Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Hi Charlotte & welcome to our group! You made one statement in your post that concerns me a bit. You say that you cannot find a soft spot on your daughter's head. I am not trying to scare you, but when you cannot find a soft spot along with your daughter's misshaped head, that could be a sign of craniosynostosis. " Cranio " is premature fusion of the skull bones. Has your Dr. recommended a CTscan or Xrays to see if her sutures are still open or closed? Many of us in the group child has had a CTscan or Xrays done prior to getting a helmet or band. Plagiocephaly & craniosynostosis are very similar, however the treatment for both is extremely different. Cranio can only be treated thru surgery. Plagio can be treated with a helmet or a band and no surgery. I would highly recommend you call your pediatrician and ask for a CTscan or Xray (CTscans are the better of the two procedures though to rule out cranio) just to be safe! My daughter had Xrays done to be safe as well. http://www.plagiocephaly.org/support Check out this webpage for information mainly on plagio but there is also some craniosynostosis infromation as well. Also check out http://www.cappskids.org for additional plagio & cranio information. If it is in fact plagiocephaly, you can still get results with an " active " style band even at an " older " age. My daughter who had severe plagio began her DOCband treatment at 11.5 mos but we were still able to achieve very good correction. Welcome again to our group. Please let us know whatever you decide to do & what you might find out from you pediatrician. Best of luck. Debbie Abby's mom DOCGrad MI > My husband and I just returned from China with our 13 month old > adopted daughter--who is large for her age at 25 lbs and 31 inches > with no soft spot that I can find. She is happy and bright but her > head is very mishapened and her ears are not aligned. We suspect > positional plagiocephaly. Our pediatrician did not seem concerned > but after researching this topic on the internet we feel we should > see a specialist. It is so difficult to sift through the viewpoints > to find the truth. What could happen if this condition is left > untreated? Will helmets and bands work at 13--almost 14 months? When > is surgery warranted? Your feedback would be very much apprecaited. > Many thanks, > Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Hi Charlotte and welcome to the group! We have another mom in here who adopted her daughters from China as well! Hopefully she will see your post and chime in here. I have to agree with Debbie that you should try to get CT scans done to see if the soft spot has fused prematurely. If that is the case, that's when surgery is warranted. But if the soft spot and sutures are still open, then you can have considerable rounding with a band. Since your daughter is at an older age, you would have more success with either a DOCband or STARband since they have a dynamic, or active, design to them. Whereas, locally made helmets are of a passive nature. A lot of the members here had to deal with pediatricians who didn't take their concerns seriously. Call your ped and demand that they take you seriously, demand that they give you a referral to a specialist to get those scans done. There is no greater advocate for your child than you. Where are you located Charlotte? There might be some members here in your area that can direct you to doctors who are knowledgeable on plagio. Good luck to you, and please keep us updated! Niki Kaylie & Danny (STAR grads) Phila., PA > My husband and I just returned from China with our 13 month old > adopted daughter--who is large for her age at 25 lbs and 31 inches > with no soft spot that I can find. She is happy and bright but her > head is very mishapened and her ears are not aligned. We suspect > positional plagiocephaly. Our pediatrician did not seem concerned > but after researching this topic on the internet we feel we should > see a specialist. It is so difficult to sift through the viewpoints > to find the truth. What could happen if this condition is left > untreated? Will helmets and bands work at 13--almost 14 months? When > is surgery warranted? Your feedback would be very much apprecaited. > Many thanks, > Charlotte Quote Link to comment Share on other sites More sharing options...
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