Special Needs


I havnt been on here since my daughter was about 2 months old. Does anyone here have a child diagnosed with Schizencephaly?
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Re: Schizencephaly

  • I just wanted to hop in and say hi & welcome back.  I don't recall seeing any other schizencephaly moms, you may be the previous one i'm thinking of.  

    We met a little girl at the eye dr at WVU when P was about 7 months old, who had this.  She seemed like a very normal baby on the outside, I can't quite remember how old she was.  I think she was 11 months but small for her age.  I know the dad told me a little about it and I really didn't know much about it at the time, except that P had plagiocephaly & brachycephaly.

    How is your LO doing? 

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

  • Thank you! Shes doing very well. Shes 9 months now and doing a million times better then they said she would. She is about 3 months behind on milestones. Her hypertonia is pretty bad but she sees OT and PT and ABM for it. Shes small for her age as too. Well, shes tall, but on the thinner side. And her head is in the 2 percent so she has microcephaly too
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  • Hi. There is a Facebook group called parents of kids with neurological issues (or disorders) that I frequent, and there are parents of children with schizencephaly on it. My DS has hypoplasia of the corpus callosum and microcephaly.
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