Special Needs

Need to hear some positive stories about microcephaly

DDs skull plates are fused. Some people consider her microcephalic because her head is the size of a one month old (maybe a little smaller). Other people say that since her body is proportionate she's not microcephalic. In either case, all of her doctors keep telling us how kids with microcephaly don't develop well.

I know that microcephaly doesn't look good on paper, but is there someone out there that has a positive story? or knows of a child who defied some odds? 

 

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Re: Need to hear some positive stories about microcephaly

  • my son has microcephaly and none of his doctors ever told us that he won't develop well.  we know he will always have hurdles to overcome and he will always be special needs but they have said that only he will be able to tell us what he can and cannot do.  i think it is very important for any special needs to parent to see that and also for doctors to recognize that.  of course they don't want to give false hope, i understand that as well.
  • Has your daughter had a CT or MRI? 

    DS has microcephaly due to molding at birth, however his plates have not fused and they're keeping a close eye on it. 

    I believe it's only microcephaly if your child's head is 2 standard deviations below the growth curve at all.

    A big indicator of how your child will do with microcephaly is an MRI and CT scan. The other reason for microcephaly is that the brain didn't develop enough (or parts are missing) and didn't push the skull out. 

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  • I think that micro is a condition where you really have no idea what the future will be like.  In some cases, the impact is severe and typically the health problems are evident pretty early on.  For other kids, the impact can be mild or not apparent at all.  Micro is associated with hundreds of syndromes and as a result, the impact is varied.  Some kids are completely normal and some are severely disabled.  I'm sure this isn't helpful.  When I first found out my daughter had micro, I googled it and fetal alcohol syndrome came up and I was horrified.  But as time goes on, her head grows but stays below the charts and I'm sure her micro is considered mild (she is also small so her head does not look too small on her body).  Her development is behind but we have no idea what this means for the future except that most doctors have told us she will be a special needs kid.
  • I think this is the same condition that my cousin's son had. I'm not 100% sure, so don't put all your faith in what I'm saying...but...he has had a few surgeries as he has grown and the upper part of his face looks a bit off, but developmentally he's totally normal. He's 12 now and doing well.

     Like I said, I'm not sure this was his condition. I was just always told that he didn't have fontanelles. I was just a teenager when he was born.

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  • Thanks for the insight.  

    We've had a MRI and EEG. The MRI showed that the volume in her brain was small, which is why everybody keeps telling us that she'll have so much trouble developing, because of the whole "if you're brain can't grow, you can't learn" thing. And yes... she's def. more than 2 standard deviations below. She's a proportionate 11 lbs at 23 months old and only growing very minimally. We're looking at dwarfism diagnosis and from the few stories about kiddos with proportionate microcephaly dwarfisms that I can find it seems like they're capable of everything that a bigger person is. What she has is very rare, though, (140 people ever in the world) and people aren't just sitting around on every corner with it. . . actually I think most of the people who are in the early case studies are already dead. 

    The EEG showed abnormal activity, but DD is deafblind and very very sensory seeking (constantly rocking and banging her head) so we're not sure if that was what was abnormal or there were actually abnormal waves.  

      

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  • I really think you need to find a  doctor that is going to give you a diagnosis. From your post it sounds like your daughter is pretty impaired? Much more than beyond the scope of microcephaly. I am not trying to sound insensitive, but it might help to get some opinions. Something doesnt sound right to me that some dr's say she is and some say she isnt.
    Julian David 8/7/06 and Isabella Mia 5/14/09
  • imagedebs10/18:
    I really think you need to find a  doctor that is going to give you a diagnosis. From your post it sounds like your daughter is pretty impaired? Much more than beyond the scope of microcephaly. I am not trying to sound insensitive, but it might help to get some opinions. Something doesnt sound right to me that some dr's say she is and some say she isnt.

    Why didn't I think of bringing her to a doctor for a diagnosis? Good thing I had a random internet person to tell me that. Oh, wait. Nope. Didn't need that obvious bit of info. Don't think I needed to hear how impaired she was from a random person either. Why do you think I'm on the special needs board and not her age board? Obviously she has some delays. How stupid do you think I am?

    Getting a diagnosis for a child with complex medical issues isn't always easy. We've done blood tests, MRIs, EEGs, full body bone scans, we work with 20 different specialists... hematologists, immunologists, neurologists, orthopedists, gastroenterologists, ophthalmologists, otolaryngologists, neurosurgeons, . . .  just to name a few.  You name it---we've seen them! 

    At this point, we've received two different diagnoses of forms of dwarfism (from different doctors), which somewhat explain what's going on, but don't paint the whole picture. I don't think anything will paint the whole picture, honestly. 

    My question was merely about one aspect of DD--the microcephaly. She does not have as much brain volume as the typical child her age and most medical professionals relate that to a low intelligence, among many other things. . . because your brain is supposed to grow as it builds more and more brain cells.

    And doctors disagree on things all the time for lot's of reasons. Like I said. She's very small for her age, so if you look just at her size, she's microcephalic. Other people think its worth factoring in the dwarfism, though, because she's proportionate and she's got small feet and small hands too, so not every doctor we've seen thinks that its accurate to give her that label.   

    I was just hoping for a positive story of someone who defied the odds.  

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  • I'm sure it must be so difficult to feel so alone and without anyone who can give you any indication of what the future may hold.  Everyone on this board sees that to a varying degree but in cases where the diagnosis (or possible diagnosis) is so rare, it's even more difficult.  Have you tried the micro board on yahoo?  I don't know if it would help - but you might be able to find someone there who can add some insight or through childrenwithmicro.org.  I think there are definite possibilities for kids with micro to be normal and do more than expected.  Sorry I can't be of more help!

  • Hi there,

    My son is 9 mos. and has microcephaly (born with it).  He also has hypoplasia or partial agenesis of the corpus callosum.  He also has hearing loss (he wears hearing aids - since he was 3.5 mos) and is being evaluated for cochlear implants.

    His head has been growing since birth, but still below the curve

    Anyway, although we also know we can't predict his future, so far he has met all his milestones (he crawled at 6 months and is cruising now), except for speech but I think that is b/c of his hearing loss.  He does coo and babble and says "mama," but I don't think it's intentional.

    I feeld very scared, too, but am hopeful.  Please feel free to PM me if you want, or email me at melissavaughan@live.com

     

     

  • imageMummyGruetzie:

    imagedebs10/18:
    I really think you need to find a  doctor that is going to give you a diagnosis. From your post it sounds like your daughter is pretty impaired? Much more than beyond the scope of microcephaly. I am not trying to sound insensitive, but it might help to get some opinions. Something doesnt sound right to me that some dr's say she is and some say she isnt.

    Why didn't I think of bringing her to a doctor for a diagnosis? Good thing I had a random internet person to tell me that. Oh, wait. Nope. Didn't need that obvious bit of info. Don't think I needed to hear how impaired she was from a random person either. Why do you think I'm on the special needs board and not her age board? Obviously she has some delays. How stupid do you think I am?

    Getting a diagnosis for a child with complex medical issues isn't always easy. We've done blood tests, MRIs, EEGs, full body bone scans, we work with 20 different specialists... hematologists, immunologists, neurologists, orthopedists, gastroenterologists, ophthalmologists, otolaryngologists, neurosurgeons, . . .  just to name a few.  You name it---we've seen them! 

    At this point, we've received two different diagnoses of forms of dwarfism (from different doctors), which somewhat explain what's going on, but don't paint the whole picture. I don't think anything will paint the whole picture, honestly. 

    My question was merely about one aspect of DD--the microcephaly. She does not have as much brain volume as the typical child her age and most medical professionals relate that to a low intelligence, among many other things. . . because your brain is supposed to grow as it builds more and more brain cells.

    And doctors disagree on things all the time for lot's of reasons. Like I said. She's very small for her age, so if you look just at her size, she's microcephalic. Other people think its worth factoring in the dwarfism, though, because she's proportionate and she's got small feet and small hands too, so not every doctor we've seen thinks that its accurate to give her that label.   

    I was just hoping for a positive story of someone who defied the odds.  

    Well I am sorry I upset you, I really am. I obviously didn't know your history, and only heard bits of it with this post. My intention wasn't to upset you, which I did. I wish you the best of luck. 

    Julian David 8/7/06 and Isabella Mia 5/14/09
  • I agree I don't think anyone was trying to hurt your or make you feel like you are not your child's best advocate.  I too was surprised when I got to your secondary post that your child had more than just microcephally going on.  That really does at a new dimension to your post.

     Even with just one "symptom" one cannot really compare kids.  My daughter has microcephally and hearing loss.  That is it and at 2 yo cannot talk,walk, sit, roll or feed herself.  She smiles like there is no tomorrow, laughs to bring joy to my heart and is mentally active each day.  I know another person whose only "symptom" is microcephally, no diagnosis.  Her child is 7yo and was always very advanced in meeting his milestones.

    Hugs to you and I am sure you find inspiration in the little things your child does everyday and being in your arms today your LO has beaten the biggest odds.

  • Thank for for the positive story! That's what I needed. :)

    Wishing you the best for you and your son as you go through the Cochlear Implant process. We're trying to get one as well, but haven't found a doctor experienced with smaller kiddos around here. I know of a few at Vanderbilt, but am not sure about the insurance yet. Anyhow, I hope you keep us updated on his journey with it . . . I'm very excited about the possibility of DD getting one. 

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  • First of all-- both of your kids are adorable! 

    Second... thanks for the yahoo group and link. I just joined the yahoo group and am going through the conditions on childwithmicro taking notes on ones to ask the next geneticist about when we go see the dwarfism specialists. 

    Best wishes to your precious kids . . .  

     

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  • imageMummyGruetzie:

    Thank for for the positive story! That's what I needed. :)

    Wishing you the best for you and your son as you go through the Cochlear Implant process. We're trying to get one as well, but haven't found a doctor experienced with smaller kiddos around here. I know of a few at Vanderbilt, but am not sure about the insurance yet. Anyhow, I hope you keep us updated on his journey with it . . . I'm very excited about the possibility of DD getting one. 

    that was supposed to be to thefuturemrs. :)

     

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  • Hi mums

    Any updates wrt your kiddos?
    My DS is 7 weeks now and was diagnosed with microcephaly too.
    How has things been with all of your different situations?
  • Sadasm,
    I emailed you.
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