Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 I have been told by two pediatricians and the crani clinic people that my baby's head will " round out " . It has been four months and he is now nine months old and it looks exactly like it did when they made their predictions. I'm not waiting until it's too late. We are getting help from the DOC band people in April. I would be interested in knowing how many of these mild and moderate children who were turned away from helmeting actually did. Where their parents satisfied with the " natural results " ? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 's Mom: I do not know your specific situation, nor am I your doctor, but as you have read from countless people on this site alone, doctors have been wrong. I'm glad to hear that you are seeking a second opinion. I was sorry to hear that your doctor so firmly stated that there would be no side effects from the plagio. I think it is wrong for him/her to make such a solid statement on something that is so new that many doctors have not even HEARD of this condition. Although I don't think there has been any concrete solid proof that plagio. causes long term problems with site, speech, etc. (as many of us here have discussed in the past) I myself am not taking any chances. There have been studies done that suggest several long term problems. Also, if you check the cranial tech. site and click on their info. link, check their "on-line brochure". There is a picture in there that shows a 3-D CT scan of a 7(?)month old baby with plagio. Next to it is another 3-D picture of the same baby at 19 months (no band/helmet was used). You can see that there is absolutely NO change in this child's head shape. I understand that all situations are different and you did mention that your son's case is mild, so please don't feel as though I'm trying to make you feel guilty. All I am saying is to please be sure. If your doctor's all agree that treatment is not necessary, then maybe they are right. Just remember that you know your baby best, so if you are comfortable with their decision, then it's probably the right one. Good luck. I know it's so much to think about. I think most of us have had many sleepless nights thinking about it. Kendra bthornton@... wrote: From: bthornton@... We saw a pediatrician in Vancouver. He said that is mild. He is symmetrical in the lining up of his facial features and his ears when you look at him face on. He said he has seen worse cases. HE only knows of two children that have been "banded" and compared banding to fixing children's feet with bars back a few years ago. Back then it was common to see children with bars to correct their feet but now we rarely see it because they found out that they were intervening on something that would correct naturally. I also read a study on natural correction versus orthotics and the results were very comparable. I feel like I'm between a rock and a hard place. I don't want to have to be in a head band but I want his skull to be corrected and am concerned about other related problems. The ped tells me it won't affect hearing and vision or speech. I am seeing another ped on Wed. and I am almost certain he will say the same thing. did have x-rays and we should have the results end of this week. Does anyone know of any children that had plagio and did not get a band but their heads became more symmetrical with age? I would be interested in any input. Thanks, 's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 << I also read a study on natural correction versus orthotics and the results were very comparable. >> Where did you read this? We are trying natural correction and I can tell it is working. Jenna's is a VERY mild case. Her ears are fine and her forehead does not protruded. I think we caught it just in time. Her head is really evening out. It is slightly higher on the right side, but even that is starting to even out. Trust me when I say we have been aggressive! I do not let her put pressure on the flat side, EVER! I have been doing this for 1 month. She now sleeps on the opposite side, and she spends a lot of time in her walker (her feet don't touch the ground yet, but she likes to sit in it and play with the toys). I personally believe repositioning can and will work for children with VERY mild plagio. Now, if it is more severe, I don't know, I know I would want the band if her ears were off or her forehead protruded. Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 << We positioned Hanna AGGRESSIVELYfor 2 months and saw NO change. & nbsp; Then again, she was put into thesevere category. Kendra >> Yes Kendra, I think if it were severe, it would not be working. It has taken a month of affessively repositioning to even start to correct a very mild case. So, I can see that a month would do nothing for a severe case. Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 << affessively >> I am cracking up over here......I do know how to spell aggressively. I guess my hands were on the wrong keys! Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 << Thank you for your input. I'm just curious to find out how old your daughter is. is 8 months old and I'm just concerned that we maybe don't have the time to try natural correction. >> Jenna will be 4 months on April 10th, so we caught it early. The doctor mentioned it to me at her 2 month appointment, he told me to put rolls under her right shoulder so she wouldn't make that side any flatter. Well, I didn't think much about what he said, until I stumbled across this site a few weeks later. That is when I started being aggressive and it has worked. So, I started at about 2 1/2 months old and it is just now starting to round out. I don't know about it working on older babies, seems like it would be harder to keep them off of their favorite side because they are more mobile. Jenna isn't even rolling over yet and she is starting to get used to sleeping on the other side now and doesn't seem to mind it. Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 In a message dated 3/30/00 9:14:46 AM Pacific Standard Time, lpaquin@... writes: << He said the way he can tell if something needs correction is if he knows a child is in later years going to come in and ask him to fix a problem >> And please do tell, how do they correct it when the are older? Did you pose that question to your doctor? Surgery? Granted I don't know severe or mild your baby's plagio. is, but perhaps he is doing you a grave disservice is his criticalness of the doc band therapy, (and I am assuming also helmet therapy). I wish you all the best, but please take into account the time line associated with getting into doc or helmet therapy. Also, does your baby have torticollis (tight neck muscle)? If yes, you should get a referral to a physical therapist to help strengthen his weak neck muscles. You can do the exercises at home, but under the instruction of a dr or p/t. If your baby's ears are in alignment & you don't notice any bossing, perhaps your dr is correct. Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Karla- A while ago you were looking for a referral to a Calif doctor, did you find a neurologist you like? What does he/she say now about your baby's plagio? Congratulations on the repositioning! We were aggressive also for 1 month, but unfortunately for us it did not work. Just a side note, given with only warm & sincere wishes/intentions, please check from above your baby's ear alignments. I didn't even realize that Abby's were not aligned until I looked at her head from above. If they are not aligned, the one thing a doc band could do for your baby (aside from additional correction in back), is restrict any continued growth forward (the forehead) that contributes to the ears moving out of alignment. Best wishes! Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 << A while ago you were looking for a referral to a Calif doctor, did you find a neurologist you like? What does he/she say now about your baby's plagio? >> I got a list of names, but was waiting until her 4 month appointment to talk to her pediatrician. He was the one who pointed it out to me and told me to start repositioning her (which I didn't do for 2 more weeks because I thought he was overly concerned, thank goodness I found this site and realized how serious it could be). I have checked her so many times from above and her ears are fine, so is her forehead. I think with Jenna, it pushed her head up on the right side, instead of out. Does that make sense? This is why I always say the right side is higher when looking at her straight on. Well, the sides are lining up now. I will see her pediatrician on April 10th and see what he thinks, but I am feeling good about it. Thanks for asking! I'll keep you all posted, she is just starting to get to the age where she wiggles out of my contraptions, so I am glad we had 1 month to keep her how we wanted her! Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 This is what my pediatrician said about the leg braces. You don't happen to be in Colorado do you? I went to the neurosurgeon last week and he said he had a moderate case and you could not tell any asymmetry from the front. He said IT IS NOT A PROBLEM. He said the DOC people are really strong marketers and are getting a lot people worked up for nothing. He said his head will correct some and the little bit of remaining imperfection will be minimized because his face will grow into his head. He said the way he can tell if something needs correction is if he knows a child is in later years going to come in and ask him to fix a problem. He said our son is not even going to know anything is wrong unless we point it out to him and create a problem. He said to QUIT WORRYING. He spent 25 minutes with us trying to ease my worries. Through my research I have found he is one of the best and most respected neurosurgeons in Colorado. I know this is counter information to this group but these are hard decisions and it is very hard to get the emotion out of them. My husband said " aren't you glad we don't have to put our baby in the vice? " . My son is 5 months old. Dad is not worried but I still am having trouble letting this go. At 04:47 AM 3/30/00 +0000, you wrote: >From: bthornton@... > >We saw a pediatrician in Vancouver. He said that is mild. He >is symmetrical in the lining up of his facial features and his ears >when you look at him face on. He said he has seen worse cases. HE >only knows of two children that have been " banded " and compared >banding to fixing children's feet with bars back a few years ago. >Back then it was common to see children with bars to correct their >feet but now we rarely see it because they found out that they were >intervening on something that would correct naturally. I also read a >study on natural correction versus orthotics and the results were >very comparable. I feel like I'm between a rock and a hard place. I >don't want to have to be in a head band but I want his skull to >be corrected and am concerned about other related problems. The ped >tells me it won't affect hearing and vision or speech. I am seeing >another ped on Wed. and I am almost certain he will say the same >thing. did have x-rays and we should have the results end of >this week. Does anyone know of any children that had plagio and did >not get a band but their heads became more symmetrical with age? I >would be interested in any input. > >Thanks, >'s Mom > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/3/_/689409/_/954391670/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Karla, I'm so glad Jenna's doing so well. We positioned Hanna AGGRESSIVELY for 2 months and saw NO change. Then again, she was put into the severe category. Kendra karladianne67@... wrote: << I also read a study on natural correction versus orthotics and the results were very comparable. >> Where did you read this? We are trying natural correction and I can tell it is working. Jenna's is a VERY mild case. Her ears are fine and her forehead does not protruded. I think we caught it just in time. Her head is really evening out. It is slightly higher on the right side, but even that is starting to even out. Trust me when I say we have been aggressive! I do not let her put pressure on the flat side, EVER! I have been doing this for 1 month. She now sleeps on the opposite side, and she spends a lot of time in her walker (her feet don't touch the ground yet, but she likes to sit in it and play with the toys). I personally believe repositioning can and will work for children with VERY mild plagio. Now, if it is more severe, I don't know, I know I would want the band if her ears were off or her forehead protruded. Karla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 ----- Original Message ----- From: <karladianne67@...> <Plagiocephalyonelist> Sent: Thursday, March 30, 2000 8:10 AM Subject: Re: saw the pediatrician > << I also read a > study on natural correction versus orthotics and the results were > very comparable. >> > Where did you read this? We are trying natural correction and I can tell it > is working. Jenna's is a VERY mild case. Her ears are fine and her forehead > does not protruded. I think we caught it just in time. Her head is really > evening out. It is slightly higher on the right side, but even that is > starting to even out. Trust me when I say we have been aggressive! I do not > let her put pressure on the flat side, EVER! I have been doing this for 1 > month. She now sleeps on the opposite side, and she spends a lot of time in > her walker (her feet don't touch the ground yet, but she likes to sit in it > and play with the toys). I personally believe repositioning can and will > work for children with VERY mild plagio. Now, if it is more severe, I don't > know, I know I would want the band if her ears were off or her forehead > protruded. > Karla > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Learn more at: > 1/937/3/_/689409/_/954432619/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 My son's case is mild, too, but once the sutures are closed it is too late to do anything about it. I refuse to take this chance. My husband is not the perfectionist that I am. He would probably choose to let it go, too. I want my little boy to have what he was born with. I don't want to put him in a " vice " either, but I don't know of any other way to fix it. I did months and months of positioning. He is nine months now. He is going to Cranial Tech next week. I found them on the Internet -- they did not find me. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 It is hard to let go of the emotions involved. It seems when we get information that is contrary to what we have heard or think we know, we start second guessing ourselves (I know I did). Bottom line is parents have to feel where they stand, and if they still don't feel quite right with the diagnosis, to at least get a second opinion to see if the same, or a similar diagnosis is said. And that goes for all sorts of conditions. Personally, I don't feel that Cranial Technologies would fit a child for a band that didn't need it. It certainly would skew any research they were doing, as well as make it difficult to continue to produce the product if complaints were made that they banded children unnecessarily. And having read about Drs/neurosurgeons who have performed operations unnecessarily (because they assumed closed sutures, rather than did CT scans to check before the surgery), that kind of concerns me a bit more. Our own neurosurgeon in Ohio actually heard of the DOC band, and a few patients of his had worn it -- but he had no knowledge that Cranial Technologies works with other headshapes besides assymetrical plagiocephaly, (my son has a scaphocephalic shape) and I'm still not sure the Dr. really believed me, even though I told him more than once that they had three different bands. We quibbled over what to call the " shape " of the head -- because Quinn has a " ledge " (his head juts out past his neck in the back)he called it dolicocephalic, and that's what he made the script out for. That got me worried that maybe I had been wrong all along. I went through my messages where I describe the shape, and someone else told me what it was called, I looked back to some of the pictures of scaphocephalic skulls I downloaded off the net that were similar, and did all this " rechecking " of myself. I had sent pictures to Cranial Tech last week to make sure that this was an option, and it was a day after our appointment that I was told that the Band was definitely an option for us. It wasn't until then that I stopped second guessing myself, even though I already had the prescription. We're to take Quinn in to the Neurosurgeon around 7 weeks after he's been wearing the band. Only then will the Dr. know that there are more options out there besides surgery. We have to be proactive. It's hard not to have a little emotion tied to this -- but the more knowledge parents have when they go to the doctors (about any condition), the more questions that they can ask, and the more likely Drs. will at least try to talk through concerns with parents. (aka Kali) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Good on yer!! I hope it works out well for you. I'm all for proactive measures now, after sitting on our behinds for too long , believing what the 'professionals' told us about it correcting itself in time. We too are nervous about the thought of our sons head being in a restrictive device (I can't bring myself to call it a 'vice'), but it sure is better than having the shape get worse and worse. He will be fitted with it on 24th Apr and we only wish it could be tomorrow, despite all the trials and tribulations we feel sure will come with the headband! Good luck, we wish you all the very best. , and (of Dallas) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 about the spouse thing...it took my hubby a while to " catch up " . Major denial! Consider another dr, perhaps you will get a different opinion. Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 <A HREF= " http://www.cranialtech.com/clinic/co.html " >Clinic Locations - Cranial Technologies</A> consider this specialist...I'd like to think that if you don't need the band, a seasoned specialist that makes Cranial Technologies site list would not recommended/rx it. Perhaps hearing it from someone with first hand patient experience would make you feel better, even if they said you don't need a band/helmet. Just a thought...Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 I am flying to Phoenix from Northern California. I just don't want to take a chance with my son's head. We only get one chance at this one and he is already nine months old. I suggest you call Cranial Tech. If you want to pursue it further, you could probably ask them to refer you to a neurologist. Just a suggestion. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 , My son is 6mos old been in helmet and PT since Jan. We were also told not to worry. We were given the choice of treating or not. Dr said it was purely cosmetic. The more we paid closer attention to his features did we notice he did need some correction, such as his ears. Being that he also has torticollis we did not think this would self-correct. Belinda (indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 No, , you're not!!! My husband was very concerned about all of this at first. Since starting treatment, everything has been my responsibility!!!! Those moms who have help from dad are very fortunate. I on the other hand am not. Belinda(Indiana) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Thanks - It's just that when I was little I used to put those plastic bands on my head and they always gave me a headache. Never could wear them. I'm afraid baby will have a headache and I won't know it. He is a tough little guy though. He bumps his head on toys and toy buckets and never cries. So maybe I just have a very encompassing imagination. Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 I know, I was wondering where you were:)!! Kimry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 I too am going to watch my son over the next several months. I am not necessarily supporting the Neurosurgeans position but I think it is good to get all opinions out in the open. For us getting the band will mean flying to Phoenix from Denver every 2 weeks for months. The doctor said he is not so against the bands that he will not write an Rx. He did say that he will not say it is medically necessary. I still am very sick inside about the whole thing. It is hard when everyone (Ped, Neuro and spouse) are against you. At 06:27 PM 3/30/00 -0500, you wrote: >My son's case is mild, too, but once the sutures are closed it is too late to >do anything about it. I refuse to take this chance. > >My husband is not the perfectionist that I am. He would probably choose to >let it go, too. > >I want my little boy to have what he was born with. > >I don't want to put him in a " vice " either, but I don't know of any other way >to fix it. I did months and months of positioning. He is nine months now. >He is going to Cranial Tech next week. I found them on the Internet -- they >did not find me. > >Judy > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/3/_/689409/_/954458885/ >------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Well said, ! C./subscribe/Plagiocephaly ----- Original Message ----- From: Horstmann Plagiocephalyonelist Sent: Thursday, March 30, 2000 1:39 PM Subject: Re: saw the pediatrician It is hard to let go of the emotions involved. It seems when we get information that is contrary to what we have heard or think we know, we start second guessing ourselves (I know I did). Bottom line is parents have to feel where they stand, and if they still don't feel quite right with the diagnosis, to at least get a second opinion to see if the same, or a similar diagnosis is said. And that goes for all sorts of conditions.Personally, I don't feel that Cranial Technologies would fit a child for a band that didn't need it. It certainly would skew any research they were doing, as well as make it difficult to continue to produce the product if complaints were made that they banded children unnecessarily. And having read about Drs/neurosurgeons who have performed operations unnecessarily (because they assumed closed sutures, rather than did CT scans to check before the surgery), that kind of concerns me a bit more. Our own neurosurgeon in Ohio actually heard of the DOC band, and a few patients of his had worn it -- but he had no knowledge that Cranial Technologies works with other headshapes besides assymetrical plagiocephaly, (my son has a scaphocephalic shape) and I'm still not sure the Dr. really believed me, even though I told him more than once that they had three different bands. We quibbled over what to call the "shape" of the head -- because Quinn has a "ledge" (his head juts out past his neck in the back)he called it dolicocephalic, and that's what he made the script out for. That got me worried that maybe I had been wrong all along. I went through my messages where I describe the shape, and someone else told me what it was called, I looked back to some of the pictures of scaphocephalic skulls I downloaded off the net that were similar, and did all this "rechecking" of myself. I had sent pictures to Cranial Tech last week to make sure that this was an option, and it was a day after our appointment that I was told that the Band was definitely an option for us. It wasn't until then that I stopped second guessing myself, even though I already had the prescription.We're to take Quinn in to the Neurosurgeon around 7 weeks after he's been wearing the band. Only then will the Dr. know that there are more options out there besides surgery. We have to be proactive. It's hard not to have a little emotion tied to this -- but the more knowledge parents have when they go to the doctors (about any condition), the more questions that they can ask, and the more likely Drs. will at least try to talk through concerns with parents.(aka Kali) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hey - Is there any way you could get an opinion/evaluation from someone local who provides helmet therapy on kids? A local OT at the hospital or something? Since they work more closely with these kind of cases, I think you might be more comfortable with their opinion. Just because you received the opinion of someone who only works with helmets doesn't mean you would be obligated to use one. Or, you may feel so comfortable with that person you decide to go that direction. Don't tear yourself up wondering if you're doing the right thing by waiting. There is nothing in the world wrong with asking questions and opinions. Don't feel you are looking for something to be wrong with your boy. You're just making sure. And that's commendable! C. -- In Plagiocephalyonelist, Paquin <lpaquin@q...> wrote: > I too am going to watch my son over the next several months. I am not > necessarily supporting the Neurosurgeans position but I think it is good to > get all opinions out in the open. For us getting the band will mean > flying to Phoenix from Denver every 2 weeks for months. The doctor said he > is not so against the bands that he will not write an Rx. He did say that > he will not say it is medically necessary. > > I still am very sick inside about the whole thing. It is hard when > everyone (Ped, Neuro and spouse) are against you. > > > > At 06:27 PM 3/30/00 -0500, you wrote: > >My son's case is mild, too, but once the sutures are closed it is too late to > >do anything about it. I refuse to take this chance. > > > >My husband is not the perfectionist that I am. He would probably choose to > >let it go, too. > > > >I want my little boy to have what he was born with. > > > >I don't want to put him in a " vice " either, but I don't know of any other way > >to fix it. I did months and months of positioning. He is nine months now. > >He is going to Cranial Tech next week. I found them on the Internet -- they > >did not find me. > > > >Judy > > > >------------------------------------------------------------------- ----- > >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% > >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > >1/936/3/_/689409/_/954458885/ > >------------------------------------------------------------------- ----- > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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