and very violent she has struggled all the way through school and all the time it keeps coming back to the same old thing with them she is naughty and manipulates us and we are bad parents the biggest problem we have found is that very few people have heard of it. we have found for the last 9 years since she was diagnosed with it that they do not see this as a medical condition she also as severe insomnia with it but again this is down to us not our daughter,s problems
  • Mags1946Mags1946 Member Posts: 4
    Hi my foster daughter has mc adhd and pdd she has assd learning diffs due to her mc is 15 but more like a much younger child she is on the milder side of mc as it varies she attend special school and has met milestones later
  • Mags1946Mags1946 Member Posts: 4
    Yes has insomnia and yes here too not seen as medical condition just born with it they are micro Mephanic so i am told!
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