Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 , Welcome to the group! I know we all feel your pain. Guilt is pretty common, but it is unwarranted. Instead of feeling guilty just think of what a great mommy you are for being so proactive. Caitlyn is at a great age for treatment if it's necessary. My son had a lot of facial and ear asymmetry. He wore a DOC Band from 5-8 months and his head looks awesome. He is 4 today with no signs of plagio! Our baby is currently in a band. As much as I learned with our son she still ended up getting flat. I guess my kids heads are pretty pliable! Must have gotten that from DH I would have banded her at a younger age, but she didn't start getting flat until this summer. Good luck at the appointment. Look into your heart and you will know what's best. Mom to Dane 4yo (DOC Grad) and Cece 10 mo (DOC 9/05) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Hi . Welcome to the group. We noticed our babies plagio and tort when she was about 4 mos also. We did lots of Physical therapy and cranial sacral therapy (you can check this out in the files and on www.upledger.com). The PT and CST worked wonders for the tort, assymetry and keeping her out of the band. We repostioned Brielle from 4mos on, she was considered mild/moderate and were able to keep her out of the band. She will be 10 mos on Nov. 6th and looks great. You can check her out under Brielle B she also is in the Halloween section. We were all set to band her, but we set a deadline about 7mos and after keeping her off the flat spot and doing the stretches for the tort, we saw great improvement and decided against the band. You can find lots of repostioning ideas under the files and there are great repositioning moderators here. You are in great hands at cranial tech, they will give you lots of information. Good luck Debbie and Brielle (9mos repo, NJ) > > Hello and Welcome! Glad you found this site, it's going to be very helpful! I know what you're going through, feeling like somehow this is your fault, but IT'S NOT!! Don't feel that way, how could you have prevented something you didn't know anything about?! I felt that exact same way, but soon realized that I had never heard of this before, and no one mentions it at the hospital or any of the classes that I took before I had Waydon. > Is Caitlyn getting PT for her tort? How is that going? I'm glad to hear that you have an appt already for an eval at CT. At her age she'll hit a big growth spurt in her band (if she needs one) and she more than likely won't be in it very long! > Good luck and let us know how it goes! > > Lacy > Waydon 1 year > DOC Grad > http://waydonsnoodle.com > > > --- In Plagiocephaly , " " <aslanscubs@y...> wrote: > > > > Hi, my name is and my 4-month-old daughter Caitlyn has just been > > diagnosed with plagiocephaly and torticollis. We are scheduled to go > > to Cranial Tech on Monday, Nov. 7th. I'm really scared and just > > learning about this problem. Her head is flattened somewhat on the > > right side. I'm not sure yet how severe. I'll have to take some > > pictures and post them here. > > > > Right now, I feel like I'm going to need a lot of support and someone > > to talk to that has " been there. " I am feeling guilty, like this is > > my fault. Somehow I didn't do something that I should've done. I > > feel really bad that Caitlyn most likely will need to wear a DOC > > band. > > > > Anyway, I'm excited to get to know even more about plagiocephaly and > > getting to know everyone! > > > > > > (Caitlyn--34.4 weeks gestation; now 4 months old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Hi . Welcome to the group. We noticed our babies plagio and tort when she was about 4 mos also. We did lots of Physical therapy and cranial sacral therapy (you can check this out in the files and on www.upledger.com). The PT and CST worked wonders for the tort, assymetry and keeping her out of the band. We repostioned Brielle from 4mos on, she was considered mild/moderate and were able to keep her out of the band. She will be 10 mos on Nov. 6th and looks great. You can check her out under Brielle B she also is in the Halloween section. We were all set to band her, but we set a deadline about 7mos and after keeping her off the flat spot and doing the stretches for the tort, we saw great improvement and decided against the band. You can find lots of repostioning ideas under the files and there are great repositioning moderators here. You are in great hands at cranial tech, they will give you lots of information. Good luck Debbie and Brielle (9mos repo, NJ) > > Hello and Welcome! Glad you found this site, it's going to be very helpful! I know what you're going through, feeling like somehow this is your fault, but IT'S NOT!! Don't feel that way, how could you have prevented something you didn't know anything about?! I felt that exact same way, but soon realized that I had never heard of this before, and no one mentions it at the hospital or any of the classes that I took before I had Waydon. > Is Caitlyn getting PT for her tort? How is that going? I'm glad to hear that you have an appt already for an eval at CT. At her age she'll hit a big growth spurt in her band (if she needs one) and she more than likely won't be in it very long! > Good luck and let us know how it goes! > > Lacy > Waydon 1 year > DOC Grad > http://waydonsnoodle.com > > > --- In Plagiocephaly , " " <aslanscubs@y...> wrote: > > > > Hi, my name is and my 4-month-old daughter Caitlyn has just been > > diagnosed with plagiocephaly and torticollis. We are scheduled to go > > to Cranial Tech on Monday, Nov. 7th. I'm really scared and just > > learning about this problem. Her head is flattened somewhat on the > > right side. I'm not sure yet how severe. I'll have to take some > > pictures and post them here. > > > > Right now, I feel like I'm going to need a lot of support and someone > > to talk to that has " been there. " I am feeling guilty, like this is > > my fault. Somehow I didn't do something that I should've done. I > > feel really bad that Caitlyn most likely will need to wear a DOC > > band. > > > > Anyway, I'm excited to get to know even more about plagiocephaly and > > getting to know everyone! > > > > > > (Caitlyn--34.4 weeks gestation; now 4 months old) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Thanks for the response, . Like I said, we go for an evaluation in Charlotte, NC next Monday the 7th. I'm already resigning myself to the fact she'll have to have a band but maybe not. We'll see. > > , > > I believe I can safely say that we've all been where you are. I am fairly > new to this and still am dealing with some of the same emotions as you > described. My daughter is in the moderate to severe category and a DOC band > was recommended. We have gone through two evaluations, to check > measurements, and are going to get one more. We think, based on the last > two, that we will need a band. I finally feel okay about it. I sobbed at our > first appointment and then felt downright rebellious about it. Fortunately > that didn't last long. This groups has helped me. It is nice to know it is > not as rare as it feels (I had never heard of, seen or been warned about > plagiocephaly). I have already read quite a few stories that paralleled my > own and people graciously answered my nervous mom questions... i.e., did > anyone regret it? What problems can I expect? Etc. All this to say, you are > in the right group. Welcome. And begin to tell yourself each time you feel > guilty the slow mantra that it is not your fault... You are a fabulous, > supportive parent (I know this because you are taking pains to fix her > little head and to ask for help). > > Take care, > , mom of Ashlyn, 6 mo., pondering DOC band > > Introduction > > Hi, my name is and my 4-month-old daughter Caitlyn has just been > diagnosed with plagiocephaly and torticollis. We are scheduled to go to > Cranial Tech on Monday, Nov. 7th. I'm really scared and just learning about > this problem. Her head is flattened somewhat on the right side. I'm not > sure yet how severe. I'll have to take some pictures and post them here. > > Right now, I feel like I'm going to need a lot of support and someone to > talk to that has " been there. " I am feeling guilty, like this is my fault. > Somehow I didn't do something that I should've done. I feel really bad that > Caitlyn most likely will need to wear a DOC band. > > Anyway, I'm excited to get to know even more about plagiocephaly and getting > to know everyone! > > > (Caitlyn--34.4 weeks gestation; now 4 months old) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Thanks for the response, . Like I said, we go for an evaluation in Charlotte, NC next Monday the 7th. I'm already resigning myself to the fact she'll have to have a band but maybe not. We'll see. > > , > > I believe I can safely say that we've all been where you are. I am fairly > new to this and still am dealing with some of the same emotions as you > described. My daughter is in the moderate to severe category and a DOC band > was recommended. We have gone through two evaluations, to check > measurements, and are going to get one more. We think, based on the last > two, that we will need a band. I finally feel okay about it. I sobbed at our > first appointment and then felt downright rebellious about it. Fortunately > that didn't last long. This groups has helped me. It is nice to know it is > not as rare as it feels (I had never heard of, seen or been warned about > plagiocephaly). I have already read quite a few stories that paralleled my > own and people graciously answered my nervous mom questions... i.e., did > anyone regret it? What problems can I expect? Etc. All this to say, you are > in the right group. Welcome. And begin to tell yourself each time you feel > guilty the slow mantra that it is not your fault... You are a fabulous, > supportive parent (I know this because you are taking pains to fix her > little head and to ask for help). > > Take care, > , mom of Ashlyn, 6 mo., pondering DOC band > > Introduction > > Hi, my name is and my 4-month-old daughter Caitlyn has just been > diagnosed with plagiocephaly and torticollis. We are scheduled to go to > Cranial Tech on Monday, Nov. 7th. I'm really scared and just learning about > this problem. Her head is flattened somewhat on the right side. I'm not > sure yet how severe. I'll have to take some pictures and post them here. > > Right now, I feel like I'm going to need a lot of support and someone to > talk to that has " been there. " I am feeling guilty, like this is my fault. > Somehow I didn't do something that I should've done. I feel really bad that > Caitlyn most likely will need to wear a DOC band. > > Anyway, I'm excited to get to know even more about plagiocephaly and getting > to know everyone! > > > (Caitlyn--34.4 weeks gestation; now 4 months old) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 , Good luck next week! We worked with at Cranial Tech in Charlotte, NC! <aslanscubs@...> wrote: Thanks for the response, . Like I said, we go for an evaluation in Charlotte, NC next Monday the 7th. I'm already resigning myself to the fact she'll have to have a band but maybe not. We'll see.>> , > > I believe I can safely say that we've all been where you are. I am fairly> new to this and still am dealing with some of the same emotions as you> described. My daughter is in the moderate to severe category and a DOC band> was recommended. We have gone through two evaluations, to check> measurements, and are going to get one more. We think, based on the last> two, that we will need a band. I finally feel okay about it. I sobbed at our> first appointment and then felt downright rebellious about it. Fortunately> that didn't last long. This groups has helped me. It is nice to know it is> not as rare as it feels (I had never heard of, seen or been warned about> plagiocephaly). I have already read quite a few stories that paralleled my> own and people graciously answered my nervous mom questions... i.e., did> anyone regret it? What problems can I expect? Etc. All this to say, you are> in the right group. Welcome. And begin to tell yourself each time you feel> guilty the slow mantra that it is not your fault... You are a fabulous,> supportive parent (I know this because you are taking pains to fix her> little head and to ask for help). > > Take care, > , mom of Ashlyn, 6 mo., pondering DOC band> > Introduction> > Hi, my name is and my 4-month-old daughter Caitlyn has just been> diagnosed with plagiocephaly and torticollis. We are scheduled to go to> Cranial Tech on Monday, Nov. 7th. I'm really scared and just learning about> this problem. Her head is flattened somewhat on the right side. I'm not> sure yet how severe. I'll have to take some pictures and post them here. > > Right now, I feel like I'm going to need a lot of support and someone to> talk to that has "been there." I am feeling guilty, like this is my fault.> Somehow I didn't do something that I should've done. I feel really bad that> Caitlyn most likely will need to wear a DOC band. > > Anyway, I'm excited to get to know even more about plagiocephaly and getting> to know everyone!> > > (Caitlyn--34.4 weeks gestation; now 4 months old)> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Thanks for the replies and information, everyone. I cannot wait to go to CT on Monday. I think I'll be on edge until then. I'm not sure now what I'll do if her plagio is moderate. I guess we'll see what the docs say and go from there. Also, I'm already anticipating my insurance turning down paying for the band. Has anyone had this happen with BCBS? I live in SC, if that matters. I'm already preparing to appeal if need be. (Mom to Caitlyn) > > , > Welcome to the group! > I know we all feel your pain. Guilt is pretty common, but it is > unwarranted. Instead of feeling guilty just think of what a great > mommy you are for being so proactive. Caitlyn is at a great age for > treatment if it's necessary. > My son had a lot of facial and ear asymmetry. He wore a DOC Band from > 5-8 months and his head looks awesome. He is 4 today with no signs of > plagio! > Our baby is currently in a band. As much as I learned with our son > she still ended up getting flat. I guess my kids heads are pretty > pliable! Must have gotten that from DH I would have banded her > at a younger age, but she didn't start getting flat until this summer. > Good luck at the appointment. Look into your heart and you will know > what's best. > > Mom to Dane 4yo (DOC Grad) and Cece 10 mo (DOC 9/05) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 , Good luck next week! We worked with at Cranial Tech in Charlotte, NC! <aslanscubs@...> wrote: Thanks for the response, . Like I said, we go for an evaluation in Charlotte, NC next Monday the 7th. I'm already resigning myself to the fact she'll have to have a band but maybe not. We'll see.>> , > > I believe I can safely say that we've all been where you are. I am fairly> new to this and still am dealing with some of the same emotions as you> described. My daughter is in the moderate to severe category and a DOC band> was recommended. We have gone through two evaluations, to check> measurements, and are going to get one more. We think, based on the last> two, that we will need a band. I finally feel okay about it. I sobbed at our> first appointment and then felt downright rebellious about it. Fortunately> that didn't last long. This groups has helped me. It is nice to know it is> not as rare as it feels (I had never heard of, seen or been warned about> plagiocephaly). I have already read quite a few stories that paralleled my> own and people graciously answered my nervous mom questions... i.e., did> anyone regret it? What problems can I expect? Etc. All this to say, you are> in the right group. Welcome. And begin to tell yourself each time you feel> guilty the slow mantra that it is not your fault... You are a fabulous,> supportive parent (I know this because you are taking pains to fix her> little head and to ask for help). > > Take care, > , mom of Ashlyn, 6 mo., pondering DOC band> > Introduction> > Hi, my name is and my 4-month-old daughter Caitlyn has just been> diagnosed with plagiocephaly and torticollis. We are scheduled to go to> Cranial Tech on Monday, Nov. 7th. I'm really scared and just learning about> this problem. Her head is flattened somewhat on the right side. I'm not> sure yet how severe. I'll have to take some pictures and post them here. > > Right now, I feel like I'm going to need a lot of support and someone to> talk to that has "been there." I am feeling guilty, like this is my fault.> Somehow I didn't do something that I should've done. I feel really bad that> Caitlyn most likely will need to wear a DOC band. > > Anyway, I'm excited to get to know even more about plagiocephaly and getting> to know everyone!> > > (Caitlyn--34.4 weeks gestation; now 4 months old)> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 Thanks for the replies and information, everyone. I cannot wait to go to CT on Monday. I think I'll be on edge until then. I'm not sure now what I'll do if her plagio is moderate. I guess we'll see what the docs say and go from there. Also, I'm already anticipating my insurance turning down paying for the band. Has anyone had this happen with BCBS? I live in SC, if that matters. I'm already preparing to appeal if need be. (Mom to Caitlyn) > > , > Welcome to the group! > I know we all feel your pain. Guilt is pretty common, but it is > unwarranted. Instead of feeling guilty just think of what a great > mommy you are for being so proactive. Caitlyn is at a great age for > treatment if it's necessary. > My son had a lot of facial and ear asymmetry. He wore a DOC Band from > 5-8 months and his head looks awesome. He is 4 today with no signs of > plagio! > Our baby is currently in a band. As much as I learned with our son > she still ended up getting flat. I guess my kids heads are pretty > pliable! Must have gotten that from DH I would have banded her > at a younger age, but she didn't start getting flat until this summer. > Good luck at the appointment. Look into your heart and you will know > what's best. > > Mom to Dane 4yo (DOC Grad) and Cece 10 mo (DOC 9/05) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2005 Report Share Posted November 1, 2005 , Even with an expressive language age equivalency of 15 months, that equates to a 35-37% delay (depending on whether they go with 23 or 24 months of age). To qualify for EI services (at least in Illinois), you need to show at least a 30% delay in an area, and that has to be confirmed by another specialist - usually a developmental therapist, here. So, by those standards, it sounds like should qualify. Regarding aug comm, what are his fine motor skills like? Have you tried any signing or even PECS (Picture Exchange Communication System)? If he needs a device, it would be nice to get into the EI system first, because there may be some funding assistance there for you. Also, you may have a state system that loans devices for a few weeks so you can try them out. Many companies also do this. They have a representative for your area, who will come and help you decide what device (of theirs) would be the best fit for your son. They may then loan the device for a time, so you can really try it out. You should get a device which you feel he will be able to learn how to operate, and have the fine motor skills to operate (unless you go to some sort of visual-select system). Let us know how things work out. Jill [ ] Introduction Hi All, I am so glad I found this group. My son was born at 32 weeks when my uterus ruptured. He has been diagnosed with moderate CP. I have been a student of all things related to PT and OT, as he has been receiving those therapies for over a year. HOWEVER.... : ) I am still somewhat clueless when it comes to speech and language. will be two on Thursday and at this point only says /d/, /p/ and /b/, and some sort of short " a " sound to hold those letters together. We were evaluated last week by an SLT who did not find him eligible for early intervention. She said his receptive language was 23 mos. and his expressive was 15 mos. I disagreed with the expressive part and she has agreed to reevaluate. Any suggestions for what to look for in good speech therapy?? Also, our hospital speech therapist thinks he would benefit from an augmentative communication device. Is it better to get a simple one to start with, or a more expensive one he can grow into??? Finally, is it possible to tell if a child's issues are tied to processing or articulation? I will also look through your archives to see if I can find the answers to these questions! Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 My advice is simple -- fish oil. Fish oil can help and can't hurt. Your son is young, start him on it NOW. My experience teaches me the longer you wait to give fish oil, the less effective it is. Here is an article about fish oil. http://www.cherab.org/information/dietaryeffects/Englemed.html Here's a pointer to a place you can buy good fish oil: http://www.nordicnaturals.com/direct/Retailproducts.asp I suggest you buy " Omega 3-6-9 Junior " and start with one cap/day in the morning. The oil seems to work best in the smallest dosage. You will see a " surge " . After several months(maybe 6 months?), you will see no new progress. Then give him 2 caps/day. You will see a new surge and so on. Whatever else you decide to do,put him on the fish oil now. Just my advice. Best of luck to you. marylfox <mary@...> wrote: Hi All, I am so glad I found this group. My son was born at 32 weeks when my uterus ruptured. He has been diagnosed with moderate CP. I have been a student of all things related to PT and OT, as he has been receiving those therapies for over a year. HOWEVER.... : ) I am still somewhat clueless when it comes to speech and language. will be two on Thursday and at this point only says /d/, /p/ and /b/, and some sort of short " a " sound to hold those letters together. We were evaluated last week by an SLT who did not find him eligible for early intervention. She said his receptive language was 23 mos. and his expressive was 15 mos. I disagreed with the expressive part and she has agreed to reevaluate. Any suggestions for what to look for in good speech therapy?? Also, our hospital speech therapist thinks he would benefit from an augmentative communication device. Is it better to get a simple one to start with, or a more expensive one he can grow into??? Finally, is it possible to tell if a child's issues are tied to processing or articulation? I will also look through your archives to see if I can find the answers to these questions! Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2005 Report Share Posted November 2, 2005 Hi : welcome to the group. I don't know if this will help you any, but I thought I would tell you about my experience with getting my son EI. I have a 2 year old that has been in EI since he was 19 months. When EI evaluated him he could only say mama, dada, and his brother's name. The developmental evaluator scored him at 10-13 months for communication and the Speech Pathologist scored him at 14 months for total language score. Here in GA he needed a 30% delay. He wasn't eligible based on the Speech evaluator so they used the Developmental evaluators scores. Good luck Tina > > Hi All, > > Any suggestions for what to look for in good speech therapy?? Also, > our hospital speech therapist thinks he would benefit from an > augmentative communication device. Is it better to get a simple one to > start with, or a more expensive one he can grow into??? Finally, is > it possible to tell if a child's issues are tied to processing or > articulation? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2005 Report Share Posted November 4, 2005 mary- if cost is not an issue wouldnt it be better to get the best device now instead of upgrading later unless your afraid it would be too uverwhelming? SOMETIMES ITS EASIER TO START WITH SOMETHING SIMPLER. I bet if you saw both devices you would know what to choose. just a thought. charlotte henry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2005 Report Share Posted November 10, 2005 Here is some info to get you started. Welcome to our group! Pam _AspergersSyndrome_ (http://maxweber.hunter.cuny.edu/pub/eres/EDSPC715_MCINTYRE/AspergersSyndrome.ht\ ml) _Autism and Aspergers Support Group Chat Information_ (http://www.support4hope.com/autism/aspergers_characteristics.htm) _ASPEN® | What is Asperger Syndrome?_ (http://www.aspennj.org/WhatIsAS.html) _Cloud 9 Children's Foundation_ (http://www.withyoueverystepoftheway.com/index.asp?nav=asinfo & main=asinfo/summar\ y) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 10, 2005 Report Share Posted November 10, 2005 Welcome LeAnn The best place to start is probably Tony attwoods web site. http://www.tonyattwood.com.au there's lots of info there and also the books he has written,many of which you will find at your local library. The 2 biggest things with my son is being able to interact in a neotypical manner with peers. At home he seems to be fine, but not with kids his age. And the second would be sensory over load,where there's to much happening around him. Sharon LeAnn Lang <leannlang@...> wrote: My name is LeAnn. My son Dominic is 2 and he was diagnosed with AS today. I don't know anything about this disorder. Any info. would be appreciated. Thanks. LeAnn Dom's Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Hi Lorrie, I'm sorry you were put off by an uninformed ped. How infuriating! Your story is all to common though, and I hope the word continues to spread. It seems to be better known than when my daughter was a baby, but it's still far from the widespread knowledge it should be. Thanks for sharing Sierra's story. , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com --- In Plagiocephaly , " lwarfield80 " <lwarfield@h...> wrote: > > Hi my name is Lorrie and my 3 1/2 year old Sierra had Plagiocephaly. > He head actually got to the point that behind her left ear her head > was flat and pushed to the right. I continuiously consulted my > pediatrician and was told that her head would return to its normal > shape without any interfience, never once was a helmet suggested. Her > head did straighten up pretty well she still has an ear off and you > can still see it in her face a bit. I have to make her ponytails > lopsided to cover it. I wish that my dr and I both had been better > informed maybe her head could have been straightened more before she > got too old. Its such a shame that this topic is now only getting the > attention that it deserves after so many parents have had to fight drs > and insurance companys for a medical problem that is so evident. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2005 Report Share Posted November 11, 2005 Hi Lorrie, I'm sorry you were put off by an uninformed ped. How infuriating! Your story is all to common though, and I hope the word continues to spread. It seems to be better known than when my daughter was a baby, but it's still far from the widespread knowledge it should be. Thanks for sharing Sierra's story. , mom to Hannah, DOCgrad Cape Cod, Ma http://hannahsnoggin.typepad.com --- In Plagiocephaly , " lwarfield80 " <lwarfield@h...> wrote: > > Hi my name is Lorrie and my 3 1/2 year old Sierra had Plagiocephaly. > He head actually got to the point that behind her left ear her head > was flat and pushed to the right. I continuiously consulted my > pediatrician and was told that her head would return to its normal > shape without any interfience, never once was a helmet suggested. Her > head did straighten up pretty well she still has an ear off and you > can still see it in her face a bit. I have to make her ponytails > lopsided to cover it. I wish that my dr and I both had been better > informed maybe her head could have been straightened more before she > got too old. Its such a shame that this topic is now only getting the > attention that it deserves after so many parents have had to fight drs > and insurance companys for a medical problem that is so evident. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2005 Report Share Posted November 24, 2005 Hiya You might also be interested in WAPF practitioners then: WAPFpractitioners/ Deb in NZ (only sporadically visting these days, and it's the luck of the draw which convos I click on, but having an awake-at-4am night, and it's not even full moon, so may as well read some posts....) On 11/21/05, askdocscott <askdocscott@...> wrote: > Hello all! I am the Miami WAp chapter head, and have just been told > that you all exist, by my associate (the former New Orleans chapter > head) who just came back form the Virginia event. Personal crises > prevented me form attending. Bt profession, I am an a 'full system' > wholistic, complementary physician, specializing in chiropractic and > (sub specializing)in applied kinesiology. I emphasize food > tremendoulsly, and have known about WAP, along w/Royal Lee, for a > couple of decades now. I very much look forward to interacting w/all > high level thinkers here! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Sounds like my son. Diagnosed at 2 months with torticollis and then plagiocephy. Now at 6 months is graduated from physical therapy for the torticollis but looking to get a band. He has an appointment next Friday to meet with the people for it. I am glad you had a good doctor for . That is what helps alot. Sammy's first Website: http://www.babiesonline.com/babies/s/sam/ Password:6789 -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Sent: Friday, December 23, 2005 8:28 AMPlagiocephaly Subject: IntroductionHi. My name is and my husband, , and I are foster parents to the most adorable 3 month old who we call "Bug". He was brought into foster care because was born cocaine positive. Other than being a preemie (born at 35 weeks) Bug has shown no affects from the drug exposure. We brought him home from the hospital at 1 week old and are very hopeful that we will be able to adopt him. I first noticed at his preference to turning his head to the right when he was about 3 weeks old. I was looking through lots of pictures and noticed that in just about all of them his head was turned the same way. We discussed our concern with our pediatrician at Bug's 1 month check up. He showed us some stretches to do because he thought Bug had some neck tightening on the right side. He also some repositioning techniques so we could keep him off the small flat spot he had developed. At his 2 month check up we got the referral for physical therapy for torticolis and plagiocephaly. Bug has been going to therapy 2x a week since right before Thanksgiving. His torticollis is SO much better, but he still has plagiocephaly. His head has really rounded out a lot, but not as much as the PT would like. Yesterday we got a referral to a pediatric plastic surgeon and I'm sure we will most likely be getting Bug fitted for a helmet. I found this group and was so excited to see such a wealth of information. I'm a planner (urban planner) by profession and by nature so I feel so much better know that there are so many other parents going through this. I'm frustrated already because the next available appointment isn't until the end of January!!! But hopefully this group will help me become educated by then and I will know what questions to ask and how to evaluate our options.Looking forward to reading everyone's advice and giving some in return as I learn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Sounds like my son. Diagnosed at 2 months with torticollis and then plagiocephy. Now at 6 months is graduated from physical therapy for the torticollis but looking to get a band. He has an appointment next Friday to meet with the people for it. I am glad you had a good doctor for . That is what helps alot. Sammy's first Website: http://www.babiesonline.com/babies/s/sam/ Password:6789 -----Original Message-----From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Sent: Friday, December 23, 2005 8:28 AMPlagiocephaly Subject: IntroductionHi. My name is and my husband, , and I are foster parents to the most adorable 3 month old who we call "Bug". He was brought into foster care because was born cocaine positive. Other than being a preemie (born at 35 weeks) Bug has shown no affects from the drug exposure. We brought him home from the hospital at 1 week old and are very hopeful that we will be able to adopt him. I first noticed at his preference to turning his head to the right when he was about 3 weeks old. I was looking through lots of pictures and noticed that in just about all of them his head was turned the same way. We discussed our concern with our pediatrician at Bug's 1 month check up. He showed us some stretches to do because he thought Bug had some neck tightening on the right side. He also some repositioning techniques so we could keep him off the small flat spot he had developed. At his 2 month check up we got the referral for physical therapy for torticolis and plagiocephaly. Bug has been going to therapy 2x a week since right before Thanksgiving. His torticollis is SO much better, but he still has plagiocephaly. His head has really rounded out a lot, but not as much as the PT would like. Yesterday we got a referral to a pediatric plastic surgeon and I'm sure we will most likely be getting Bug fitted for a helmet. I found this group and was so excited to see such a wealth of information. I'm a planner (urban planner) by profession and by nature so I feel so much better know that there are so many other parents going through this. I'm frustrated already because the next available appointment isn't until the end of January!!! But hopefully this group will help me become educated by then and I will know what questions to ask and how to evaluate our options.Looking forward to reading everyone's advice and giving some in return as I learn. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Welcome to the group ! Congratulations on Bug! It's not uncommon to have to wait a month for an appointment to see a specialist. Luckily our pediatrician wrote our prescriptions so we didn't have to see anyone else. If you are close to a Cranial Technologies (cranialtech.com) you may want to contact them for a free evaluation prior to seeing the plastic surgeon. That way you could take the measurements and pictures with you. Bug is pretty young. You may be able to see some really great results with repositioning him prior to seeing the specialist. If he does need a band he will be at a phenomenal age for correction. My son wore his from 5-8 months and looks fabulous today at age 4. Good luck and let us know how the appointment goes! Mom to Dane 4 yo (DOC Grad) and Cece 11 mo (DOC Grad) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Welcome to the group ! Congratulations on Bug! It's not uncommon to have to wait a month for an appointment to see a specialist. Luckily our pediatrician wrote our prescriptions so we didn't have to see anyone else. If you are close to a Cranial Technologies (cranialtech.com) you may want to contact them for a free evaluation prior to seeing the plastic surgeon. That way you could take the measurements and pictures with you. Bug is pretty young. You may be able to see some really great results with repositioning him prior to seeing the specialist. If he does need a band he will be at a phenomenal age for correction. My son wore his from 5-8 months and looks fabulous today at age 4. Good luck and let us know how the appointment goes! Mom to Dane 4 yo (DOC Grad) and Cece 11 mo (DOC Grad) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Hi , Welcome to the group. Bug is just the cutest nickname. I have a June Bug - LOL. It sounds like you have been on top of things. Tort can undermine even the best repo efforts as I have found. Our 2nd daughter may have to be banded. this is after knowing everything to do and look for from birth. She has tort just like her sister did. Bug still sounds realtively young. A child has to be 3 months to be banded and most are closer to 5 or 6. na was 4 1/2 months. Also, because of his premmie status he has a softer head than most kids. The plagio world uses adjusted ages for banding. So he would actually have to be almost 4 1/2 months old (3 months adjusted). You have lots of time and aggressive repo combined with the PT for his tort could really help a lot in the next few weeks. We have a wealth of repo tips in the files section. mom to na, 2 1/2 DOC grad Feb 04 Kiersten, Repo & Tort www.thefilyaws.com/plagio/plagio.html --- In Plagiocephaly , " " <kelly7278@c...> wrote: > > Hi. My name is and my husband, , and I are foster > parents to the most adorable 3 month old who we call " Bug " . He was > brought into foster care because was born cocaine positive. Other > than being a preemie (born at 35 weeks) Bug has shown no affects > from the drug exposure. We brought him home from the hospital at 1 > week old and are very hopeful that we will be able to adopt him. > > I first noticed at his preference to turning his head to the right > when he was about 3 weeks old. I was looking through lots of > pictures and noticed that in just about all of them his head was > turned the same way. We discussed our concern with our pediatrician > at Bug's 1 month check up. He showed us some stretches to do because > he thought Bug had some neck tightening on the right side. He also > some repositioning techniques so we could keep him off the small > flat spot he had developed. At his 2 month check up we got the > referral for physical therapy for torticolis and plagiocephaly. Bug > has been going to therapy 2x a week since right before Thanksgiving. > His torticollis is SO much better, but he still has plagiocephaly. > His head has really rounded out a lot, but not as much as the PT > would like. Yesterday we got a referral to a pediatric plastic > surgeon and I'm sure we will most likely be getting Bug fitted for a > helmet. > > I found this group and was so excited to see such a wealth of > information. I'm a planner (urban planner) by profession and by > nature so I feel so much better know that there are so many other > parents going through this. I'm frustrated already because the next > available appointment isn't until the end of January!!! But > hopefully this group will help me become educated by then and I will > know what questions to ask and how to evaluate our options. > > Looking forward to reading everyone's advice and giving some in > return as I learn. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2005 Report Share Posted December 23, 2005 Hi , Welcome to the group. Bug is just the cutest nickname. I have a June Bug - LOL. It sounds like you have been on top of things. Tort can undermine even the best repo efforts as I have found. Our 2nd daughter may have to be banded. this is after knowing everything to do and look for from birth. She has tort just like her sister did. Bug still sounds realtively young. A child has to be 3 months to be banded and most are closer to 5 or 6. na was 4 1/2 months. Also, because of his premmie status he has a softer head than most kids. The plagio world uses adjusted ages for banding. So he would actually have to be almost 4 1/2 months old (3 months adjusted). You have lots of time and aggressive repo combined with the PT for his tort could really help a lot in the next few weeks. We have a wealth of repo tips in the files section. mom to na, 2 1/2 DOC grad Feb 04 Kiersten, Repo & Tort www.thefilyaws.com/plagio/plagio.html --- In Plagiocephaly , " " <kelly7278@c...> wrote: > > Hi. My name is and my husband, , and I are foster > parents to the most adorable 3 month old who we call " Bug " . He was > brought into foster care because was born cocaine positive. Other > than being a preemie (born at 35 weeks) Bug has shown no affects > from the drug exposure. We brought him home from the hospital at 1 > week old and are very hopeful that we will be able to adopt him. > > I first noticed at his preference to turning his head to the right > when he was about 3 weeks old. I was looking through lots of > pictures and noticed that in just about all of them his head was > turned the same way. We discussed our concern with our pediatrician > at Bug's 1 month check up. He showed us some stretches to do because > he thought Bug had some neck tightening on the right side. He also > some repositioning techniques so we could keep him off the small > flat spot he had developed. At his 2 month check up we got the > referral for physical therapy for torticolis and plagiocephaly. Bug > has been going to therapy 2x a week since right before Thanksgiving. > His torticollis is SO much better, but he still has plagiocephaly. > His head has really rounded out a lot, but not as much as the PT > would like. Yesterday we got a referral to a pediatric plastic > surgeon and I'm sure we will most likely be getting Bug fitted for a > helmet. > > I found this group and was so excited to see such a wealth of > information. I'm a planner (urban planner) by profession and by > nature so I feel so much better know that there are so many other > parents going through this. I'm frustrated already because the next > available appointment isn't until the end of January!!! But > hopefully this group will help me become educated by then and I will > know what questions to ask and how to evaluate our options. > > Looking forward to reading everyone's advice and giving some in > return as I learn. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2005 Report Share Posted December 27, 2005 , Sorry it took so long the holidays have been crazy. How wonderful that Bug has shown no ill effects so far from his inutero life. I give you and patrick all the credit in the world for taking on this responsibility and truly hope that you will be able to adopt him. Now the plagio.....don't get too worried about having to wait till Jan, Bug is still young enough to recieve excellent correction. Most babies when caught young are banded between 3-5 months. Do you know what band provider this plastic surgeon refers to? You can always post to see what options are available in your area. If you would like to get an idea of how the whole process goes from start to finish you can look at my son's website www.mybandedbaby.typepad.com It has his story of treatment with the Doc band and has pictures of everything including progress pictures. It also has a bit of info on some of the associated risks(TMJ,vision problems,etc..) that can go hand in hand with plagio and tort. Hope this helps and good luck with everything. CAROLG > > Hi. My name is and my husband, , and I are foster > parents to the most adorable 3 month old who we call " Bug " . He was > brought into foster care because was born cocaine positive. Other > than being a preemie (born at 35 weeks) Bug has shown no affects > from the drug exposure. We brought him home from the hospital at 1 > week old and are very hopeful that we will be able to adopt him. > > I first noticed at his preference to turning his head to the right > when he was about 3 weeks old. I was looking through lots of > pictures and noticed that in just about all of them his head was > turned the same way. We discussed our concern with our pediatrician > at Bug's 1 month check up. He showed us some stretches to do because > he thought Bug had some neck tightening on the right side. He also > some repositioning techniques so we could keep him off the small > flat spot he had developed. At his 2 month check up we got the > referral for physical therapy for torticolis and plagiocephaly. Bug > has been going to therapy 2x a week since right before Thanksgiving. > His torticollis is SO much better, but he still has plagiocephaly. > His head has really rounded out a lot, but not as much as the PT > would like. Yesterday we got a referral to a pediatric plastic > surgeon and I'm sure we will most likely be getting Bug fitted for a > helmet. > > I found this group and was so excited to see such a wealth of > information. I'm a planner (urban planner) by profession and by > nature so I feel so much better know that there are so many other > parents going through this. I'm frustrated already because the next > available appointment isn't until the end of January!!! But > hopefully this group will help me become educated by then and I will > know what questions to ask and how to evaluate our options. > > Looking forward to reading everyone's advice and giving some in > return as I learn. > > > Quote Link to comment Share on other sites More sharing options...
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