My name is Karen, we have just had our 4th child in July 2007. Shortly after Kiara was born I had noticed that her right eye looked swollen and doctors agreed when it did not resolve I had done some investigating on the internet when I found Ptosis. That is what she was diagnosed with and had surgery in October 2007 to lift her lid. In the mean time I had noticed she was not smiling during sleep or during theday while awake and did not seem interested with her enviroment although she cooed. When I had brought this up at the pediatric opthamologist's office she suggested that we have an MRI performed, thinking it may be cortical blindness - to which seemed like she had all the symptoms. The MRI showed she had Dandy Walker and complete agenesis of the corpus callosum, microcephaly. What is the prognosis for Kiara with ACC, DWS and ptosis - are they considered associated anomalies. Thank you for any help.
Hi karen, my name is cindy and i too had a daughter july 2007 Lacy :) she too had alot of the same problems as ur daughter but a few more complactions. Lacy passed away March 1st 2011 she was 3 1/2. my only advice to u is we were givin these children for either a life time or a small amount of time...spent everyday with kiara as if it is ur guys's last day...thats how it was for me i jus put her to sleep and woke up the next day and she was gone.....
Hey to you two I am new to the dandy walker syndrome, I have been diagnose myself by a neurosurgeon a few days ago I am 24 and I just started a new group on facebook and was looking for some new people, would love to talk to both of ya'll some more like I said I am knew so still learning about it.
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