By: NB

NB — Mon, 02 Nov 2009 18:05:34 +0000

Hello, my son (who is also a twin) had the same exact issue. His twin does not. I wanted to let you know that you are doing exactly what you are supposed to be doing! In my sons case they said he may need to have surgery to correct this issue. I was scared to death! His sutures showed no fusion as well. It is interesting to read your post because Joshua’s percentlile kept dropping at every visit…the same as your daughters did. The doctors were suspecting craniostenosis. It is when the head is not growing due to the sutures closing prematurly.They have sites on the web devoted to this I will list some below for you. We went and saw a Nuero surgeon at Cedars Sanai in Southern California he said he wanted to wait and see what happens, Since his head still “fit” his little frame. Well here we are and Joshua is now 3 and a half. He is still a little guy and his head is still on the small side, still in the 40% however he never needed surgery. We found out at 6 months that he has a genetic condition that is known to cause this sort of problem along with numerous others. It is called 22q deletion syndrome, a piece of his chromosome #22 is missing. Has she had any genetic testing done to rule out other issues? I dont want to freak you out more (lord knows your heart cant take it) but I did want to tell you from a mother who has been exactly in your shoes … that way you had some hope. We dont see any future head issues as far as growth goes due to the fact that his head is still growing REALLY SLOWLY! but so is his body. I will be wishing for the best for you and your family good luck!!http://cpmcnet.columbia.edu/dept/nsg/PNS…http://en.wikipedia.org/wiki/Craniosynos…

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By: NB