Hoping to hear stories from people who have had their children tested for craniosynostosis. How did you go about getting the testing done, and if you were given a diagnosis, what happened then? Surgery?
Hoping to hear stories from people who have had their children tested for craniosynostosis. How did you go about getting the testing done, and if you were given a diagnosis, what happened then? Surgery?
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2 Replies
We had an xray to confirm drs suspicions. Ds was diagnosed at 3 months. Surgery at 13 months at the rch in melbourne. We were lucky and our dr knew what it was.
Prof David David who is based in Adelaide is a world leading specialist in cranio.
Once you have a referal most surgeons will do a ct to confirm the severity and the suture affected.
Surgery is usually the only option but is 100% necessary in my opinon.
There are also a few fb groups that have lots of experienced mums and mums in the same boat.
I hope I've helped and good luck! It's a scary road but worth it in the end!
Hi. My son has been through it. The community health nurse picked it up when she measured his head at 4 mths. She said to go to the gp, and he referred us on to the Royal Children's Hospital in Brisbane. We were seen quickly by them and they took x-rays to confirm the diagnosis. His skull was fused at the front. Operation was sceduled then postponed but finally went ahead at 13mths. One week of recovery in the hospital then we went home. Back to daycare a couple of weeks later. Now he's 7, and we have check ups every second year. All good, no dramas. I wish all the best for your journey xx