Guest guest Posted October 13, 2010 Report Share Posted October 13, 2010 Hi, We are rookies in this process, and will be seeing a pediatric neurosurgeon for the first time this Friday. Our 5-month old son was diagnosed with plagio, and this apptmt will be our first with a specialist. What sorts of questions should we be asking? Thanks, Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2010 Report Share Posted October 14, 2010 Get measurements. Even a specialist's opinion may be philosophically predetermined and uninformed. My hackles were raised by your subject line, so pardon me as I elaborate at length, based on the horrible experiences of parents like myself: You're receiving tertiary care, so you're further along in the process than you might think. Maybe your pediatrician is totally on the ball, and simply doesn't have enough facts or experience to execute treatment. Five months is a great age to get a helmet, if that's where this is going. Good age to catch craniosynostosis as well, if that's what they're unsure about. Many primary care physicians are qualified to make these determinations themselves, but this is fine. Your medical delivery system is just a little bit inefficient. OR MAYBE (worst-case scenario, don't be alarmed) the primary physician has known since birth that your child has a very straightforward case of moderate or severe plagiocephaly, and was unwilling to treat it because that is the dogma to which they were indoctrinated. So now they've made an unnecessary referral to someone just as ignorant but seemingly more authoritative, just to keep you from diverting insurance money to those scientifically corrupt charlatans who sell cranial remolding orthoses. Next comes the referral to physical therapy for non-existent " torticollis. " With every scheduling delay and ultimate dead-end, a bit of brick and mortar goes in the treatment window, until at 18 months, you hit the wall -- the head is still flat, and there are no good treatment options left. You then get angry and start seeing a family doctor, so the original pediatrician can continue to delude themselves that the plagiocephaly probably DID resolve spontaneously in the end, just like they knew it would. That's why you need " just the facts, " to find out if your baby is caught in this sort of backwater in the stream of medical progress. You can't make your doctor write a prescription, but the numbers can be held up to a more reasonable standard of care, as well as your insurance requirements. Then you can take charge, go straight to the orthotist for evaluation if necessary, and get a new doctor to write the prescription for a helmet while there is still time. Time is something you have plenty of, thankfully. Good for you, seeking help this early! -- Thad Launderville town, VT Clara age 2 1/2, STARband '10 On Oct 13, 2010, at 7:10 PM, Anne wrote: > Hi, > > We are rookies in this process, and will be seeing a pediatric > neurosurgeon for the first time this Friday. > > Our 5-month old son was diagnosed with plagio, and this apptmt will > be our first with a specialist. > > What sorts of questions should we be asking? > > Thanks, > Anne > > > > ------------------------------------ > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2010 Report Share Posted October 16, 2010 Anne, this comment is for you. As far as basic questions, you want to know measurements, such as diaganol differences. They will measure from right side of forehead to back left, then left side of forehead to back right. Whatever the difference is, is your diaganol difference. If it is greater than 10 mm, then your baby may need a helmet. You will want to ask about different practitioners in your area, such as Cranial Technologies, Hanger or STARband. Ask for a referrel to one of them and they will let you know the liklihood of whether you will need a helmet or not. At 5 months of age, you are out of the "repositioning" stage but just make sure your baby is not lying on the flat spot as much as possible. Good Luck and let us know how things went. in NC From: Thad Launderville <p38thadl@...>Plagiocephaly Sent: Thu, October 14, 2010 4:11:49 AMSubject: Re: 1st Apptmt Get measurements. Even a specialist's opinion may be philosophically predetermined and uninformed. My hackles were raised by your subject line, so pardon me as I elaborate at length, based on the horrible experiences of parents like myself:You're receiving tertiary care, so you're further along in the process than you might think. Maybe your pediatrician is totally on the ball, and simply doesn't have enough facts or experience to execute treatment. Five months is a great age to get a helmet, if that's where this is going. Good age to catch craniosynostosis as well, if that's what they're unsure about. Many primary care physicians are qualified to make these determinations themselves, but this is fine. Your medical delivery system is just a little bit inefficient.OR MAYBE (worst-case scenario, don't be alarmed) the primary physician has known since birth that your child has a very straightforward case of moderate or severe plagiocephaly, and was unwilling to treat it because that is the dogma to which they were indoctrinated. So now they've made an unnecessary referral to someone just as ignorant but seemingly more authoritative, just to keep you from diverting insurance money to those scientifically corrupt charlatans who sell cranial remolding orthoses. Next comes the referral to physical therapy for non-existent "torticollis." With every scheduling delay and ultimate dead-end, a bit of brick and mortar goes in the treatment window, until at 18 months, you hit the wall -- the head is still flat, and there are no good treatment options left. You then get angry and start seeing a family doctor, so the original pediatrician can continue to delude themselves that the plagiocephaly probably DID resolve spontaneously in the end, just like they knew it would.That's why you need "just the facts," to find out if your baby is caught in this sort of backwater in the stream of medical progress. You can't make your doctor write a prescription, but the numbers can be held up to a more reasonable standard of care, as well as your insurance requirements. Then you can take charge, go straight to the orthotist for evaluation if necessary, and get a new doctor to write the prescription for a helmet while there is still time.Time is something you have plenty of, thankfully. Good for you, seeking help this early!-- Thad Laundervilletown, VTClara age 2 1/2, STARband '10On Oct 13, 2010, at 7:10 PM, Anne wrote:> Hi,>> We are rookies in this process, and will be seeing a pediatric > neurosurgeon for the first time this Friday.>> Our 5-month old son was diagnosed with plagio, and this apptmt will > be our first with a specialist.>> What sorts of questions should we be asking?>> Thanks,> Anne>>>> ------------------------------------>> For more plagio info Quote Link to comment Share on other sites More sharing options...
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