Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi there, I have a few questions before I go on a crusade My son (12 weeks on 5/10) was just diagnosed with Plagio/Tort. I was terribly guilt ridden when my pediatrician walked into the office and pointed out my sons head flattening and I had to admit that I had only recently begun noticing him always looking to the left. After we met with the Physical Therapist at the Cranial Technologies office I told her how awful I felt about not noticing and she told me, " Don't beat yourself up about it, 90% of parents have this pointed out by their doctors " . I also read in an article posted in their office that 1 in 60 babies is diagnosed with Plagio since the inception of the " Back to sleep " program. Is it just me? or does this sound totally prevantable if parents were told about this at birth??? I realize not all parents would take this seriously, but I for one firmly believe that if I had KNOWN it was a common (and preventable) problem, I would have noticed either the Tort or the Plagio sooner, and been able to deal with it better. I am considering contacting insurance companies, hospitals, whoever necessary to see about sending new mothers home from the hospital with at least an informational pamplet on Plagio/Tort so that they can know of ways to avoid this completely...any advice? ideas? anyone wanting to help? I don't think the folks at DOC would take to kindly to this - since I believe this could all but put them out of business, so I won't bother approaching them Now, unfortunately, I feel like I'm torturing my poor son with these exercises and totally dreading the possibility of him having to wear a DOC band. I would love to hear of any success stories from parents who have avoided having their child fitted for a DOC band by the exercises and repositioning...I am being persistent (bordering on obsessive about this, to avoid the band). OOPS baby's waking from nap now and 4 1/2 year old needs a haircut. Thanks for any advice - input. Misha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Misha - I know how you feel. Not only were we not warned about plagio, we were specifically told to only lay Dane on his right side by the staff in the NICU (he had reflux). He was on an apnea monitor for 3.5 months so we could have even laid him on his stomach safely! This caused his plagio and tort. When he was 8 weeks old, the dr. just walked into the room and said " Why have you been lying this baby only on his right side? " It was that obvious to him without even touching Dane and I didn't even notice! I felt completely responsible. And then our journey began...We had some luck with repositioning for 2 months, but not enough. Good luck with the repositioning. It is so hard, particularly when they have tort to keep them off that side. They should warn parents of this. I am sure CT would agree! They are out to help our kids, not damage them! Dane's mom (DOC Band 2/14) > Hi there, > I have a few questions before I go on a crusade > > My son (12 weeks on 5/10) was just diagnosed with Plagio/Tort. > I was terribly guilt ridden when my pediatrician walked into the > office and pointed out my sons head flattening and I had to admit > that I had only recently begun noticing him always looking to the > left. > > After we met with the Physical Therapist at the Cranial Technologies > office I told her how awful I felt about not noticing and she told > me, " Don't beat yourself up about it, 90% of parents have this > pointed out by their doctors " . I also read in an article posted in > their office that 1 in 60 babies is diagnosed with Plagio since the > inception of the " Back to sleep " program. > > Is it just me? or does this sound totally prevantable if parents were > told about this at birth??? I realize not all parents would take > this seriously, but I for one firmly believe that if I had KNOWN it > was a common (and preventable) problem, I would have noticed either > the Tort or the Plagio sooner, and been able to deal with it better. > I am considering contacting insurance companies, hospitals, whoever > necessary to see about sending new mothers home from the hospital > with at least an informational pamplet on Plagio/Tort so that they > can know of ways to avoid this completely...any advice? ideas? anyone > wanting to help? I don't think the folks at DOC would take to kindly > to this - since I believe this could all but put them out of > business, so I won't bother approaching them > > Now, unfortunately, I feel like I'm torturing my poor son with these > exercises and totally dreading the possibility of him having to wear > a DOC band. I would love to hear of any success stories from parents > who have avoided having their child fitted for a DOC band by the > exercises and repositioning...I am being persistent (bordering on > obsessive about this, to avoid the band). > > OOPS baby's waking from nap now and 4 1/2 year old needs a haircut. > Thanks for any advice - input. > > Misha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2002 Report Share Posted May 7, 2002 Hi Misha & welcome to our group! We're glad to have you. Do NOT feel the least bit guilty about your son's condition. Especially being that he also has torticollis. Tort. is a leading cause of plagio & tort is completely unpreventable to my knowledge, BUT you are correct in saying plagio is often preventable. Many of our group members have tried very hard to get hospitals, prenatal classes, pediatricians to warn new parents about the potential of plagio happening as a result of the " back to sleep " campaign. Unfortunately, not many " professionals " listen to us and still don't take the time to fore-warn parents. It's really a shame. There have been articles in baby magazines discussing " flat heads " , but many of them play it off as no big deal & say the baby will outgrow it in time and/or their hair will cover up any flatness, which isn't always true. I am also sure that the people of Cranial Technologies wouldn't mind losing new clients if the cases of plagio decreased. Like replied, they are interested in all baby's well being . We wish you great luck with repositioning. We have several group members right now who are also trying aggressive repositioning in hopes to avoid the need for a band or helmet for their baby. Check out http://www.plagiocephaly.org/support for some great repositioning tips. Your son is at a good age to get results with repositioning alone. Don't feel like you're torturing him with the tort. exercises!!! He might not like them, but you're helping him in the long run. You're being a great mommy . What did Cranial Tech recommend? Are you going to their clinic for physical therapy for the tort? Good luck with repositioning, please keep us updated!!!! Welcome again. Debbie Abby's mom DOCGrad MI > > > > Hi there, > > I have a few questions before I go on a crusade > > > > My son (12 weeks on 5/10) was just diagnosed with Plagio/Tort. > > I was terribly guilt ridden when my pediatrician walked into the > > office and pointed out my sons head flattening and I had to admit > > that I had only recently begun noticing him always looking to the > > left. > > > > After we met with the Physical Therapist at the Cranial > Technologies > > office I told her how awful I felt about not noticing and she told > > me, " Don't beat yourself up about it, 90% of parents have this > > pointed out by their doctors " . I also read in an article posted > in > > their office that 1 in 60 babies is diagnosed with Plagio since > the > > inception of the " Back to sleep " program. > > > > Is it just me? or does this sound totally prevantable if parents > were > > told about this at birth??? I realize not all parents would take > > this seriously, but I for one firmly believe that if I had KNOWN > it > > was a common (and preventable) problem, I would have noticed > either > > the Tort or the Plagio sooner, and been able to deal with it > better. > > I am considering contacting insurance companies, hospitals, > whoever > > necessary to see about sending new mothers home from the hospital > > with at least an informational pamplet on Plagio/Tort so that they > > can know of ways to avoid this completely...any advice? ideas? > anyone > > wanting to help? I don't think the folks at DOC would take to > kindly > > to this - since I believe this could all but put them out of > > business, so I won't bother approaching them > > > > Now, unfortunately, I feel like I'm torturing my poor son with > these > > exercises and totally dreading the possibility of him having to > wear > > a DOC band. I would love to hear of any success stories from > parents > > who have avoided having their child fitted for a DOC band by the > > exercises and repositioning...I am being persistent (bordering on > > obsessive about this, to avoid the band). > > > > OOPS baby's waking from nap now and 4 1/2 year old needs a haircut. > > Thanks for any advice - input. > > > > Misha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Misha, My daughter is 11 weeks and we have been repositioning her for two weeks. Although I don't believe she has Tort, she does has a preference to lay on her flat side. We are going to PT for neck streches. Her first appt. is Thursday. I feel we are making great progress with repositioning. When playing on the floor she never lays on her flat spot. When sleeping she typically falls asleep on the middle of her head not the flat side. We try as much as possible to put her on her Tummy when awake but we don't always have much success. I am using a sleep positioner during the night. During the day I use the Boppy Nogin Nest (which is designed to keep pressure off the head) in her swing and bouncy seat. I also purchased the Boppy Tummy Time mat for her to play on but I think she is a little to small for it right now. I have found the sleep positioner and the Nogin Nest to be a great help in keeping Kayla off of her flat spot. Good luck and keep us posted as to your progress. Sincerely, Kathy New Member - NC Hi there,I have a few questions before I go on a crusade :)My son (12 weeks on 5/10) was just diagnosed with Plagio/Tort.I was terribly guilt ridden when my pediatrician walked into the office and pointed out my sons head flattening and I had to admit that I had only recently begun noticing him always looking to the left.After we met with the Physical Therapist at the Cranial Technologies office I told her how awful I felt about not noticing and she told me, "Don't beat yourself up about it, 90% of parents have this pointed out by their doctors". I also read in an article posted in their office that 1 in 60 babies is diagnosed with Plagio since the inception of the "Back to sleep" program.Is it just me? or does this sound totally prevantable if parents were told about this at birth??? I realize not all parents would take this seriously, but I for one firmly believe that if I had KNOWN it was a common (and preventable) problem, I would have noticed either the Tort or the Plagio sooner, and been able to deal with it better.I am considering contacting insurance companies, hospitals, whoever necessary to see about sending new mothers home from the hospital with at least an informational pamplet on Plagio/Tort so that they can know of ways to avoid this completely...any advice? ideas? anyone wanting to help? I don't think the folks at DOC would take to kindly to this - since I believe this could all but put them out of business, so I won't bother approaching them :)Now, unfortunately, I feel like I'm torturing my poor son with these exercises and totally dreading the possibility of him having to wear a DOC band. I would love to hear of any success stories from parents who have avoided having their child fitted for a DOC band by the exercises and repositioning...I am being persistent (bordering on obsessive about this, to avoid the band). OOPS baby's waking from nap now and 4 1/2 year old needs a haircut.Thanks for any advice - input.MishaFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hi Misha, I'm Annick, mom to , who is now 15 months old. We have succesfully repositioned him and are very happy with the results we got. got diagnosed at 2 months old with moderate plagio (flat spot, buldging forehead, misaligned ears, assymetry of the eyes and jaw), and we started repositioning him then. By four months old, we had seen some great improvement but still wanted to keep the helmet option open, and took an appointment to meet with the neurosurgeon in a months time. By the time turned 5 months old, we were so satisfied with the improvement we had seen that we chose not to use a helmet. At 5 months old, the neurosurgeon evaluated 's plagio to have went from moderate to mild. Now, there is only a tiny spot of flattening left but the rest has mostly corrected itself (even his ears are pretty much aligned), and even I have a hard time seeing it. Repositioning can bring on great results for some, and I wish you the best results with it. Congratulations on being consistent with it (I also believe it became an obsession for me at that time!! ; ), that is the best way to get great results. If you want to know more about our story and how we repositioned , you can check his plagio website: http://www.geocities.com/alittleone2000/plagiopage.htm Don't hesitate to ask if you have more questions. Annick Mtl, Canada I would love to hear of any success stories from parents > who have avoided having their child fitted for a DOC band by the > exercises and repositioning...I am being persistent (bordering on > obsessive about this, to avoid the band). > > OOPS baby's waking from nap now and 4 1/2 year old needs a haircut. > Thanks for any advice - input. > > Misha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Kathy & Annick, Thank you so much for posting your success with repositioning- we need more moms like you both to speak up that it can work for some kids and is a viable option in some cases. Great news that your kids are really doing well with all the hard work your doing!! Congrats to you for being great moms and please continue to share your valuable advice, tips and support for repositioners going through the motions as well!! ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Misha, Welcome to the group! I know exactly how you are feeling, my son was dx with tort at 8 weeks, but in hindsight (he is now 16 months) we learned that plagio actually started inutero as well as the tort, and not one Doc ever picked up on this when we discovered this as a problem at 4 months (even his 2 day old pic shows signs of plagio, but we didn't know what to look for either). We were sent for pt by 3 months and even before the 4 month I addressed my concerns about his facial asymmetry and ear misalignment, flatness, with my ped. She told us not to worry as well, and if I had not found this awesome group and educated myself, we would have not pushed for the band at 5 months and got great correction. The tort is especially hard to fight in repositioning, depending on the severity, but it is so essential in preventing any progression of plagio and has proven successful for other parents that have said repositioning alone worked in treating the problem- it wasn't the case for us due to many factors. Don't feel that you are torturing your child with the stretches, it does kill you to see them crying, but you are doing them a world of good by starting early and stretching out that muscle (we had our best stretches when he was conked out!). This tight muscle can cause problems with balance, facial asymmetry, usage of that side of the body, upper scoliosis, etc. I don't want to alarm you, just educate you, as tort is very fixable and treatable through hard work of pt, especially from yourselves. Good luck on your repositioning efforts and please email me if I can help you in anyway. Also check into www.torticolliskids for more tips and info on treating tort. My son's birthday is 1/10 - so we both have the 10th in common ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2002 Report Share Posted May 8, 2002 Hello Misha and welcome!! I think so many people here can really relate to your post. I know that I felt terribly guilty about my daughter's condition, then I just started feeling really mad that my ped hadn't warned me about repositioning! We didn't use a DOCband, but I've been in this group for 1.5+ years and most have nothing but praise for the DOCband. It may seem like " torture " , but believe me - it does not hurt your baby one bit. Most babies, in fact, adjust to the band almost immediately. It is the moms and dads that have the trouble!!! You have a good ped for pointing it out to you. We had to ask and ask and ask our ped about it and his answer was just wait it will round out. Wrong! After 4 months of asking he finally referred us and we got a helmet for . Good luck and keep us posted! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
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