Guest guest Posted March 27, 2004 Report Share Posted March 27, 2004 Dear , Just a note to say that I always appreciate it when you weigh in...You make me think. It is so clear to me after years of communicating with thousands of parents that the puzzle is still missing pieces. I wish the answer was clearly the same for every child. I know metals are a huge issue for ...but I'm always wondering if there's something I'm missing because his history is complicated... You were one of the first people I remember from when was first diagnosed. Your son's story has been one that has made me very cautious about addressing metals...or any treatment. It's like " Let's Make a Deal. " If things are going well, do I really need to look behind the curtain for the car??? Ugh. Such choices. May God lead you...and all of us...to the answers we need... Blessings on the rest of your weekend! , mom to and [ ] Questions It is starting to look like I am hogging this list, you know where to reach me if you have a question. I always answer my e-mails even if all I can tell you is that I don't know. Best, Carlton ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2005 Report Share Posted July 18, 2005 You are very fortunate to be in NJ -both because you are surrounded by other families just like you -and thus, a huge amount of knowledgeable as well as ethical, awesome professionals. Here are just three neuroMDs I've heard great things about: Pediatric neurologists Dr. Abba Cargan out of Columbia in NY -and in practice in NJ. http://www.drcargan.yourmd.com/ http://www.cumc.columbia.edu/dept/ps/bulletin/bull0035.html and Dr. Ming http://www.umdnj.edu/njmsweb/neuroscience/faculty_bio/old%20bios/Xueming.htm And in the " NJ area " -Dr. Agin of course! She is a neurodevelopmental pediatrician, Medical Director of EI for NYC, my child's neuroMD and my co author of The Late Talker! Marilyn C. Agin, MD, FAAP Neurodevelopmental Pediatrician Medical Director, NYC Early Intervention (EI) Program 79 Laight St. #1A (private office) New York, NY 10013 212-274-9180 (private office phone) 212-219-3688 (fax) 93 Worth St. #915 (EI office) New York, NY 10013 212-219-5580 (ph) 212-219-5586 (fax) http://www.cherab.org/information/aginmdapraxia.html http://www.speech-express.com/late.talker.html http://www.contemporarypediatrics.com/contpeds/article/articleDetail.jsp?id=1327\ 20 ===== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 thanks for the feedback....another question. I have been taking my daughter to a chiropractor who is really pushing issue of mercury poisoning and wants us to take her to see a dr peter prociuk in west chester pa to have her " detoxed " I wondered what others experience of this type of alternative approach is? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 1. Has anyone seen Annette Cartaxo from Kinnelon? I know that someone posted a while ago about her but I misplaced the address and phone number and now cant find her listed anywhere? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2005 Report Share Posted July 21, 2005 , Be very careful with this 'detox' issue. It means many things to many different practitioners. Regardless of how effected your child is by mercury (from vaccines or what not), she DOES carry mercury in her tissues. We all do. It can be dangerous to mess around with chelating agents that mobilize mercury in an uncontrolled manner. These drugs (EDTA, DMSA, DMPS, ALA) have potential side effects, and remove other things like essential minerals in addition to toxic metals. I do not know this doctor. I am sure someone does. One thing to ask would be if this doc follows the DAN! (Defeat Autism Now) protocol. Even though there really isn't a DAN! protocol, per se, a doctor with DAN! training will have an idea about the safer chelation (detox) methods out there. Take a look at the Autism Research Institutes website. http://www.autismwebsite.com/ari-lists/danus.html I checked for Prociuk's name; it is on the list. That doesn't mean he is automatically a well trained MD, but it is a place to start. I would do some reading on mercury chelation and ask a lot of questions. If you wish to test your child for mercury toxicity, one non-invasive way to measure toxic burden is through a Doctors Data Hair Test (DDI). A simple blood test for mercury will only tell you if she has recent mercury exposure. I happen to be someone who believes many of our kids have been harmed by mercury. Whether or not chelation will solve the problem in every situation is another story. Knowledge is Power; always. Good luck with your decision. It is EXPENSIVE (our initial visit ran us $1000 for consult and lab testing)!!!! For us, it is worth every penny. Although my son has yet to take any chelation drugs, 2 years of supplements have led to awesome improvements. So far, ProEFA and an mB12/folinic acid/TMG/P-5P capsule have been our big *wow* supplements. There have been some losers, too. We are going to start DMSA this fall. Forgot to add: my son has Autism (mild). He is 4.3 years. His expressive/receptive language hovers at about the 24 month level. His latest speech eval pretty much ruled out Apraxia once and for all. Our biggest hurdle is language; pragmatic (social) language. Pam > thanks for the feedback....another question. > > I have been taking my daughter to a chiropractor who is really pushing issue > of mercury poisoning and wants us to take her to see a dr peter prociuk in > west chester pa to have her " detoxed " I wondered what others experience of this > type of alternative approach is? > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2005 Report Share Posted July 26, 2005 thanks for the feedback. Is anyone familiar with DR Anette Cartaxo in Kinnelon, NJ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2006 Report Share Posted March 25, 2006 Jen, I have read both books and they were a great help! I highly recommend them, there is a quiz to help you find your child's sensitivities and their needs, which was very helpful to me. They also have alot tricks to use to help your child and there is now the book Out of Sync Child Has Fun, with great activities. I live in Ok so can't help you w/the Dev. Pediatrician, but at our University hospital the waiting list is over 2 years so I was able to get the insurance to cover one out of network. Hope this helps and good luck, Tara > > Hi all, > > My son's Ped called me the other day and he told me a book to read. > I am wondering if any of you have read it here and what you think. > > The out of sync child. > > Also, the Sensory sensitive child > > I am going to get them this weekend, I have an appt with my ped in 2 > weeks and he wants me to look at them before then. > > Also, does anyone live in Philly or even PA and have a developmental > Ped they like? We need one and it is an 18 month wait at CHOP > (Children's Hosp of Phila). We are on the list. > > Also, do any of you (also in PA) have a non-private OT that you go > to? I have looked but so many do not take insurance. > > Thanks so much! > Jen Fischer, mom 2 my three little princes. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 hi- both books are great- charlotte henry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2006 Report Share Posted March 26, 2006 The out-of-sync child is a classic in the area of sensory integration dysfunction. They recommended it for too. Peace, Kathy E. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hi Susie, I have tried a number of times to take Estrogen and everytime I get a belly like I am 6 months pregnant. The first time was when I was 21 and just married on birth cotrol pills. At that time you could take an all estrogen pill. All my doctors say this cannot happen, but I am the one with the big belly and not them. I cannot stand this so I have delt with hot flashes as best I could. I use soy and stay away from hot triggers. Staying in airconditioning really helps. I am not saying you should get off the estrogen...I am only telling you its possible that the estrogen is giving you the big middle. cooky ap 1997 rheumatic questions Hi, Susie from Oklahoma here. I have two questions and hopefully some of you men can help me. My husband is 53 and very stubborn. Yes, I mean STUBBORN. He has always been such a mellow man and now he seems full of anxiety, and he is not fun to be around. We went to New Mexico for a 4 day trip and I noticed that after 2 to 3 hours after eating, he would get anxious and gripey. I told him I thought maybe his blood suger was off and that he should eat some crackers when he felt like that. It did help him and he would calm down. Could he be going through midlife crisis? Anway, I made a list for him to take to the doc and he didn't even talk to him about it. The list was: blood test for diabetes, thyroid, and anxiety. What should I do? I asked him if I could go along with him and he said " no " . Please men....help me with this. Also, now to me. I take 2 pills daily of mino. I know I am getting better every day...trying to walk and watch what I eat. I'm 54, dx with sd and I'm gaining weight through my middle. I often wonder if it is caused by some of the meds I'm on. I take Lyrica, ultram, percocet and synthroid (Graves disease years ago....now hypothyroid). Plus....I'm really depressed. I try really hard to smile and put on a " happy " face, however, I have a problem taking antidepressants....they make me feel weird and numb. I started back on estrogen due to having a total hysterectomy 2 years ago....it helps the hot flashes. To say it all very simply.....I don't really like myself right now. I often wonder if it is the state of the world, since I am so hypersensitive to everything. I really hate to whine....because that isn't me. And Maritza...my sweet friend....thank you for all of your support. I really don't know what I would do without you. I would appreciate any advice. Thanks for listening. Susie To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hey, Susie! Sally in L Rock here. I think we may have done a lot of e-mailing to each other when I lived in the DC area. Is your hubby a professor and did you/do you home school your kids? At any rate, I know u asked the men for help w/your hubby but I thought I'd say that spouses tend not to listen to each other (at least we don't let on:)!, and your hubby is his own man and may not want to go thru all those tests, meds, diagnostic nightmares, etc. So, try to let him do his own thing. My favorite psych saying (I have a masters in counseling psychology) is: The ONLY person you can control is yourself and YOUR reactions to other people. Further, I see that you say A/Depressants (AD's) make you feel weird and numb. Give some other kind a chance-Most take 4-8 wks to kick in and all have just a little difference in their chemical make-up, so maybe one SSRI (serotonin reuptake inhibitor), ie Prozac, may not work for you but another will. Also, most AD's take away your sex drive-Isn't that ironic?! When you're depressed, sex is usu the last thing on your mind, then fnally you feel better but lose your sex drive-YIKES. I do know of one AD-Wellbutrin, that does not make you lose your sex drive (or make you impotent, in the case of men). The generic name is bupropion and it's the same AD you see advertised in those stop smoking commercials-Weird, huh? And an extra bonus with WB is that 5 lbs or more weight LOSS is listed as a side effect vs most AD's putting wt on! I'm 52 and fight to keep my wt down, so that was a very appealing little side effect for me... Depression sucks, Susie and don't forget that these d--- diseases can really depress us, too. So hang in there, girl, and think about getting some help, OK? Hugs! Sally in L. Rock rheumatic questions Hi, Susie from Oklahoma here. I have two questions and hopefully some of you men can help me. My husband is 53 and very stubborn. Yes, I mean STUBBORN. He has always been such a mellow man and now he seems full of anxiety, and he is not fun to be around. We went to New Mexico for a 4 day trip and I noticed that after 2 to 3 hours after eating, he would get anxious and gripey. I told him I thought maybe his blood suger was off and that he should eat some crackers when he felt like that. It did help him and he would calm down. Could he be going through midlife crisis? Anway, I made a list for him to take to the doc and he didn't even talk to him about it. The list was: blood test for diabetes, thyroid, and anxiety. What should I do? I asked him if I could go along with him and he said " no " . Please men....help me with this. Also, now to me. I take 2 pills daily of mino. I know I am getting better every day...trying to walk and watch what I eat. I'm 54, dx with sd and I'm gaining weight through my middle. I often wonder if it is caused by some of the meds I'm on. I take Lyrica, ultram, percocet and synthroid (Graves disease years ago....now hypothyroid). Plus....I'm really depressed. I try really hard to smile and put on a " happy " face, however, I have a problem taking antidepressants....they make me feel weird and numb. I started back on estrogen due to having a total hysterectomy 2 years ago....it helps the hot flashes. To say it all very simply.....I don't really like myself right now. I often wonder if it is the state of the world, since I am so hypersensitive to everything. I really hate to whine....because that isn't me. And Maritza...my sweet friend....thank you for all of your support. I really don't know what I would do without you. I would appreciate any advice. Thanks for listening. Susie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 my daughter is on her 2nd helmet and is having NCR next month. I have had some drs tell me she does not even need to wear a helmet to she needs surgery. I think its who you ask. But from what I have gathered from various neurosurgeons is that they tend to not fit kids for helmets who are after 14 months old. Our daughter got her first helmet in May (10 months old but 8.5 corrected) The helmet was adjusted so much that she was not able to wear it so they casted her next month for another helmet. When we asked about the 2nd helmet even working since she was 13 months (11.5) corrected we were told that having the helmet on could possibly lessen the severity of surgery. So we are keeping the helmet on until next month just so maybe there is a slight chance that she will have an easier time. And we too have questioned NCR, helmets not using helmets etc. Our take is of course we are going to do whatever it takes. She actually does not mind wearing the helmet and when its off she tries to put it back on. I will say though that one thing when she has the helmet off she tends to not realize and bumps her head a lot. So that bothers me but all in all I am still putting the helmet on her even though she is older just in case. Hopes this helps some. If you find out about NCR please pass it on as our daughter will be having it next month. I just would like to know what we will be up against. Mother of Maddie, 13.5months 12 months adj Prenat Severe Plagio and Con Tort and PVLtinkerbell76266 <tinkerbell76266@...> wrote: i have a few questions i was wondering if you could help me? 1 st question: has any one heard of NCR (neuroCranial Restructuring)? and has been successful fo any one if you know any one who did it? 2 nd question: do you recommend getting a 13 month old into a helmet? if your child is older than 12 months did you see any improvement from the helmet? 3rd? my daughter has plagio and is and 8 on a scale of 1 to 10 (what the fr said) but she is 13 months old corrected age 16 months birthday ( she is a preemie) 4th question? has any one delt with IHC insurance and won? thank you every one that could help me!!!jayne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2006 Report Share Posted September 13, 2006 Hi Jayne! I'm not sure if you heard of NCR on the older plagio group? If not, and want more information, be sure to check out that group - several of us on there have pursued NCR for our children, and have been very pleased with the results so far. My son is 24 months, and went through a total of 4 bands/helmets, and I have actually been the happiest with the results from NCR. After 3 4-treatment series, I have seen his plagio basically disappear, his face is now symmetrical in the mirror, his eye assymetry disappeared, the appearance of cranial height is mostly gone, and his forehead looks much better than it did. He still is somewhat brachy, and the right side of his head above his ear comes out just slightly further than the left, but I no longer worry about anyone thinking anything strange about his head. I was very heartsick after we finished our bands, because although they had improved some things, I felt like they had altered the appearance of other things. Since NCR, I feel like I have his " right " appearance back, and my sadness is gone, which is honestly a miracle to me - I thought I would have to live with grief over his head my whole life. If you have anymore questions, feel free to email me - I HIGHLY recommend this procedure. Kentucky > > i have a few questions i was wondering if you could help me? > 1 st question: has any one heard of NCR (neuroCranial Restructuring)? and has been > successful fo any one if you know any one who did it? > 2 nd question: do you recommend getting a 13 month old into a helmet? if your child is older > than 12 months did you see any improvement from the helmet? > 3rd? my daughter has plagio and is and 8 on a scale of 1 to 10 (what the fr said) but she is > 13 months old corrected age 16 months birthday ( she is a preemie) > 4th question? has any one delt with IHC insurance and won? > thank you every one that could help me!!! > jayne > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Kathy, How was the diagnosis of psoriatic arthritis made? Through blood work, exam findings, symptoms, do you have dermal psoriasis (patchy scales on your skin)? Decreased thyroid function is a common symptom of rheumatologic conditions and it can be a condition by itself. You should definatley have your thyroid levels checked. Dr. JES -------------- Original message -------------- From: " Kathy " <sunbriar@...> Hi, Ive been told I have psoriatic arthritis, they put me on methatrexate. Ive been trying to read up on the marshall protocall also, but Ive been told that thyroid also can cause simialar symptoms and I want to have that checked out too. Id appreciate any comments on the methatexate and also comment on simialritys of thyroid to PA ? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2007 Report Share Posted April 18, 2007 Hi, Kathy: There are some cases of PsA being caused by celiac/sprue. It would also be good to get checked for HLA B27 for AS or B51 for Behcet's if genetically susceptible. Hypoparathyroidism can cause a bone-mismanagement arthritis, and possibly thyroid conditions can mimic some arthritides, but this would be secondary to rapid weight gain or loss, I would think. Good luck to You, Kathy <sunbriar@...> wrote: Hi, Ive been told I have psoriatic arthritis, they put me on methatrexate. Ive been trying to read up on the marshall protocall also, but Ive been told that thyroid also can cause simialar symptoms and I want to have that checked out too. Id appreciate any comments on the methatexate and also comment on simialritys of thyroid to PA ? Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Hi , That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the " dent " above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all! , mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17) Cape Cod, Ma http://hannahsnoggin.typepad.com > > Hi, > I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Welcome ! I am a moderator on this board, have a daughter w/ torticollis and plagio. AND I also live in southern california!! :-) Feel free to email me off board if you want. I am more than willing to share any info about my daughters journey and about Plagio in general. Jen and Luli - 17 mo. Left Tort - Right Plagio - Hanger Band Grad - CA tallulah jayne www.babiesonline.com/babies/j/jens5th/ Questions Hi, I am a graduate nursing student in Southern California. I will be graduating with a Pediatric Nurse Practitioner and Parent-Child Clinical Nurse Specialist this summer. I am writing to you because I was hoping to get some information from parents who have or had children with deformational plagiocephaly. My comprehensive exam is focusing on deformational plagiocephaly. Unfortunately, in my literature search there does not seem to be enough information on any long term developmental or physical problems if this is not treated. I also would like to hear from parents and their personal experience with this problem. I would greatly appreciate any insight, references or direction with my inquiry. Thank you so very much. Betco, RN, MSN student AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 My son was treated with a DOC band by Cranial Technologies. They are the leader in the industry and are the developers of the DOC band. My son was banded for only 8 weeks, he went from an 11 to a 2. Here are a couple of resources www.capps.org, www.cranialtech.com, www.cranialtherapies.com, www.plagiocephaly.org, www.headsupbaby.com, www.plagiocoach.com Good Luck, and if you have any questions or need more info, feel free to contact me. > > Hi, > I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Why do you think your kids all have it? The way they were inside the womb? They way they came down the birthing canal? I’m not sure why my son has it. It could be from sleeping on his back, but I wonder about the other reasons. I’m considering a c-section for the next one to avoid it, but I’m not even sure it would help. Noah, 4 1/2 months. Plagio – second week in helmet On 5/21/07 2:44 PM, " " <sarahhollis@...> wrote: Hi , That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the " dent " above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all! , mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17) Cape Cod, Ma http://hannahsnoggin.typepad.com > > Hi, > I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 I don't know how my son got it since he doesnt sleep on his back and loves tummy time. He was born very quickly which usually is good for molding, though molding can be different than plagio as molding dissappears. Regardless though even if I knew beyond a shadow of a doubt it was from the birth I would not opt to have surgery to prevent it, the risks to baby and mother in a surgical birth are much greater than the risk of a helmet On 5/21/07, Katzman <elizabethkatzman@...> wrote: Why do you think your kids all have it?The way they were inside the womb? They way they came down the birthing canal?I'm not sure why my son has it. It could be from sleeping on his back, but I wonder about the other reasons. I'm considering a c-section for the next one to avoid it, but I'm not even sure it would help.Noah, 4 1/2 months. Plagio – second week in helmet On 5/21/07 2:44 PM, " " <sarahhollis > wrote: Hi ,That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the " dent " above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all!, mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17)Cape Cod, Ma http://hannahsnoggin.typepad.com--- In Plagiocephaly <mailto:Plagiocephaly%40> , " veronicabetco " <fitmoms@...> wrote:>> Hi,> I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student> -- -SAHmommy and leader to; -5th grade G & T, Jr GS, soccer, cello-1st grade, Brownie; school mtg 5/22-cosleeping, loving to learn always with 2 yr old flairph-cosleeping, babywearing, breastfeeding, all over the place already; NS 5/30, CT casting 6/1 " As the family goes, so goes the nation and so goes the whole world in which we live. " PJPII Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2007 Report Share Posted May 21, 2007 Hi - I had a c-section and my daughter still has plagio. Yes. Her head was perfect when she was born, but became asymmetrical from sleeping on her back etc. My point is...that even if you have a c-section, there are other factors that can still cause plagio. Plus, the recovery from a c-section is horrible! , NY Katzman <elizabethkatzman@...> wrote: Why do you think your kids all have it?The way they were inside the womb? They way they came down the birthing canal?I’m not sure why my son has it. It could be from sleeping on his back, but I wonder about the other reasons.I’m considering a c-section for the next one to avoid it, but I’m not even sure it would help.Noah, 4 1/2 months. Plagio – second week in helmet On 5/21/07 2:44 PM, "" <sarahhollis > wrote: Hi ,That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the "dent" above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all!, mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17)Cape Cod, Mahttp://hannahsnoggin.typepad.com>> Hi,> I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much.> > Betco, RN, MSN student> No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 I had a c-section and my daughter had plagio, so it seems it was from inutero molding. Recovery of a c-section is much longer, if possible I would try to skip it. Durocher <funwith4@...> escribió: I don't know how my son got it since he doesnt sleep on his back and loves tummy time. He was born very quickly which usually is good for molding, though molding can be different than plagio as molding dissappears. Regardless though even if I knew beyond a shadow of a doubt it was from the birth I would not opt to have surgery to prevent it, the risks to baby and mother in a surgical birth are much greater than the risk of a helmet On 5/21/07, Katzman <elizabethkatzman > wrote: Why do you think your kids all have it?The way they were inside the womb? They way they came down the birthing canal?I'm not sure why my son has it. It could be from sleeping on his back, but I wonder about the other reasons. I'm considering a c-section for the next one to avoid it, but I'm not even sure it would help.Noah, 4 1/2 months. Plagio – second week in helmet On 5/21/07 2:44 PM, "" <sarahhollis > wrote: Hi ,That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the "dent" above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all!, mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17)Cape Cod, Ma http://hannahsnoggin.typepad.com--- In Plagiocephaly <mailto:Plagiocephaly%40> , "veronicabetco" <fitmoms@...> wrote:>> Hi,> I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student> -- -SAHmommy and leader to; -5th grade G & T, Jr GS, soccer, cello-1st grade, Brownie; school mtg 5/22-cosleeping, loving to learn always with 2 yr old flairph-cosleeping, babywearing, breastfeeding, all over the place already; NS 5/30, CT casting 6/1 "As the family goes, so goes the nation and so goes the whole world in which we live." PJPII ¡Descubre una nueva forma de obtener respuestas a tus preguntas!Entra en Respuestas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Hello. My Daughter, , was born with Tortocollis and developed right posterior plagiocepahly due to the torticollis. She was treated with a Hanger Cranial Band (from Hanger Prosthetics and Orthotics) from 7mo until 10mo and she got great correction. She corrected from 14mm (cranial vault asymmetry) down to 4mm. Her ears were also asymmetrical and corrected from 7mm to 1.5mm. She was in PT for 5 months for her tort. Feel free to email me directly if you would like any info. ronandjenvelez@ peoplepc.com (no spaces) You may also want to check out the Older plagio group which includes parents of children whose plagio was not treated. They may have some insight on issues/problems if plagio is not treated. OlderPlag/ Jen (2 1/2 years), tort resolved, Hanger Band Grad (5 years) > > Hi, > I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 I agree with we are planning on having one more child and l am having an elective C Section. Since Riley was born you could notice his head shape and l do believe that some factors of this was that he came out upside down and l had a fast labour only 1 hour but Riley was extremely bruised and the midwife made a comment about his head shape then, but my husband and l were to concerned due to some other complications with him at birth., Whether this has contributed to his plagion and tort know one l guess will ever know. We do not concentrate on how he got them but how we are able to correct it for him. It seems very difficult here in Australia to get alot of information as all the internet searches tend to me american or english, but all the same l am very happy that l found this group because so many of you have been able to give me excellent information and advise. Central Queensland Australia Win a BlackBerry device from O2 with . Enter now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 , I know with almost complete certainty that my child's plagio was from intrauterine constraint. He wouldn't drop, I was induced and ended up with an emergency C-section after 23 hours in labor because he couldn't move down. Apparently, my pelvic bones are shaped like a V, where they are supposed to be a more parallel alignment (this is what the ob told me when I was in labor...she even drew a picture for me). Anyway, he had bad conehead at birth, which I know is normal, but just think of all that misalignment, things just don't fit back the way they are supposed to when subjected to that much pressure. My child's plastic surgeon also feels that this is the reason for the plagio and also my baby never has had any tort which can cause plagio down the road. He was holding his head up in the hospital and on his tummy a lot, even on day 5 at home. He slept on his back but we didn't use the swing, bouncy, etc. very often. Anyway, this would indicate to me that subesquent children may also be at risk for plagio due to intrauterine constraint, so with my next one, I will be planning ahead for lots of repo, plus I won't have labor pressures because I'll have to have another section. I do think that plagio can result from external factors like lack of tummy time, swings, etc. etc, but this is not our case. My c-section was not so bad, just a long recovery, but I would never personally opt to have one unless my doctor felt there was some risk to the baby or me (which is what happened to us and unfortunately now I don't have a choice). I would think that you can just be more conscious of repo from the start and hopefully prevent the plagio. a ez <susanamartinezmeyers@...> wrote: I had a c-section and my daughter had plagio, so it seems it was from inutero molding. Recovery of a c-section is much longer, if possible I would try to skip it. Durocher <funwith4gmail> escribió: I don't know how my son got it since he doesnt sleep on his back and loves tummy time. He was born very quickly which usually is good for molding, though molding can be different than plagio as molding dissappears. Regardless though even if I knew beyond a shadow of a doubt it was from the birth I would not opt to have surgery to prevent it, the risks to baby and mother in a surgical birth are much greater than the risk of a helmet On 5/21/07, Katzman <elizabethkatzman > wrote: Why do you think your kids all have it?The way they were inside the womb? They way they came down the birthing canal?I'm not sure why my son has it. It could be from sleeping on his back, but I wonder about the other reasons. I'm considering a c-section for the next one to avoid it, but I'm not even sure it would help.Noah, 4 1/2 months. Plagio – second week in helmet On 5/21/07 2:44 PM, "" <sarahhollis > wrote: Hi ,That's so interesting that your comp exam is on plagio! I'm definitely surprised! I work in an ER and most of the docs there don't even know what plagio is. Four years ago when my daughter was banded, she was my pediatrician's first banded baby (and she has been in practice quite awhile). There are a bunch of studies in our links and files sections, but I'm sure you've already covered most of that. As for personal experience, I've got plenty of it as we now have our second child banded. What exactly are you looking for? I have a website that I had created for my daughter at http://hannahsnoggin.typepad.com that outlines most of our experience. Both of my kids had inutero molding, so even after having gone through the helmet thing with my daughter 4 years ago, we were still not able to avoid it with my son who was born in January. As soon as he was born we noticed his molding, which oddly enough was very similar to my daughter's right down to the "dent" above their left ears. Though we faithfully repositioned him and kept him off his head, he still has severe plagio. He was DOCbanded last week at three months old. My daughter also had very severe plagio and after treatment only has very mild flatness left. She has no long term effects and has in fact always met her milestones ahead and was recently found to have a genius level IQ! The only issues we have now are things like getting sunglasses and bike helmets to fit right. Let me know if I can help you out at all!, mom to Hannah (4yrs, DOCgrad) and Jack (4mos, DOCbanded 5/17)Cape Cod, Ma http://hannahsnoggin.typepad.com--- In Plagiocephaly <mailto:Plagiocephaly%40> , "veronicabetco" <fitmoms@...> wrote:>> Hi,> I am a graduate nursing student in Southern California. I will be > graduating with a Pediatric Nurse Practitioner and Parent-Child > Clinical Nurse Specialist this summer. I am writing to you because I > was hoping to get some information from parents who have or had > children with deformational plagiocephaly. My comprehensive exam is > focusing on deformational plagiocephaly. Unfortunately, in my > literature search there does not seem to be enough information on any > long term developmental or physical problems if this is not treated. I > also would like to hear from parents and their personal experience with > this problem. I would greatly appreciate any insight, references or > direction with my inquiry. Thank you so very much. > > Betco, RN, MSN student> -- -SAHmommy and leader to; -5th grade G & T, Jr GS, soccer, cello-1st grade, Brownie; school mtg 5/22-cosleeping, loving to learn always with 2 yr old flairph-cosleeping, babywearing, breastfeeding, all over the place already; NS 5/30, CT casting 6/1 "As the family goes, so goes the nation and so goes the whole world in which we live." PJPII ¡Descubre una nueva forma de obtener respuestas a tus preguntas!Entra en Respuestas. Sick sense of humor? Visit TV's Comedy with an Edge to see what's on, when. Looking for a deal? Find great prices on flights and hotels with FareChase. Quote Link to comment Share on other sites More sharing options...
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