Patient Comments: Microcephaly - Symptoms and Signs

Does your child or a child you know have microcephaly? What were the main signs and symptoms associated with the condition?

Comment from: Polly, 25-34 Female (Caregiver) Published: October 14

My daughter has microcephaly and cerebral palsy, she is now 28 years old. She has severe learning difficulties and also suffered epilepsy. She has been in remission for over ten years now for her seizures. We have just heard about low life expectancy and are freaking out about it as we weren't told about it when she was born. We have only heard about younger children having this.

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Comment from: CPmom14, 0-2 Female (Caregiver) Published: March 11

My son is almost 9 months and has microcephaly and has been diagnosed with cerebral palsy. He has eating and swallowing difficulties and gastrointestinal problems like severe reflux and poor weight gain. He has yet to achieve his milestones such as turning and rolling, sitting upright and holding objects like toys. He is on several different medications for his reflux and poor weight gain but no medication for the muscle spasms associated with the cerebral palsy. He does physical, occupational and speech therapies every week. We are still not sure what caused this but we are doing everything we can do to deal with this.

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Comment from: anita, 0-2 Female (Caregiver) Published: February 10

My daughter and I realized that something was just not right when her baby girl wasn't meeting milestones. My daughter spoke with pediatrician and that's when the testing began. Our little girl is 27 months old, can say mama, nana and no, and is very good at chattering. She receives therapy, occupational, physical and developmental, and First Steps is helping us arrange speech. Our little one is diagnosed with microcephaly, polymicrogyria, encephalopathy, benign cyst and spastic hemiplegia. She is able to walk and wears splints, and is able to feed herself.

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Comment from: Sarah, 19-24 Female (Caregiver) Published: February 02

Our son as microcephaly and learning difficulties. I wonder if there is a lower life expectancy for people with this condition, and if so what should we be looking out for.

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Comment from: SquarePeg, 7-12 Male (Caregiver) Published: June 24

I have a son with speech delay and labeled intellectually disabled. Only recently did they say his skull size was small, and he has microcephaly. He is progressing. He has had only one seizure and is taking no medications. I have him enrolled in public school for speech therapy and motor skills therapy.

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Comment from: Sarah, 25-34 Female (Patient) Published: October 08

My son has just turned 5 and was diagnosed with microcephaly when he was just months old. Apart from him being small for his age there are no signs of this. As he has just started school and he is having trouble grasping what is being asked of him, he is seeing a speech and language therapist but still is not getting things.

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Comment from: L Weber, 3-6 Male (Caregiver) Published: November 22

My son has microcephaly. He is 5 turning 6 in April 2014. I have not yet met someone that looks like him, or seen a child with a small head like his. He does have a speech difficulty but is improving every day. He is on no medication yet, although his neurologist suggested Ritalin. He is extremely energetic, but we try and channel the energy. We control him by always telling him, you need to calm down son, and it works 90% of the time. Should my son go to a special school, I don't think so.

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Comment from: Khaled, 7-12 Female (Caregiver) Published: March 20

My daughter is microcephalic. She is 5 years old, has difficulty in speech and we try a lot of speech training, drugs like speak Smooth and hyperbaric oxygen therapy with no results till now.

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Comment from: Kathy, 19-24 Female (Caregiver) Published: December 30

I have an adopted daughter with microcephaly. She came into our family at 5 weeks. She has other facial characteristics of fetal alcohol syndrome, but we don't know the cause. She nursed for a long time, went through first steps, and was in school with typical kids for the most part. With lots of help, she graduated from high school. She has been volunteering with day care centers and is currently babysitting at our home for a 5th grader. She has friends and a boyfriend and with some supports may live an independent life. She is beautiful and spunky!

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Microcephaly - Management Question: In what ways do you manage your child's microcephaly? What medications does she/he take?

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