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Recent Diagnosis

[deleted account] ( 1 mom has responded )

My son was recently diagnosed. I first mentioned his head shape to my pediatrician at 4 months. They diagnosed him with torticollis and said to just reposition him at night. At his 9 month visit I brought it up again. This time his head was much flatter in the back, his forehead protruded on the same side, and his ears were unaligned. The doctor said, "Well it looks like torticollis but it is probably too late for therapy...you should've brought it to our attention before." EXCUSE ME!! I did. She said it was never documented in his file. That was it for me, I seeked council of another doctor. Within 2 weeks I took him to a new doctor that immediately diagnosed him with craniosynostosis. Good news, he did say that it was mild. Bad news, he said his original ped should have caught it. My doc said to lets watch it for a while to see if it gets worse, he is scheduled for May 12th follow up. However, I can't get passed the mis-shapened head. I keep having these horrible visions of it getting worse, or him being teased endlessly as a child, or going bald as an adult and it being horrible for him. Am I crazy? Does anyone have experience with mild craniosynostosis?

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Melyssa - posted on 04/09/2009

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My son was born with with Metopic Synostosis (his forehead was fused together before he was born) and was diagnosed at 4 months. His forehead was protruded and had a ridge in the front of it. Have you consulted with a neurologist? It might be a good idea. I have never heard of a mild craniosynostosis, not to say that it's not possible. My son was very lethargic, but I thought he was just a good baby. Turns out he had Hydrocephalus (water on the brain) as a result of the craniosynostosis and had to have a shunt placed. It might be wise to take him to Nuerosurgeon and have a CT scan done to make sure there isn't any pressure on the brain or that the brian isn't inhibited in it's growth. Let me know how it goes or if I can be of any help. Good luck! Take care!



-Melyssa

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