Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hello all, First I have to thank all of you for sharing your stories and experiences. I think it's so important that a forum like this exists. It's helped me make sense of everything and it's comforting to realize one is not alone. I've been a part of this group since January '08, after my son was diagnosed with mild plagio (right side) at about 12 weeks of age, by his GP. She said his case was mild and just to give him more tummy time. Of course he hated this and I was often in tears myself as he cried and struggled, feeling guilt at " allowing " his plagio to develop in the first place. When he was born, no one had told me to alternate his position in the crib, to give him tummy time from the outset. I felt like it was my fault. I had asked for a referral to Sick Kids (I live in TOronto) but my GP said " they were very busy " and since my son's case was so mild she didn't want to refer him. We got a boppy noggin nest, an exercise mat with head pillow, a sleep positioner, and ALWAYS put him on his left side for naps and at night. I used a Baby Bjorn for outings (we don't own a car so he was rarely in the carseat). And kept plugging away with tummy time. I posted in March I think about repo advice and night repositioning. At his 4-month checkup we finally convinced the GP to refer us to a PT at Sick Kids for an assessment and for help with repo. On April 1 he was seen and the PT said he didn't have torticollis, and that his plagio was very mild and in her professional opinion he would not need a helmet and that it would resolve itself. This was a relief. She said if we did decide to go with a helmet we should contact Orthotics around 7 months of age. We had seen a lot of improvement with repo but his ears were still slightly misaligned, slight asymmetry in his eyes and flattening was still noticeable, especially from the bird's-eye view. But by seven months I thought, rather than take the risk and have faith it would resolve itself, why not just do the helmet? It would only be for 3-4 months, and we'd make sure the plagio would be corrected. We saw the orthotist on Monday. The first thing she said when she saw us in the waiting room was " he looks great! " . Then in the examining room she felt his head and examined him and told us his case was very mild. She explained that a helmet works best on cases that are more severe, and since my son only needs " refining " , a helmet would probably not make much of a difference if at all. She also reiterated how much more growing his head is going to go through. She said in her experience parents of children with his mildness " usually " don't opt for a helmet. She was essentially neutral though, and was clear it was OUR decision. She seemed to weigh towards not recommending one, but said we had the option of getting one. I should say that the orthotist was wonderful and we trust her opinion. In light of our visit husband feels we shouldn't get one...but part of me doesn't want to look at my son years from now, if he still has asymmetry, and say to myself " why didn't I do something " ? In my heart I think I don't want to get him a helmet, since in the last three months we've seen a lot of improvement, and we hope that with him being upright more of the time now (I highly recommend Jumperoos!) it will get better. And perhaps part of me has to let go of the guilt... Thanks for reading this far! I needed to share this all with you since I have drawn a good deal of comfort from this group and I think all of you are very brave. Any thoughts you'd like to share would be appreciated. Tara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Hello Tara! Boy oh boy, your story sounds very similar to ours! I can so relate to the "lets wait to see what happens" suggestions by both our GP and the Pediatrician. Also with it being clear that it was "OUR" decision whether to band or not. My husband was more definate as to not wanting to do it, and I was more for it. As time went on we did not see much improvement with our son's Plagio on his left side and it seemed to get worse. He has just now gotten his helmet at 10 months old. We are still in the first week of use. My daughter also went through a mild case of Plagio with Torticolis, but hers seemed to resolve itself enough that we didn't have to 'band'. I believe that these things can resolve themselves in cases like your son's as well, just depends. In the case of my son, it did not - but he had some other issues of hip displacement at birth and had to be in a full body brace for the first 2 1/2 months of his life - he was "stuck" in one position all the time. I too remember going through the positioning strategies, my son hating it on his tummy, me feeling anxious about the whole thing, and somehow the guilt associated with it all. I still have some anxiety about the whole thing, but now that I understand more, I realize there are many things that can contribute to why a baby can have Plagio and Assymetry issues. Sounds like you have been doing everything in your power to help your son. It is difficult as a parent to set aside the guilt. There is so much pressure from everywhere to do what's "right" and "best" for our babies, and I think sometimes we just can't keep up. It can be very overwhelming and exhausting. Take heart and hang in there. By the way - we love the Jumperoo too!! My son goes crazy in it! ;o) Shari Mom to: Nolan (10 months - Left Plagio, Assymetry)Olivia (2 1/2 years - torticolis resolved, Mild Plagio resolved) From: tajd2007 <taabraha@...>Subject: tough decisionPlagiocephaly Received: Thursday, June 19, 2008, 10:37 AM Hello all,First I have to thank all of you for sharing your stories andexperiences. I think it's so important that a forum like this exists.It's helped me make sense of everything and it's comforting torealize one is not alone. I've been a part of this group since January '08, after my son wasdiagnosed with mild plagio (right side) at about 12 weeks of age, byhis GP. She said his case was mild and just to give him more tummytime. Of course he hated this and I was often in tears myself as hecried and struggled, feeling guilt at "allowing" his plagio to developin the first place. When he was born, no one had told me to alternatehis position in the crib, to give him tummy time from the outset. Ifelt like it was my fault. I had asked for a referral to Sick Kids (I live in TOronto) but my GPsaid "they were very busy" and since my son's case was so mild shedidn't want to refer him.We got a boppy noggin nest, an exercise mat with head pillow, a sleeppositioner, and ALWAYS put him on his left side for naps and at night.I used a Baby Bjorn for outings (we don't own a car so he was rarelyin the carseat). And kept plugging away with tummy time. I posted inMarch I think about repo advice and night repositioning.At his 4-month checkup we finally convinced the GP to refer us to a PTat Sick Kids for an assessment and for help with repo. On April 1 hewas seen and the PT said he didn't have torticollis, and that hisplagio was very mild and in her professional opinion he would not needa helmet and that it would resolve itself. This was a relief. Shesaid if we did decide to go with a helmet we should contact Orthoticsaround 7 months of age. We had seen a lot of improvement with repo but his ears were stillslightly misaligned, slight asymmetry in his eyes and flattening wasstill noticeable, especially from the bird's-eye view.But by seven months I thought, rather than take the risk and havefaith it would resolve itself, why not just do the helmet? It wouldonly be for 3-4 months, and we'd make sure the plagio would be corrected.We saw the orthotist on Monday. The first thing she said when she sawus in the waiting room was "he looks great!". Then in the examiningroom she felt his head and examined him and told us his case was verymild. She explained that a helmet works best on cases that are moresevere, and since my son only needs "refining", a helmet wouldprobably not make much of a difference if at all. She also reiteratedhow much more growing his head is going to go through. She said inher experience parents of children with his mildness "usually" don'topt for a helmet. She was essentially neutral though, and was clearit was OUR decision. She seemed to weigh towards not recommendingone, but said we had the option of getting one. I should say that theorthotist was wonderful and we trust her opinion.In light of our visit husband feels we shouldn't get one...but part ofme doesn't want to look at my son years from now, if he still hasasymmetry, and say to myself "why didn't I do something"? In my heartI think I don't want to get him a helmet, since in the last threemonths we've seen a lot of improvement, and we hope that with himbeing upright more of the time now (I highly recommend Jumperoos!) itwill get better. And perhaps part of me has to let go of the guilt...Thanks for reading this far! I needed to share this all with yousince I have drawn a good deal of comfort from this group and I thinkall of you are very brave. Any thoughts you'd like to share would beappreciated.Tara Looking for the perfect gift? Give the gift of Flickr! 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Guest guest Posted June 19, 2008 Report Share Posted June 19, 2008 Tara, You must have read my mind!! Both of my daughter's pediatricians said the same thing. When we were trying to get the insurance to cover her band the first doctor actually yelled at my husband in front of all her other patients and told him it was cruel to put a band on a child. My daughter has been wearing hers just fine. She doesn't cry, pull at it or anything of the such. You have to decide what is right for your child. Do you feel that your child would benefit? If you've been seeing progress then it sounds like your instincts have been right so far. If you do decide to use one then rest assured it won't hurt your baby. Lots of luck in your decision. Tammy Mother of 8 months plagio & brachy > > From: tajd2007 <taabraha@...> > Subject: tough decision > Plagiocephaly > Received: Thursday, June 19, 2008, 10:37 AM > > > > > > > Hello all, > > First I have to thank all of you for sharing your stories and > experiences. I think it's so important that a forum like this exists. > It's helped me make sense of everything and it's comforting to > realize one is not alone. > > I've been a part of this group since January '08, after my son was > diagnosed with mild plagio (right side) at about 12 weeks of age, by > his GP. She said his case was mild and just to give him more tummy > time. Of course he hated this and I was often in tears myself as he > cried and struggled, feeling guilt at " allowing " his plagio to develop > in the first place. When he was born, no one had told me to alternate > his position in the crib, to give him tummy time from the outset. I > felt like it was my fault. > > I had asked for a referral to Sick Kids (I live in TOronto) but my GP > said " they were very busy " and since my son's case was so mild she > didn't want to refer him. > > We got a boppy noggin nest, an exercise mat with head pillow, a sleep > positioner, and ALWAYS put him on his left side for naps and at night. > I used a Baby Bjorn for outings (we don't own a car so he was rarely > in the carseat). And kept plugging away with tummy time. I posted in > March I think about repo advice and night repositioning. > > At his 4-month checkup we finally convinced the GP to refer us to a PT > at Sick Kids for an assessment and for help with repo. On April 1 he > was seen and the PT said he didn't have torticollis, and that his > plagio was very mild and in her professional opinion he would not need > a helmet and that it would resolve itself. This was a relief. She > said if we did decide to go with a helmet we should contact Orthotics > around 7 months of age. > > We had seen a lot of improvement with repo but his ears were still > slightly misaligned, slight asymmetry in his eyes and flattening was > still noticeable, especially from the bird's-eye view. > > But by seven months I thought, rather than take the risk and have > faith it would resolve itself, why not just do the helmet? It would > only be for 3-4 months, and we'd make sure the plagio would be corrected. > > We saw the orthotist on Monday. The first thing she said when she saw > us in the waiting room was " he looks great! " . Then in the examining > room she felt his head and examined him and told us his case was very > mild. She explained that a helmet works best on cases that are more > severe, and since my son only needs " refining " , a helmet would > probably not make much of a difference if at all. She also reiterated > how much more growing his head is going to go through. She said in > her experience parents of children with his mildness " usually " don't > opt for a helmet. She was essentially neutral though, and was clear > it was OUR decision. She seemed to weigh towards not recommending > one, but said we had the option of getting one. I should say that the > orthotist was wonderful and we trust her opinion. > > In light of our visit husband feels we shouldn't get one...but part of > me doesn't want to look at my son years from now, if he still has > asymmetry, and say to myself " why didn't I do something " ? In my heart > I think I don't want to get him a helmet, since in the last three > months we've seen a lot of improvement, and we hope that with him > being upright more of the time now (I highly recommend Jumperoos!) it > will get better. And perhaps part of me has to let go of the guilt... > > Thanks for reading this far! I needed to share this all with you > since I have drawn a good deal of comfort from this group and I think > all of you are very brave. Any thoughts you'd like to share would be > appreciated. > > Tara > > > > > > > > > > > > > > > > > __________________________________________________________________ > Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new . Click on Options in Mail and switch to New Mail today or register for free at http://mail..ca > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 Tara, I have read your story many times and I can feel every piece of it. What is your son's name? Are his pictures posted anywhere? I just took my 5 months old daughter to CT this Wednesday without a referral from her pediatrician. Unlike you I didn't trust their opinion. I have posted her pictures on the M folder under Maysa (pictures 89 and 90). I am curious to see what a mild case looks like. We also have an appointment with ECA next Wednesday. Hopefully thing will go better and we can then make a final decision. (My husband doesn't want her in a helmet either) Thanks for sharing your story, Leila, mother of Maysa 5 months old, right tort, brachy-plagiocephaly From: tajd2007 <taabraha@...>Subject: tough decisionPlagiocephaly Date: Thursday, June 19, 2008, 10:37 AM Hello all,First I have to thank all of you for sharing your stories andexperiences. I think it's so important that a forum like this exists.It's helped me make sense of everything and it's comforting torealize one is not alone. I've been a part of this group since January '08, after my son wasdiagnosed with mild plagio (right side) at about 12 weeks of age, byhis GP. She said his case was mild and just to give him more tummytime. Of course he hated this and I was often in tears myself as hecried and struggled, feeling guilt at "allowing" his plagio to developin the first place. When he was born, no one had told me to alternatehis position in the crib, to give him tummy time from the outset. Ifelt like it was my fault. I had asked for a referral to Sick Kids (I live in TOronto) but my GPsaid "they were very busy" and since my son's case was so mild shedidn't want to refer him.We got a boppy noggin nest, an exercise mat with head pillow, a sleeppositioner, and ALWAYS put him on his left side for naps and at night.I used a Baby Bjorn for outings (we don't own a car so he was rarelyin the carseat). And kept plugging away with tummy time. I posted inMarch I think about repo advice and night repositioning.At his 4-month checkup we finally convinced the GP to refer us to a PTat Sick Kids for an assessment and for help with repo. On April 1 hewas seen and the PT said he didn't have torticollis, and that hisplagio was very mild and in her professional opinion he would not needa helmet and that it would resolve itself. This was a relief. Shesaid if we did decide to go with a helmet we should contact Orthoticsaround 7 months of age. We had seen a lot of improvement with repo but his ears were stillslightly misaligned, slight asymmetry in his eyes and flattening wasstill noticeable, especially from the bird's-eye view.But by seven months I thought, rather than take the risk and havefaith it would resolve itself, why not just do the helmet? It wouldonly be for 3-4 months, and we'd make sure the plagio would be corrected.We saw the orthotist on Monday. The first thing she said when she sawus in the waiting room was "he looks great!". Then in the examiningroom she felt his head and examined him and told us his case was verymild. She explained that a helmet works best on cases that are moresevere, and since my son only needs "refining", a helmet wouldprobably not make much of a difference if at all. She also reiteratedhow much more growing his head is going to go through. She said inher experience parents of children with his mildness "usually" don'topt for a helmet. She was essentially neutral though, and was clearit was OUR decision. She seemed to weigh towards not recommendingone, but said we had the option of getting one. I should say that theorthotist was wonderful and we trust her opinion.In light of our visit husband feels we shouldn't get one...but part ofme doesn't want to look at my son years from now, if he still hasasymmetry, and say to myself "why didn't I do something"? In my heartI think I don't want to get him a helmet, since in the last threemonths we've seen a lot of improvement, and we hope that with himbeing upright more of the time now (I highly recommend Jumperoos!) itwill get better. And perhaps part of me has to let go of the guilt...Thanks for reading this far! I needed to share this all with yousince I have drawn a good deal of comfort from this group and I thinkall of you are very brave. Any thoughts you'd like to share would beappreciated.Tara Quote Link to comment Share on other sites More sharing options...
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