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Forum: Children with Special Needs


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May 30th, 2009, 12:15 PM
Ditzzy's Avatar Stupid Lamb;)
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Is your LO microcephalic or macrocephalic? Do you know the circumference?


Ava is macrocephalic and off the charts. I don't know the exact number other than it's approx 50 cm or a little over.

I'm wondering (with a few of you ladies talking about cranio) if they will go the helmet route to get her fontanel to close? I know Ava has the exact opposite problem that out cranio kiddos.

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May 30th, 2009, 07:33 PM
quietsong's Avatar Just Another Slacker Mom
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I've forgotten Danny's exact circumference, but he is hovering at about 20th percentile for head size. He is at extreme risk to become microcephalic; one of the long-term risks of CMV is slow or halted brain growth. The further we get from his birth, the lower the chance goes, and so far - thank god - his head size has held its growth curve.

Eric's not SN or actually macrocephalic, but his head size has remained above 95th percentile for over 2 years now

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May 30th, 2009, 09:50 PM
kittycat's Avatar Platinum Supermommy
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Kyle's headsize is fairly normal, but Ian had benign hydrocephalus. It was off the charts, huge. In uetero, it always measured 2-3wks ahead. For us, it didn't amount to more than caution so he didn't hit his head too hard, and PT for the first 6mo (torticolus, and weak neck muscles). They told us he could end up with a helmet back then, but I knew all the head positioning techniques from Kyle. So it didn't end up being an issue.

At first we were fairly scared, but we found out that my DH's cousin had a daughter with it, as did another cousin's son. The drs said it can run in the family. All the kids had the same treatment route that Ian did, except the girl was in therapy for 2 years.
DH (44) ~~ Ian 2/22/07 37wks ~~ Kyle 12/30/03 23.6wks ~~ Konner (Twin Angel) 12/26/03, 23.3 wks
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May 30th, 2009, 11:37 PM
iamkc's Avatar Platinum Supermommy
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Kannon's is normal for his size-large for his age, but HE is large for his age!

Milo's is large...very. RSS kids have tiny, triangular faces, but forehead bossing, so it would already look big. However, he started life somewhere slightly above 10%, now he's 97+% for age. A month and a half ago (10.5 mos) he was at 48 or 49 cm. That's giant, especially considering how slowly his body has grown and where his head percentile started.

I wish I could answer about the closing of the fontanelle. I know that RSS kids have late-closing fontanelles and large ones. They don't really do anything about it other than watch it to make sure that nothing really changes with it. I don't know if Ava's case would be the same. Milo's ped never mentioned any concern about his fontanelle closing slowly, just said to keep an eye on it, make sure it makes any progress.

Has you rped said anything about Ava wearing a helmet? Is she just macro, or is she hydrocephalic as well?
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May 31st, 2009, 05:49 AM
Ditzzy's Avatar Stupid Lamb;)
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Ava's ped referred her to neurosurgery for her fontanel, so I guess she's concerned. I've had 4 doctors say something about it. I'm curious what neurosurgery will say.

She's macro, but doesn't have hydro.

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June 1st, 2009, 09:38 PM
Join Date: May 2009
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my daughter is micro right now at the 3rd percentile which is common with her deletion. shes only 2 months so dont really have anything to go by yet.
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June 2nd, 2009, 11:13 AM
~~~Sara~~~'s Avatar Platinum Supermommy
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Carter has microcephaly (small head) which is part of his syndrome, his head is not on the charts and at his 18 month checkup it was only 43cm

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