Guest guest Posted September 9, 2010 Report Share Posted September 9, 2010 *Who* wrote the prescription, after all? A negative nurse? I thought it had to be a doctor. Gosh, that would shed a whole new light on my outreach efforts -- in a good way -- nurses are already used to operating on a grass-roots basis. We received treatment almost as late as you -- or much later, if you disregard the bad helmet we received initially. For left-sided plagio, as well. Treatment had more of an effect on Clara's forehead than the back, presumably because the anterior fontanelle closes last. Six weeks prematurity *does* bear on that, so be sure to mention it. I wouldn't worry about 12 months of treatment, though -- you'll probably perceive that it's no longer working after 6 or 8. I'm definitely not happy with Clara's head today, but the cost/ benefit ratio is low on this, projecting forward an entire lifetime. And and the odds are astronomical that your experience will be worse than ours. It seems like a long time, but having a helmet is not nearly as much of a drag as problems that keep you up all night, like difficulty breastfeeding. Sometimes it even has positive ADL value, as protective gear. The cold season will mitigate the typical drawbacks of the adjustment period, rash and discomfort. So, I say, go for it! We didn't get a developmental delays diagnosis, but I often felt Clara was more attentive and alert when the helmet was tweaking her head. Many people think delays have to do with the frontal parts of the brain, so I would dare to hope for some special, non-cosmetic benefit there. Clara's thing was her wonky right eye. We just went to the optician, who tells us it's still not right, but it definitely used to be worse. (We were once blown off by a pediatric eye surgeon, too. We're hoping that what she got from the helmet will be enough to avoid having to find a different one.) -- Thad Launderville town, VT Clara age 2, STARband '10 On Sep 9, 2010, at 12:41 AM, critter lover wrote: > Ok, well I finally got my script for a Hanger band, where I have an > appointment next week to see how much it will cost or if they will > even do it. (I was reading a post they refuse after 16 months > somewhere else) The nurse basically said she wouldn't spend 2500$ > on something that probably wouldn't even help much if at all. My > child will 16 and a half months old. She was 6 weeks premature if > that means anything. *sigh* Sorry to say, yes she is my practice > child and if I ever have a second I will be much more abrupt in the > process. I really did put my my best foot forward in this though. > Btw, her diagnosis was plagio with developmental delays. My > daughter's ears are a bit misaligned and she has a flat side on her > left side which makes her hair insane and it scares me only when I > see it wetted down. She really is a beautiful girl regardless, but > I want to do right by her. We all deserve anything that helps us in > this life even if it's small. I don't want to be the reason she > can't join the swim team because of being made fun of or anything > like that. But am I a fool to torture her through 6-12 months of > treatment with something that won't help and severely put a cramp > on my credit card? > > I know I've asked before but I'm very unsure of myself. what would > you do or have you walked down this path? > > I can't believe the ped didn't just write the script months ago > when I asked for one instead of a 5 minute chat with a nurse with a > 2 hour drive 3 months down the road.. makes me wanna..cry really. > Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2010 Report Share Posted September 9, 2010 Thank you, Thad She did say something about her forehead protruding that I forgot to mention. She was an RN from a cranio facial specialist center. Can you believe they only "test" kids twice a month for this and that's why it took so long?? And the test was just eyeing her up. Oh and I am pretty sure one eye was smaller at one point but she didn't see that so figures it cured itself. My daughter hates her head touched so this will be an interesting endeavor. There was a lot of struggling and crying just to eye her up It's my fault.. I can't stand hard boogers as she use to stop breathing a lot when she was smaller due to them so I'm always picking her nose :x well only once a week really when she can't breathe. KimFrom: Thad Launderville <p38thadl@...>Plagiocephaly Sent: Thu, September 9, 2010 12:02:28 AMSubject: Re: finally got my script *Who* wrote the prescription, after all? A negative nurse? I thought it had to be a doctor. Gosh, that would shed a whole new light on my outreach efforts -- in a good way -- nurses are already used to operating on a grass-roots basis. We received treatment almost as late as you -- or much later, if you disregard the bad helmet we received initially. For left-sided plagio, as well. Treatment had more of an effect on Clara's forehead than the back, presumably because the anterior fontanelle closes last. Six weeks prematurity *does* bear on that, so be sure to mention it. I wouldn't worry about 12 months of treatment, though -- you'll probably perceive that it's no longer working after 6 or 8. I'm definitely not happy with Clara's head today, but the cost/ benefit ratio is low on this, projecting forward an entire lifetime. And and the odds are astronomical that your experience will be worse than ours. It seems like a long time, but having a helmet is not nearly as much of a drag as problems that keep you up all night, like difficulty breastfeeding. Sometimes it even has positive ADL value, as protective gear. The cold season will mitigate the typical drawbacks of the adjustment period, rash and discomfort. So, I say, go for it! We didn't get a developmental delays diagnosis, but I often felt Clara was more attentive and alert when the helmet was tweaking her head. Many people think delays have to do with the frontal parts of the brain, so I would dare to hope for some special, non-cosmetic benefit there. Clara's thing was her wonky right eye. We just went to the optician, who tells us it's still not right, but it definitely used to be worse. (We were once blown off by a pediatric eye surgeon, too. We're hoping that what she got from the helmet will be enough to avoid having to find a different one.) -- Thad Launderville town, VT Clara age 2, STARband '10 On Sep 9, 2010, at 12:41 AM, critter lover wrote: > Ok, well I finally got my script for a Hanger band, where I have an > appointment next week to see how much it will cost or if they will > even do it. (I was reading a post they refuse after 16 months > somewhere else) The nurse basically said she wouldn't spend 2500$ > on something that probably wouldn't even help much if at all. My > child will 16 and a half months old. She was 6 weeks premature if > that means anything. *sigh* Sorry to say, yes she is my practice > child and if I ever have a second I will be much more abrupt in the > process. I really did put my my best foot forward in this though. > Btw, her diagnosis was plagio with developmental delays. My > daughter's ears are a bit misaligned and she has a flat side on her > left side which makes her hair insane and it scares me only when I > see it wetted down. She really is a beautiful girl regardless, but > I want to do right by her. We all deserve anything that helps us in > this life even if it's small. I don't want to be the reason she > can't join the swim team because of being made fun of or anything > like that. But am I a fool to torture her through 6-12 months of > treatment with something that won't help and severely put a cramp > on my credit card? > > I know I've asked before but I'm very unsure of myself. what would > you do or have you walked down this path? > > I can't believe the ped didn't just write the script months ago > when I asked for one instead of a 5 minute chat with a nurse with a > 2 hour drive 3 months down the road.. makes me wanna..cry really. > Kim Quote Link to comment Share on other sites More sharing options...
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