Harry is 22 months old. He han't had a jaw distraction. The specialsits at the RCH have said that he doesn't need one and possibly not at all as, his chin/jaw area is growing. If he does need one however, we are more than happy for him to have one for his health and well being are far more important than us being scared for him. After having his cleft repaired, we know that he's a strong little boy and can cope with anything.
Please dont be in a hurry to have surgery. Brad is now 12 years old and we decided to hold off surgery until he was older. It is now obvious that surgery is not required. Our kids have enough to deal with, surgery is only an option not a necessary in all cases.
my daughter didn't have a jaw distraction and she is now 6, and her jaw looks pretty good.
I also had PRS and my jaw grew out by about 5 or 6. However my brother still had a small lower jaw until about 8.
My little niece who has sticklers with a small jaw, had a distraction to aid her airway. Nothing else was working for her, so that was their last resort.
to me, I think the distraction is good if their is airway issues otherwise I would just wait and see how the jaw grows on his own.
Thanks everyone for your advice. It was great to read your own stories about jaw distractions. With Harry, his jaw has grown and is hardly noticeable. A lot of people we know don't know about his jaw unless we mention it and they have a really good look. We will definately not be asking his specialists for a distraction. His airway issues are fine. He only snores when he has a cold. He does however still sleep on his back. Sometimes, during the night, when we check on him, he is sound asleep on his back but, his breathing is fine!
Hi everyone, I have a small question to ask sort of related to jaw distractions. If your child hasn't had one, is your child able to sleep on their back? Harry still sleeps on his tummy. This is still a concern to us and want to know that if in say one year's time when Harry will be three, and he wants to sleep on his back, what will his airways be like? If anyone can offer any advice, that would great!
Hi Michelle,<br /> Brad was on CPAP from the age of 9 months until he was about 10yo. While it was horrible to start him on this machine, it was definately the best thing for him, his sleep improved but it also enabled him to move around becasue we were guaranteed open airway. The machine became part of our lives ( sometimes I still miss it ) it gave us peace of mind and not only did brad sleep better so did we.
Hi guys, Just wanted to throw my two bob in. Balin has recently undergone Jaw distraction surgery and although we had a terrible experience with it- everything went wrong with a 10 day proceedure becoming 3 1/2 months - i believe it was the best thing for Balin. We did not see Cpap as an option for Balin. Due to naso-gastric feeding for 12 months he has a fear of anything touching his face. It would not have been managable. Balin had severe obstructive apnoea and now post surgery, not a peep! Yes, it was hard. Yes, do not proceed unless you are 100% certain. In hindsight however, we feel that had we had the proceedure earlier on at 2-3 months of age instead of 3 years of age, we would not have had the troubles we experienced recently. The surgery has come a long way, there is still a ways to go, but it is definately more advanced than in years past. Just another opinion. xo
Hello - our son had the Jaw distraction when he was two months old - he had not even been home from hospital then. For him it was the right thing to do - his surgery went well - the only downside was that he became addicted to the morphine and had to have reduced doses over a one month period. The op meant he no longer needed cpap and for him that was wonderful as it was playing havoc with the skin on his face. Now he has been free of the feeding tube for 6 months and is learning to drink from a cup. We could not be more proud of our little boy - who just turned 1.
Patricia Hi Michelle, I know you're query is 2yrs ago. Just wondering how little Harry is going? Does he sleep on his back now. Our daughter was born in May 2011 and wasnt diagnosed with PRS until I took her to the cleft palate clinic and mention that I didnt think her breathing was normal. Then she was diagnosed. She had a sleep study and it showed her oxygen levels dropped to 50% whilst on her back and other positions. She had severe airway obstruction and failure to thrive, she was losing weight even though she was feeding but her body was working so hard to breathe she was burning too many calories therefore she had to have jaw distraction surgery otherwise she would never have survived. She now sleeps on her back since her surgery 4mths ago. She goes in Feb to have another Sleep Study to see how her breathing has improved.
I would ask to have a sleep study done if you havent already had one just for peace of mind and that will tell you whether Harry is getting enough oxygen whilst on his back or not.
