Guest guest Posted February 17, 2011 Report Share Posted February 17, 2011 Hi all, I've been reading a lot on your board and thank you all for sharing your experience and knowledge! This is precious and I just wish that I have known you earlier! My son Ethan is 16 months old. I noticed his weird head shape when he was only 3 months. But our PD kept telling us that his head is going to round out when he turns one. It didn't round out and was not even getting better. We then asked to see a specialist at CHOP, who told us there's nothing we could do at that time. Continued to be bothered by Ethan's head shape, slowly(I kicked myself for that part) but finally I tumbled into Cranialtech and then knew about this whole plagiocephaly thing which no doctor or specialist ever mentioned a word to me. We took Ethan to Cranialtech, Pamarus office for evaluation two days before and were told he has both plagiocephaly and brachycephaly and his asymmetry is 12mm. Not sure how accurate that is, but his degree is moderate and is still within treatment range. The tricky thing is that he's late and we need to manage our expectations. We decided to go ahead and give it a shot, knowing our insurance may not cover it at all and our PD still insists the band is not gonna help. But it seems obvious to us that it's the only thing we can do now and maybe the only chance given to correct our previous mistakes. His head was so round and cute from the last ultrasound photo and that's how it should've been. So here are my initial questions and I deeply deeply appreciate any of your advice! 1. Some of you said to get a good orthotist is very important. What makes a good orthotist? Can anyone who had experience with Cranialtech Pamarus office recommend us any good orthotis there? 2. Per your experience, what makes a good band? What are the things you would look for or check to make sure it's doing what it's claiming to do? 3. Anything that you wish you had known at the beginning or during the treatment? Thank you so much for reading this! Apple Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Hi Apple, Cranialtech in NJ has a very good reputation. Also I know babies that have worn bands at this age and the parents are happy with the results. They aren't getting 100% correction, but most feel that it is worthwhile. I would try and educate your doctor about plagio. Unfortunately many doctors give the excuse that it will " round out on its own " but that is not the case. Cranial banding does work and there are thousands(?) of parents on this site over the years who agree with this. My daughter wore her band from age 5 to 10 months with lots of improvement. We had a follow up visit at 14 months and there was more growth, but without the band the growth was all over, so no improvement in her overall head shape. I wish our doctor had known more about brachy when we asked about it at 2 months. Luckily when it was worse at 4 months she was willing to refer us to a specialist. That was 5 years ago, and many doctors are still in the dark giving bad advice. Let us know about the banding and results you see. -christine sydney, 5 yrs, starband grad > > Hi all, > > I've been reading a lot on your board and thank you all for sharing your experience and knowledge! This is precious and I just wish that I have known you earlier! > > My son Ethan is 16 months old. I noticed his weird head shape when he was only 3 months. But our PD kept telling us that his head is going to round out when he turns one. It didn't round out and was not even getting better. We then asked to see a specialist at CHOP, who told us there's nothing we could do at that time. Continued to be bothered by Ethan's head shape, slowly(I kicked myself for that part) but finally I tumbled into Cranialtech and then knew about this whole plagiocephaly thing which no doctor or specialist ever mentioned a word to me. > > We took Ethan to Cranialtech, Pamarus office for evaluation two days before and were told he has both plagiocephaly and brachycephaly and his asymmetry is 12mm. Not sure how accurate that is, but his degree is moderate and is still within treatment range. The tricky thing is that he's late and we need to manage our expectations. We decided to go ahead and give it a shot, knowing our insurance may not cover it at all and our PD still insists the band is not gonna help. But it seems obvious to us that it's the only thing we can do now and maybe the only chance given to correct our previous mistakes. His head was so round and cute from the last ultrasound photo and that's how it should've been. > > So here are my initial questions and I deeply deeply appreciate any of your advice! > > 1. Some of you said to get a good orthotist is very important. What makes a good orthotist? Can anyone who had experience with Cranialtech Pamarus office recommend us any good orthotis there? > > 2. Per your experience, what makes a good band? What are the things you would look for or check to make sure it's doing what it's claiming to do? > > 3. Anything that you wish you had known at the beginning or during the treatment? > > Thank you so much for reading this! > Apple > Quote Link to comment Share on other sites More sharing options...
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