Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Barbara, What type of specialist did you see? Did he/she suggest helmet or band therapy and give you a time estimate of how long therapy would last? What factors are leading you to the decision to not go with some type of treatment program? i.e. Financial, Ethical? > I posted a similar message to this one once before, but didn't have > much response, so I thought I would try again. Thanks in advance for > any information you may have. > > My husband and I are very curious to hear about parents who have > elected NOT to treat their child's plagiocephaly, particularly > children who had a relatively mild or moderate case. We're especially > interested to hear about untreated children who are about two years > old or older to see how their " flatness " has rounded out. Are the > parents happy with their decision? Why did they make the choice they > did? Any information you have, anecdotal or otherwise would be > greatly appreciated. (By " otherwise " , i.e., information on > controlled experiments comparing treated children to non-treated > children, which seem very hard to find.) > > A little background information about our son, , and our > situation and feelings to date. is almost 10 months old and has > " mild to moderate " plagiocephaly (our phrasing, as well as the > specialist who looked at his head). We have ruled out > craniosynostosis and are now just weighing the pros and cons of > treatment vs. non-treatment of the plagio. The back of 's head > is pretty flat, but most people who we talk to about this (just about > everyone we know) says they probably wouldn't have noticed it if we > hadn't brought it to their attention. When you DO bring it to their > attention, though, it IS noticeable, i.e., you don't have to > really search to find it -- it's obviously flat. Also, his head is a > little pointy, where the back is higher than the front. NEVER has a > stranger commented about it. In fact, strangers often come up and say > how cute he is, like strangers tend to do with all babies. And this > is even, for instance, in restaurants, when he's in an open high > chair and his full head is clearly visible, not just the front of it. > I say all this as a means of demonstrating that I don't think > strangers really notice it. The big question for me is whether > or not kids will make fun of it later and/or if he will be bothered > by it himself later. And, even if kids do tease him, won't they > always find something to latch on to and make fun of? I'm sure we > were all made fun of as children for one dumb thing or another. My > husband and I both feel largely that we want to let our son be the > way he is, which is not perfect, but pretty near to it in our minds > (as most kids are to their own parents, I'm sure). But we are still > so uncertain, and we need to make a decision very soon. Every time we > think we've made one, we waiver again shortly after. > > Thank you so much for taking the time to read all this and for any > information you may have. > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Hi Barbara, I, too, am interested in this very issue. As you may have read, I am having trouble with the helmet which was recently made for my (almost 10 month old) son, Jack. From your description of 's head shape, it would appear that Jack's is exactly the same. My husband and I are now weighing whether we should try to get another type of helmet made or let nature take its course. For approximately the past month and a half, Jack has been sleeping on his side. Perhaps his head will round out (at least a little) on its own but we're not expecting that it will completely reshape. I also have some of the same feelings as you regarding what might happen when Jack gets older and his head may not be as round as the other kids. Will he be upset with us that we didn't do anything more? I'm really torn. I'd be very interested in hearing what decision you come to. Also, thank you for reposting this. Time is really of the essence for us given Jack's age. Best of luck to you and your family. Kathleen > I posted a similar message to this one once before, but didn't have > much response, so I thought I would try again. Thanks in advance for > any information you may have. > > My husband and I are very curious to hear about parents who have > elected NOT to treat their child's plagiocephaly, particularly > children who had a relatively mild or moderate case. We're especially > interested to hear about untreated children who are about two years > old or older to see how their " flatness " has rounded out. Are the > parents happy with their decision? Why did they make the choice they > did? Any information you have, anecdotal or otherwise would be > greatly appreciated. (By " otherwise " , i.e., information on > controlled experiments comparing treated children to non-treated > children, which seem very hard to find.) > > A little background information about our son, , and our > situation and feelings to date. is almost 10 months old and has > " mild to moderate " plagiocephaly (our phrasing, as well as the > specialist who looked at his head). We have ruled out > craniosynostosis and are now just weighing the pros and cons of > treatment vs. non-treatment of the plagio. The back of 's head > is pretty flat, but most people who we talk to about this (just about > everyone we know) says they probably wouldn't have noticed it if we > hadn't brought it to their attention. When you DO bring it to their > attention, though, it IS noticeable, i.e., you don't have to > really search to find it -- it's obviously flat. Also, his head is a > little pointy, where the back is higher than the front. NEVER has a > stranger commented about it. In fact, strangers often come up and say > how cute he is, like strangers tend to do with all babies. And this > is even, for instance, in restaurants, when he's in an open high > chair and his full head is clearly visible, not just the front of it. > I say all this as a means of demonstrating that I don't think > strangers really notice it. The big question for me is whether > or not kids will make fun of it later and/or if he will be bothered > by it himself later. And, even if kids do tease him, won't they > always find something to latch on to and make fun of? I'm sure we > were all made fun of as children for one dumb thing or another. My > husband and I both feel largely that we want to let our son be the > way he is, which is not perfect, but pretty near to it in our minds > (as most kids are to their own parents, I'm sure). But we are still > so uncertain, and we need to make a decision very soon. Every time we > think we've made one, we waiver again shortly after. > > Thank you so much for taking the time to read all this and for any > information you may have. > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Hi Barbara, I, too, am interested in this very issue. As you may have read, I am having trouble with the helmet which was recently made for my (almost 10 month old) son, Jack. From your description of 's head shape, it would appear that Jack's is exactly the same. My husband and I are now weighing whether we should try to get another type of helmet made or let nature take its course. For approximately the past month and a half, Jack has been sleeping on his side. Perhaps his head will round out (at least a little) on its own but we're not expecting that it will completely reshape. I also have the some of the same feelings as you regarding what might happen when Jack gets older and his head may not be as round as the other kids. Will he be upset with us that we didn't do anything more? I'm just really torn. I'd be very interested in hearing what decision you come to. Also, thank you for reposting this. Time is really of the essence for us given Jack's age. Kathleen > I posted a similar message to this one once before, but didn't have > much response, so I thought I would try again. Thanks in advance for > any information you may have. > > My husband and I are very curious to hear about parents who have > elected NOT to treat their child's plagiocephaly, particularly > children who had a relatively mild or moderate case. We're especially > interested to hear about untreated children who are about two years > old or older to see how their " flatness " has rounded out. Are the > parents happy with their decision? Why did they make the choice they > did? Any information you have, anecdotal or otherwise would be > greatly appreciated. (By " otherwise " , i.e., information on > controlled experiments comparing treated children to non-treated > children, which seem very hard to find.) > > A little background information about our son, , and our > situation and feelings to date. is almost 10 months old and has > " mild to moderate " plagiocephaly (our phrasing, as well as the > specialist who looked at his head). We have ruled out > craniosynostosis and are now just weighing the pros and cons of > treatment vs. non-treatment of the plagio. The back of 's head > is pretty flat, but most people who we talk to about this (just about > everyone we know) says they probably wouldn't have noticed it if we > hadn't brought it to their attention. When you DO bring it to their > attention, though, it IS noticeable, i.e., you don't have to > really search to find it -- it's obviously flat. Also, his head is a > little pointy, where the back is higher than the front. NEVER has a > stranger commented about it. In fact, strangers often come up and say > how cute he is, like strangers tend to do with all babies. And this > is even, for instance, in restaurants, when he's in an open high > chair and his full head is clearly visible, not just the front of it. > I say all this as a means of demonstrating that I don't think > strangers really notice it. The big question for me is whether > or not kids will make fun of it later and/or if he will be bothered > by it himself later. And, even if kids do tease him, won't they > always find something to latch on to and make fun of? I'm sure we > were all made fun of as children for one dumb thing or another. My > husband and I both feel largely that we want to let our son be the > way he is, which is not perfect, but pretty near to it in our minds > (as most kids are to their own parents, I'm sure). But we are still > so uncertain, and we need to make a decision very soon. Every time we > think we've made one, we waiver again shortly after. > > Thank you so much for taking the time to read all this and for any > information you may have. > > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2000 Report Share Posted September 29, 2000 Hi Barbara!I have not posted in so long, but I still read messages hear andthere. I came across your message and it really hit home. I will giveyou a brief background. My son will be 15 months October 1. AtChristmastime, he was about 5 months, is when I first noticed aflatness to the back of his head. When he was at his 6 month wellvisit, our ped noticed that his fontanelle had closed early. He gotx-rays and told us to come in once a month to check his headmeasurement. Well his head wasn't growing like the doctor thought itshould. He sent us to a neurologist. So started our journey with him,a plastic surgeon, a CT scan, back and forth, a second opinion from apediatric neurosurgeon and finally to where we are now. In short,they thought he might have crainiosynostosis. That was ruled outfinally by our second opinion, who also told us that if washis son, he would not put him in a helmet. This was an emotionalrollercoaster for me. I had the same fellings you did. People willlook at him funny, kids will make fun of him and so on. I wanted toput him in the helmet. My husband however didn't want to " put himthrough that " doen't have a classic case of plagio. His headis not like a parallelogram. The flatness is right, straight on theback of his head. Also it is mild, but it is noticeable. But fromwhen this all ended, which was about January or February 2000, hishead has improved. You can still tell, but when I tell people whohave never seen him before, they say they would never have known. I'mhoping it keeps getting better. He's perfectly healthy, happy and hishead is fine. I wish you all the luck with your decisions. Whateveryou decide, I'm sure it will be because that is what you feel isbest. I'd love to hear from you as far as what you decide.Hope to hear from you.Vicky > I posted a similar message to this one once before, but didn't have> much response, so I thought I would try again. Thanks in advancefor> any information you may have.> > My husband and I are very curious to hear about parents who have> elected NOT to treat their child's plagiocephaly, particularly> children who had a relatively mild or moderate case. We'reespecially> interested to hear about untreated children who are about two years> old or older to see how their " flatness " has rounded out. Are the> parents happy with their decision? Why did they make the choicethey> did? Any information you have, anecdotal or otherwise would be> greatly appreciated. (By " otherwise " , i.e., information on> controlled experiments comparing treated children to non-treated> children, which seem very hard to find.)> > A little background information about our son, , and our> situation and feelings to date. is almost 10 months old and has> " mild to moderate " plagiocephaly (our phrasing, as well as the> specialist who looked at his head). We have ruled out> craniosynostosis and are now just weighing the pros and cons of> treatment vs. non-treatment of the plagio. The back of 's head> is pretty flat, but most people who we talk to about this (justabout> everyone we know) says they probably wouldn't have noticed it if we> hadn't brought it to their attention. When you DO bring it to their> attention, though, it IS noticeable, i.e., you don't have to> really search to find it -- it's obviously flat. Also, his head isa> little pointy, where the back is higher than the front. NEVER has a> stranger commented about it. In fact, strangers often come up andsay> how cute he is, like strangers tend to do with all babies. And this> is even, for instance, in restaurants, when he's in an open high> chair and his full head is clearly visible, not just the front ofit.> I say all this as a means of demonstrating that I don't think> strangers really notice it. The big question for me is whether> or not kids will make fun of it later and/or if he will be bothered> by it himself later. And, even if kids do tease him, won't they> always find something to latch on to and make fun of? I'm sure we> were all made fun of as children for one dumb thing or another. My> husband and I both feel largely that we want to let our son be the> way he is, which is not perfect, but pretty near to it in our minds> (as most kids are to their own parents, I'm sure). But we are still> so uncertain, and we need to make a decision very soon. Every timewe> think we've made one, we waiver again shortly after.> > Thank you so much for taking the time to read all this and for any> information you may have.> > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 2000 Report Share Posted September 30, 2000 Thanks for all the replies so far (and keep them coming!!) Just wanted to answer a few of your questions. - Our reasons for leaning toward non-treatment are mostly ethical. To sum it up, it's something like this: Are we just inflicting our own and society's vanity on him by trying to make his head perfect? It's not what I would call " abnormal " by any means -- if it were, we would certainly do something about it. If we fix this, I'm sure there will still be a myriad of other potentials for children, and later, adults, to tease and criticize. We just can't protect him from all of society's ills. Unfortunately, he has to learn (and we have to teach him) one of society's lessons and teach him to feel confident about himself despite a few flaws, which we all have, and that people will inevitably bring up. We think: If his nose were crooked, would we fix that? If he sings off-key, would we fix that? If he remains skinny (like he is now), will we go to extraordinary means to try to fatten him up? Etc., Etc. - The specialist that looked at him was a cranio-facial plastic surgeon who deals with plagio on a regular basis. He ruled out cranio and assured us it was not a medical problem. He said that, in his opinion, he would fix it if it were his son, and that it would probably take about 4 months of wearing a band. Of course, it's not his son. At first, that comment really got to us, but as we weighed it more heavily, and gave it time to sink in, we realized that, other than his medical opinion, his opinion on whether or not to treat is just one more person's opinion. Whatever we decide, we will still be seeing the specialist, to check on his progress and make sure everything continues to be medically okay, for several months or more. - Whether or not he decides he wants to shave his head later has crossed my mind, and I've given that considerable thought. I guess my thinking there is that that's a very good point, but that we can't let that weigh more heavily than what we feel is philosophically or ethically right (if we could only figure that out for sure). We've noticed some pretty strangely-shaped shaven heads lately, especially as we've watched the olympic male swimmers, that we would never have given more than a second's thought to if we hadn't been attuned to it, becuase of our own personal dilemma. I think that covers most of your questions. Thanks so much for all of your advice. As you can see, we're still leaning heavily against treatment, but I will send a posting when we've decided for sure. We hope to make a final decision this weekend. Thanks Again!! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 One question -- what is TMJ? > > I posted a similar message to this one once before, > > but didn't have > > much response, so I thought I would try again. > > Thanks in advance for > > any information you may have. > > > > My husband and I are very curious to hear about > > parents who have > > elected NOT to treat their child's plagiocephaly, > > particularly > > children who had a relatively mild or moderate case. > > We're especially > > interested to hear about untreated children who are > > about two years > > old or older to see how their " flatness " has rounded > > out. Are the > > parents happy with their decision? Why did they > > make the choice they > > did? Any information you have, anecdotal or > > otherwise would be > > greatly appreciated. (By " otherwise " , i.e., > > information on > > controlled experiments comparing treated children to > > non-treated > > children, which seem very hard to find.) > > > > A little background information about our son, , > > and our > > situation and feelings to date. is almost 10 > > months old and has > > " mild to moderate " plagiocephaly (our phrasing, as > > well as the > > specialist who looked at his head). We have ruled > > out > > craniosynostosis and are now just weighing the pros > > and cons of > > treatment vs. non-treatment of the plagio. The back > > of 's head > > is pretty flat, but most people who we talk to about > > this (just about > > everyone we know) says they probably wouldn't have > > noticed it if we > > hadn't brought it to their attention. When you DO > > bring it to their > > attention, though, it IS noticeable, i.e., you don't > > have to > > really search to find it -- it's obviously flat. > > Also, his head is a > > little pointy, where the back is higher than the > > front. NEVER has a > > stranger commented about it. In fact, strangers > > often come up and say > > how cute he is, like strangers tend to do with all > > babies. And this > > is even, for instance, in restaurants, when he's in > > an open high > > chair and his full head is clearly visible, not just > > the front of it. > > I say all this as a means of demonstrating that I > > don't think > > strangers really notice it. The big question for me > > is whether > > or not kids will make fun of it later and/or if he > > will be bothered > > by it himself later. And, even if kids do tease > > him, won't they > > always find something to latch on to and make fun > > of? I'm sure we > > were all made fun of as children for one dumb thing > > or another. My > > husband and I both feel largely that we want to let > > our son be the > > way he is, which is not perfect, but pretty near to > > it in our minds > > (as most kids are to their own parents, I'm sure). > > But we are still > > so uncertain, and we need to make a decision very > > soon. Every time we > > think we've made one, we waiver again shortly after. > > > > Thank you so much for taking the time to read all > > this and for any > > information you may have. > > > > Barbara > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Mrs. Cleveland: Where are you located? Are you close to a Cranial Tech center (on their web site they list doctors who are familiar with the band?) Maybe someone here has experience in your area. Sue Luck ----- Original Message ----- From: Cleveland <OpheliaBlue@...> <Plagiocephalyegroups> Sent: Saturday, September 30, 2000 11:11 AM Subject: Re: Re: Still Looking... > So Far We Still Have Not Found A Doctor To Help Our Situation. Is Six Months Old Now And Though His Head Is Still Flat In The Back It Seems To be Rounding Out A Bit Even Though This Is True I Am Still Actively Seeking A Doctor So i Can Start Helmet Therapy. > Mrs Cleveland > > > > Get your FREE Email and Voicemail at Lycos Communications at > http://comm.lycos.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Don't worry, I didn't feel I had to justify my opinions, I just wanted to keep people informed and answer your questions. Thanks, Barb > Barbara, > You need to do what is best for your family. I hope you didn't feel > like you had to justify your opinions to us! Granted, most of us in > the group have opted to treat but I think I speak for all of us when > I say that I really respect your decision not to. You just have to > follow your heart and your gut! > > Best of luck to you and please do keep us posted on how you all are doing! > Sharon & Evan (11-22-99) > > > > >Thanks for all the replies so far (and keep them coming!!) > > > >Just wanted to answer a few of your questions. > > > >- Our reasons for leaning toward non-treatment are mostly ethical. > >To sum it up, it's something like this: Are we just inflicting our > >own and society's vanity on him by trying to make his head perfect? > >It's not what I would call " abnormal " by any means -- if it were, we > >would certainly do something about it. If we fix this, I'm sure > >there will still be a myriad of other potentials for children, and > >later, adults, to tease and criticize. We just can't protect him > >from all of society's ills. Unfortunately, he has to learn (and we > >have to teach him) one of society's lessons and teach him to feel > >confident about himself despite a few flaws, which we all have, and > >that people will inevitably bring up. We think: If his nose were > >crooked, would we fix that? If he sings off-key, would we fix that? > >If he remains skinny (like he is now), will we go to extraordinary > >means to try to fatten him up? Etc., Etc. > > > >- The specialist that looked at him was a cranio-facial plastic > >surgeon who deals with plagio on a regular basis. He ruled out > >cranio and assured us it was not a medical problem. He said that, in > >his opinion, he would fix it if it were his son, and that it would > >probably take about 4 months of wearing a band. Of course, it's not > >his son. At first, that comment really got to us, but as we weighed > >it more heavily, and gave it time to sink in, we realized that, other > >than his medical opinion, his opinion on whether or not to treat is > >just one more person's opinion. Whatever we decide, we will still be > >seeing the specialist, to check on his progress and make sure > >everything continues to be medically okay, for several months or > >more. > > > >- Whether or not he decides he wants to shave his head later has > >crossed my mind, and I've given that considerable thought. I guess > >my thinking there is that that's a very good point, but that we can't > >let that weigh more heavily than what we feel is philosophically or > >ethically right (if we could only figure that out for sure). We've > >noticed some pretty strangely-shaped shaven heads lately, especially > >as we've watched the olympic male swimmers, that we would never have > >given more than a second's thought to if we hadn't been attuned to > >it, becuase of our own personal dilemma. > > > >I think that covers most of your questions. Thanks so much for all > >of your advice. As you can see, we're still leaning heavily against > >treatment, but I will send a posting when we've decided for sure. We > >hope to make a final decision this weekend. > > > >Thanks Again!! > > > >Barbara > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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