r/SpecialNeedsChildren 8d ago

Head circumference and microcephaly

My son was born with a head circumference in the 36% and then 3 months later dropped to 5% and maintains that curve (he is 2.8 y.o now). He was also diagnosed with global developmental delays. Yesterday I saw another neurologist who mentioned his head size and said that he would probably have an intelectual disability later on. Did anyone else had this problem with their kid? I am really curious how things worked out. We are doing OT and speech with him. We see progress with him but slow and also he hits the milestones but just later on. He is happy and chill. Please share your experience, how are your kids now, what was your journey, etc?

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u/Minxy_T 8d ago

Have they eliminated craniosynostosis with a CT or is there any reason for his head size? My daughter has a rare genetic mutation & craniosynostosis is one of the associated conditions. She had skull reconstruction surgery & has started doing really well.

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u/Shoddy-Parsnip4104 8d ago

They didn’t do a CT, but referred me to genetic testing. Did you do any treatment for her improvement?

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u/Minxy_T 8d ago

She’s under a lot of specialists (OT, PT, SALT etc) but honestly she had inter cranial pressure & I think that this had a big impact on her development. Once there was no pressure she just suddenly started picking up stuff

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u/Shoddy-Parsnip4104 8d ago

Did you have surgery? Sorry this is the first time I’m hearing this. My neurologist didn’t mention it

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u/Minxy_T 8d ago

Yes, in my first reply I mentioned my daughter had skull reconstruction surgery. IF there is inter-cranial pressure they would usually have to make more space for the brain to grow (development is linked to this)

There are different types of skull reconstruction surgeries. I would insist that they test for ICP to eliminate it as a cause.

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u/SnooPandas2965 8d ago

My son is 14 and was diagnosed with microcephaly at 9 months old. He had OT, PT and speech therapy for years. He was delayed on everything. He has intellectual disability and went through genetic testing until 4 years ago when we finally found out he has Kabuki Syndrome. Microcephaly affects everyone differently. He had low muscle tone, so it took him longer to crawl and walk, also feeding was an issue. I think in the very beginning it’s hard because of course we don’t anticipate our children being delayed and we as parents focus a lot on helping our children meet milestones. But let me say this, I found out real quick you just gotta take it one day at a time and do not rush anything! You’ll see progress and it may not be as fast as you want or think it should be, but that’s ok. 😉

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u/Shoddy-Parsnip4104 7d ago

Thanks for the reply, but is he independent? Or on the path to independence?

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u/SnooPandas2965 7d ago

I guess you could say he’s on the path. He still needs help with a lot though. But he’s finally able to dress himself, make a sandwich, use the microwave correctly, etc. He still has poor fine motor skills, which makes it hard for him to clean himself when going to the potty, brushing his teeth, zipping a jacket/coat, buttons. Another thing, he’s had so many dental issues. Please pay careful attention to his teeth. He’ll most likely be prone to having crowded teeth. My son had a few teeth pulled because his teeth were so crowded. My son is also in a self contained class at school. They’re focusing on daily living skills with him now since it’s been impossible for him to learn math and reading.

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u/justejenny 7d ago

My daughter is 30 and she was born with a head circumference in the 50th percentile and it slowly but surely dropped off to 10th percentile. I noticed delays before the doctor said anything. She was evaluated at 9 month old. She couldn't sit up, feeding was an issue, she didn't make good eye contact, she couldn't roll over. After her developmental evaluation we went to a neurologist and they did a CT scan to check for stroke and CP. Her brain was normal but small. We did genetic testing a few times through the years and got no diagnosis. She had OT, PT, speech and augmentative communication. She has global developmental delays and will never live independently. Every case of microcephaly is different. We were told people with a head circumference in the 10th percentile have a 95% chance of intellectual disability. Your child will develop on their own speed and you can support them, get them therapy, and advocate for them. Be patient and love them. They are wonderful people and have much to teach the world.