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12-31-2008, 03:03 AM
Amanda. I have a 10 month old son who has been diagnosed with right coronal craniosynostosis. He also has asymmetric mandible hypoplasia, which basically means his mandible is small and he may need surgery when he gets older. The doctors named off a couple random syndromes and defects he could possibly have, but we are still waiting on a consultation with genetics.
He has his first appointment with a pediatric neurosurgeon (Dr. Ahn at Johns Hopkins) on January 6th.
I thought I would be prepared for this, but I'm scared.
Hi Amanda, and welcome to this site. We all know how you are feeling, the first diagnosis and all the testing is a very scary time when you are fearing for your child's health.
My son was bi-coronal and has muenke (moon-kah) syndrome. Have they mentioned this as being a possibility with your son? I am sure a thousand names are going through your head.
The good thing is you don't have to wait much longer on your appointment with the NS. Start writing down any and all questions and concerns that you have that you want to discuss and ask. I think we had 2 pages when we went in for our first consult.
There is also some great guides in the Testing and Surgery Section with lists of questions you may want to ask/need to know.
We are here for you ever step of the way, to vent, cry, scream, and that glorious day when you will be rejoicing being thru with surgery.
12-31-2008, 09:51 AM
Hi! Welcome to CK! I'm sorry you are facing this journey, but take some comfort in that all of our children have done amazingly well! John's Hopkins is a great hospital and I promise you will be amazed at how well he recovers. YOu'll find an inner strength you never knew you had too. Glad you found us...lean on us whenever you need/like.
12-31-2008, 12:38 PM
Welcome Amanda and congratulations on your new baby! Sorry to hear about the diagnosis, the waiting, and the uncertainty. Our son has/had left coronal. There are lots of parents here with coronal and even more parents whose children have gone through surgery and come out with flying colors!
Many parents have children with syndromes too so be sure to visit the Syndrome forum to read more.
We are with you on this. Please feel free to post any questions, concerns, vents, rants, whatever. We love to see baby and family photos too...if you feel comfortable, go ahead and post so pix of your little guy!
12-31-2008, 12:44 PM
Hi Amanda. I'm sorry that you're going through the cranio journey. My son has mild metopic cranio that is part of a genetic syndrome. Our family goes to one of the genetics teams at Hopkins. I'm glad you are set up to see Dr. Ahn. My son's primary neurosurgeon is Dr. Carson. We've spent a lot of time in the hospital this month for other brain conditions/issues (not cranio related) that my son has and Dr. Ahn came to see us several times each day. He is very kind and knowledgable. He has taken his time to explain things to me and answer all my questions. You and your son are in good hands.
12-31-2008, 12:48 PM
Welcome to CK! But very sorry that you had to find us. I know that this is a very scary time for you and your family. I'm so glad you don't have long to wait for your 1st consult. I agree, get all your questions down on paper because once the door closes, most of us are dumb struck and forget everything we wanted to ask. All the children do so well with the corrective surgery, so take that to heart. They bounce right back and it's ALWAYS harder on the parents then the child. Even the recovery time is quick, for something so severe. We're here to support you through every step of the way. There are no dumb questions here so ask anything on your mind... Stay strong Mommy, your son is going to be just fine. Keep us posted and once again, glad you found us!
12-31-2008, 02:45 PM
Welcome to CK! Sorry you're facing surgery but at least you have found us! This place has become like my second "home" - these people have been my family for over a year.
01-01-2009, 09:41 PM
Hi Amanda, Welcome to Ck!!!
My son was born with left coronal. I was also very scared when I had found out he had it. Its amazing what dr's can do and will you be amazed at how fast your lil one bounces right back.
01-02-2009, 03:27 PM
Hi and :welcome
I'm glad you found craniokids. These women (and men!) are so helpful and amazing.
01-04-2009, 12:29 AM
Sorry you are on this journey, but you have found a great resource here! These folks have all been through a lot and are here to help those in need so at least you are not alone!! We all want to help in any way we can! Best Wishes and Happy New Year! Kristin
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