Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 You would think they'd educate parents about plagiocephally. Although, my experience is that even if you start from day 1 with repositioning, alternating the head when they sleep, tummy time, etc. plagio can still happen. My 22 month old had left-sided plagio corrected with a DOC band. So when I found out I was pregnant with my 2nd son, I read up and asked lots of questions of how to prevent it the 2nd time. From day 1, I've been doing all the " right " things to prevent it yet around 5 weeks I noticed his head changing for the worse. The good thing with being educated on plagio is that I was able to catch it right away with my 2nd and hopefully will be able to avoid banding. For parents reading that and debating whether or not to band, I would still band again in a heartbeat. I am SO thankful we did with our 22 month old. It can be a little inconvenience especially when you have another child which is one reason I want to avoid it this time around. Also, some babies are more prone to needing a band no matter what you do. The flattening that my boys had was/is on opposite sides and they were facing opposite directions (at least at the 19 week ultrasound). I find that interesting. Oh, I don't know if which hand they use play into this or not but it appears that my 22 month old is left-handed which is which side was flat. Interesting, huh?!? Also, I know other babies that rarely were given tummy time and were on their backs all the time and they have a perfectly round head. I say all this to say please don't beat yourself up. Some kids are just more prone to it than others. lisa > > In 1992 the American Academy of Pediatrics started a program called > " Back to sleep " which encouraged parents to keep their infants on > their backs while sleeping instead of their front as had been > conventional wisdom. This reduced the risk of SIDS by nearly 40% but > increased the incidence of positional plagiocephaly by 600%. > > If this is the case why haven't more doctors informed parents of this? > My daughter was 6 weeks early, she slept a lot during the first three > months and I wish I had known about rotating her and side sleeping... > this problem is common in preemies. I feel guilty because this could > have been prevented. Although I may be doing something about it now, > I can't help feeling badly about it. Sigh. > > Apparently UCSF won't let me see the specialist without the referral. > Pediatrician wants me to try PT initially and to see if it'll round > out by itself before referring me. We have an appointment with CIRS > (without a referral), can they make proper diagnosis to rule out > craniosynostosis vs. positional plagio? What is your experience with > them and if I get an appointment with someone at UCSF it will be many > weeks later. uggh > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 CIRS can't give you a band without a prescription, but they can give you some good data to share with your doctor. They can probably tell you if they think cranio is possible, but they aren't the right experts. It might just make you feel better until a specialist takes a look. We went to CIRS in Palo Alto for my daughter's band. She had brachy (flat in back). We had Kaiser insurance, and saw a cranio facial plastic surgeon. He could tell from her head shape and feel that it was purely positional, so no cranio. Doctors are so ignorant about this! There is a petition to the AAP we want to submit when we get 10,000 signatures. Feel free to have your friends and family sign: http://www.petitiononline.com/0799/petition.html -christine sydney 2 yrs starband grad > > In 1992 the American Academy of Pediatrics started a program called > " Back to sleep " which encouraged parents to keep their infants on > their backs while sleeping instead of their front as had been > conventional wisdom. This reduced the risk of SIDS by nearly 40% but > increased the incidence of positional plagiocephaly by 600%. > > If this is the case why haven't more doctors informed parents of this? > My daughter was 6 weeks early, she slept a lot during the first three > months and I wish I had known about rotating her and side sleeping... > this problem is common in preemies. I feel guilty because this could > have been prevented. Although I may be doing something about it now, > I can't help feeling badly about it. Sigh. > > Apparently UCSF won't let me see the specialist without the referral. > Pediatrician wants me to try PT initially and to see if it'll round > out by itself before referring me. We have an appointment with CIRS > (without a referral), can they make proper diagnosis to rule out > craniosynostosis vs. positional plagio? What is your experience with > them and if I get an appointment with someone at UCSF it will be many > weeks later. uggh > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2008 Report Share Posted April 24, 2008 I was able to see CIRS Prosthetics & Orthotics they are the ones that scan and fit children for helmets. Luckily they were willing to see me and give me a base line to work with, they suggested I return for another measurement next month. If my pediatrician (PDM) is still reluctant then, we will definitely get another PDM. I am going to try the PT people again tomorrow and beg for an earlier date. And I'll call UCSF and say I want a second opinion and I will self-pay. That should give them enough incentive to let me see them. They are indeed a teaching hospital after all. Thanks for sharing your info, I'll keep you posted. - > > In 1992 the American Academy of Pediatrics started a program called > " Back to sleep " which encouraged parents to keep their infants on > their backs while sleeping instead of their front as had been > conventional wisdom. This reduced the risk of SIDS by nearly 40% but > increased the incidence of positional plagiocephaly by 600%. > > If this is the case why haven't more doctors informed parents of this? > My daughter was 6 weeks early, she slept a lot during the first three > months and I wish I had known about rotating her and side sleeping... > this problem is common in preemies. I feel guilty because this could > have been prevented. Although I may be doing something about it now, > I can't help feeling badly about it. Sigh. > > Apparently UCSF won't let me see the specialist without the referral. > Pediatrician wants me to try PT initially and to see if it'll round > out by itself before referring me. We have an appointment with CIRS > (without a referral), can they make proper diagnosis to rule out > craniosynostosis vs. positional plagio? What is your experience with > them and if I get an appointment with someone at UCSF it will be many > weeks later. uggh > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Which CIRS did you go to? How were the measurements that you got? Molly Novato, California Nicolas, 2.5, tort & plagio, STARband (CIRS Oakland) 4/24/06-9/12/06, Graduate! , 5 , 8.5 Re: red tape more bull I was able to see CIRS Prosthetics & Orthotics they are the ones that scan and fit children for helmets. Luckily they were willing to see me and give me a base line to work with, they suggested I return for another measurement next month. If my pediatrician (PDM) is still reluctant then, we will definitely get another PDM. I am going to try the PT people again tomorrow and beg for an earlier date. And I'll call UCSF and say I want a second opinion and I will self-pay. That should give them enough incentive to let me see them. They are indeed a teaching hospital after all. Thanks for sharing your info, I'll keep you posted. - > > In 1992 the American Academy of Pediatrics started a program called > " Back to sleep " which encouraged parents to keep their infants on > their backs while sleeping instead of their front as had been > conventional wisdom. This reduced the risk of SIDS by nearly 40% but > increased the incidence of positional plagiocephaly by 600%. > > If this is the case why haven't more doctors informed parents of this? > My daughter was 6 weeks early, she slept a lot during the first three > months and I wish I had known about rotating her and side sleeping... > this problem is common in preemies. I feel guilty because this could > have been prevented. Although I may be doing something about it now, > I can't help feeling badly about it. Sigh. > > Apparently UCSF won't let me see the specialist without the referral. > Pediatrician wants me to try PT initially and to see if it'll round > out by itself before referring me. We have an appointment with CIRS > (without a referral), can they make proper diagnosis to rule out > craniosynostosis vs. positional plagio? What is your experience with > them and if I get an appointment with someone at UCSF it will be many > weeks later. uggh > ------------------------------------ For more plagio info Quote Link to comment Share on other sites More sharing options...
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