Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Sue, When I made my first visit to a neurosurgeon for my daughter's plagiocephaly, I was nervous too. I had done a lot of research on the subject and was completely convinced that a helmet was in order. My father suggested something that was very helpful: to write down my position for the doctor - a simple statement that if my daughter did indeed have plagiocephaly (and not craniosynostosis - fused sutures which are very unlikely but something that he/she will check for), and that repositioning was not having a dramatic effect, that a helmet was the best course of action. I did this even though my husband was able to come with me - because we were afraid that if started crying and things got too distracting or the doctor wanted to push us just to reposition that we might lose the precious moment to get the prescription and get on with it. You might find it useful to do this too. We actually handed the doctor a copy of our position statement to read while we kept a copy for ourselves. Keep it short and to the point. In addition remember that you need the neurosurgeon to verify that Colin's head shape issues are due to plagiocephaly, but once you get that reasurrance, if you have any trouble getting the prescription you could always got to your pediatrician for a prescription (as I think many members of this group have). But do try to get it for a faster start! Best Wishes for a successful appointment, - > That pretty much sums it up. We are seeing the ped neurosurg > tomorrow and I could not sleep at all last night! I had been doing > relatively well until then. My dh was going to come with me but now > he cannot. I really, really wanted the support from him in case the > Dr. pulls the " it's cosmetic " thing. Would any of you like to swing > on by Buffalo, NY to join me? lol I am not completely comfortable > with demanding the decision to band him myself. But as someone > mentioned, I do not want Colin to grow up and say " why didn't you do > anything? " I am so sad that he will have to wear it during the > hottest months of the year. I know many of you have gone thru this > before so perhaps you can help me snap out of this. I am very > grateful that it is a non-invasive treatment. I can't even decide > what pattern to get (I know, stupid). I am trying to put things in > perspective that there are much worse things in life. Thank you for > letting me vent. > > Sue (in need of a Valium) only kidding > Colin F. (brachy pending tx) 8.5 mos. > Buffalo, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 Sue, Just want to second Stephaine. Good luck tomorrow, let us know how it goes. > > That pretty much sums it up. We are seeing the ped neurosurg > > tomorrow and I could not sleep at all last night! I had been doing > > relatively well until then. My dh was going to come with me but now > > he cannot. I really, really wanted the support from him in case the > > Dr. pulls the " it's cosmetic " thing. Would any of you like to swing > > on by Buffalo, NY to join me? lol I am not completely comfortable > > with demanding the decision to band him myself. But as someone > > mentioned, I do not want Colin to grow up and say " why didn't you do > > anything? " I am so sad that he will have to wear it during the > > hottest months of the year. I know many of you have gone thru this > > before so perhaps you can help me snap out of this. I am very > > grateful that it is a non-invasive treatment. I can't even decide > > what pattern to get (I know, stupid). I am trying to put things in > > perspective that there are much worse things in life. Thank you for > > letting me vent. > > > > Sue (in need of a Valium) only kidding > > Colin F. (brachy pending tx) 8.5 mos. > > Buffalo, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2004 Report Share Posted June 8, 2004 So sorry to hear you are so nervous. I was also afraid the neurosurgeon would think it was no big deal. To my surprise, he recommended banding for my son, because he did notice facial symmetries. Just be ready with any questions in writing and go right doen the list, reading all of them if need be. It is nice when dh can come to such things. For me, even just the driving and such when I am going somewhere new and worried about my children is so distracting. Just nice to have him drive. I would have been anxious had he been unable to come with us for that appt. More empathy than help, but hugs are good too! On a lighter note, I chose a plain band, so dd and I could decorate it and change it with stickers. We did a great job with some safari animal stickers and borders and get comliments on it all the time! Fish will be next for the summertime! I find it adds some fun to it all. Best of luck and post back on how it all goes. Mish > That pretty much sums it up. We are seeing the ped neurosurg > tomorrow and I could not sleep at all last night! I had been doing > relatively well until then. My dh was going to come with me but now > he cannot. I really, really wanted the support from him in case the > Dr. pulls the " it's cosmetic " thing. Would any of you like to swing > on by Buffalo, NY to join me? lol I am not completely comfortable > with demanding the decision to band him myself. But as someone > mentioned, I do not want Colin to grow up and say " why didn't you do > anything? " I am so sad that he will have to wear it during the > hottest months of the year. I know many of you have gone thru this > before so perhaps you can help me snap out of this. I am very > grateful that it is a non-invasive treatment. I can't even decide > what pattern to get (I know, stupid). I am trying to put things in > perspective that there are much worse things in life. Thank you for > letting me vent. > > Sue (in need of a Valium) only kidding > Colin F. (brachy pending tx) 8.5 mos. > Buffalo, NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2004 Report Share Posted June 9, 2004 Hello Sue Please let us know how the appointment went today Sandy Willow's Mom Torticollis resolved Cranio Germany Grad 02/04 > That pretty much sums it up. We are seeing the ped neurosurg > tomorrow and I could not sleep at all last night! I had been doing > relatively well until then. My dh was going to come with me but now > he cannot. I really, really wanted the support from him in case the > Dr. pulls the " it's cosmetic " thing. Would any of you like to swing > on by Buffalo, NY to join me? lol I am not completely comfortable > with demanding the decision to band him myself. But as someone > mentioned, I do not want Colin to grow up and say " why didn't you do > anything? " I am so sad that he will have to wear it during the > hottest months of the year. I know many of you have gone thru this > before so perhaps you can help me snap out of this. I am very > grateful that it is a non-invasive treatment. I can't even decide > what pattern to get (I know, stupid). I am trying to put things in > perspective that there are much worse things in life. Thank you for > letting me vent. > > Sue (in need of a Valium) only kidding > Colin F. (brachy pending tx) 8.5 mos. > Buffalo, NY Quote Link to comment Share on other sites More sharing options...
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