MIcrocephaly

Jammie - posted on 01/30/2009 ( 9 moms have responded )

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Looking for advice on microcephaly from parents who have been there. Have an 18month old, trying several thearpies responding well but still have concerns about what to look for in the future and MR.

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Amanda - posted on 02/24/2012

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i have a 17 month old that we found out a couple months ago that has microcephaly but they do not know the extent of it. he does OT physical therapy, visual therapy, and a couple others he has improved since he was 4 months just laying on the floor. He is able to sit up on his own and can chew solid foods. im unsure what to expect he is my 6th child and all of the others are normal so im stress and my husband is in Denial and doesnt want to accept that there is a problem. can u are anyone else give me some advice as to what else i can do to help my little man. sometimes i am at a lost for words and unsure if i am doing all that i need to do.

Katty - posted on 05/21/2009

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i dont have children with it i my self have it i wear glasses and have learning disabilty also have a short trem memory loss but other then that im ok and ive had a child who does not appear to have it my borther has it to so it runs in family groups i of less may have just a mild from of it im sure was just told at 12 yrs old that it is what i have microcephaly means to have a small head which becuze of that the brain does not fully grow so i guess things dont work right when that happens just letting u know what it is

Kelly - posted on 02/25/2009

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my son has microcephaly and he is 6 yo he has a bad lot he dont walk, crawl, talk or not using the toilet. when he had his MRI there is a white bit on his brain and he has had it checked twice and has not changed. i have to do every thing for him but i was on the web and found a support group and they could not help me cause there children was doing most of the stuff that my son could not do so just keep your hopes up and see how you go.

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Lisa - posted on 03/30/2012

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Hello all.



My daughter who is now 18 months old, was born with microcephaly. From her 3rd day of life we continually found other things out. She has persistent fetal vascular syndrome (blindness and has since had both eyes enucleated), diffuse brain atrophy, deafness, atrial septic defect, perphial plunomic stenosis murmur, failure to thrive, viscular hyperalgesia, seizures, apneA, and shroom 3 (chromosome deletion 4q21.1.21). She has had cranial stenosis surgery to try and correct the microcephaly but her head still isn't growing nor is her brain growing correctly. She eats from a g-tube, is in a wheelchair, just learned to sit up on her own at 16months, but doesn't have the protective response to sit alone. Anyone else who has any of the above, or insight into the future would be wonderful. All we get from drs is "I don't know", and she has spent over half her life in the hospitals and surgeries.

Amanda - posted on 02/24/2012

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i to have a child diagnosed with microcephaly and unsure what to expect. he goes to PT, has OT, A vision therapist that comes and sees him but i feel like im not doing what i need to do to help him. My husband is in denial and want except that there is any thing wrong so i am the one that has to deal with everthing. since being diagnosed he can sit up on his own and chew solid foods but is not crawling or walking and only says a few words. does anyone have any advice they can give me

Mary - posted on 08/25/2010

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i am looken for support people who can help with babies born with microcephaly

Katty - posted on 05/22/2009

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i do know that me and my brother were test and r missing a croneazone but i dont know which one mum most likely knows which one and this is why we have it my brother is also got asbergers and asritis in both his legs

Velvet - posted on 05/21/2009

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Hello, my little girl was born with microcephaly (small head size). The sutures of her skull were prematurely fused at birth and so she was monitored by a neurologist for the first part of her life to ensure that no pressure was building in the skull (fortunately, she did not require surgery to correct it. However, as pointed out, often microcephaly is related to slow brain growth and results in developmental delay, but this is not true of everyone... Just as all children develop at their own pace, so too do children with different conditions. I have also heard of a child who has severe microcephaly and NO delay at all!)



In our case, the microcephaly went hand in hand with a genetic condition... a rare chromosome duplication that manifests in moderate+ physical & mental delays. This is a common feature in several differing chromosome abberation syndromes. Have you undergone genetic testing yet? It is a simple blood test, but the results take months to arrive because the lab must grow cells and analyze these.



Wishing you all the best!



Velvet



"Samantha's Syndrome"

http://www.tetrasomy18p.ca/

Heather - posted on 05/21/2009

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Hi!
I have a son with microcephaly. He has enlarged ventricles where the brain tissue is missing, and also more space between his brain and skull, again, from missing tissue. He has a thinning corpus callosum, cortical visual impairment, seizures and is globally developmentally delayed. He is severely mentally handicapped. It's hard for us, b/c we really feel like there's a smart little boy in there and we have to figure out how to crack the nut, so to speak. We had early intervention for the first 3 yrs of his life, then he entered the school system, has had 2 yrs of pre shcool and summer school, and will be heading into kindergarten next yr, amazingly enough. He has had PT, OT, Speech, feeding and vision therapies. We have had good luck with all of them. We also do therapeutic horseback riding therapy and have seen an incredible increase in his trunk control. He is a happy boy who loves music. He can now, when assisted, walk across an entire room. He is eating food the consistency of oatmeal and fruit bars, and we give him milk from a sippy cup, pouring it in his mouth. He is still progressing, which is amazing. Tell me about your child. I live in Mass. Where r u?

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