Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Hi Kelli, Welcome to the group. I too am in NY and I too have a ! I didn't use CPO though, I traveled to NJ for my daughter's treatment. If I'm not mistaken we have had members use them. I'm sure they'll chime in soon. > Hi everyone my name is Kelli and I have an 8 month old preemie () who has plagio and needs to be cast... Just looking to see if there is anyone elese in the New York area that went to C.P.O. Consulting in Manhatten, NY... This is where out Dr told us to take her my only thing now is getting the insurance to approve the band.. Any advice or words of encouragement is greatly appreciated. > > Thanks > > Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2003 Report Share Posted October 30, 2003 Hi everyone my name is Kelli and I have an 8 month old preemie () who has plagio and needs to be cast... Just looking to see if there is anyone elese in the New York area that went to C.P.O. Consulting in Manhatten, NY... This is where out Dr told us to take her my only thing now is getting the insurance to approve the band.. Any advice or words of encouragement is greatly appreciated. Thanks Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Kelli, I'm still catching up on posts, but just wanted to say welcome. I saw that Rhonda already invited you to the get-together in December... We went to Cranial Tech in Paramus, but I hope you get some good feedback on CPO! Kerri from White Plains 's mom (DOCgrad) > Hi everyone my name is Kelli and I have an 8 month old preemie () who has plagio and needs to be cast... Just looking to see if there is anyone elese in the New York area that went to C.P.O. Consulting in Manhatten, NY... This is where out Dr told us to take her my only thing now is getting the insurance to approve the band.. Any advice or words of encouragement is greatly appreciated. > > Thanks > > Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Emma, Thank you for sharing the story of your sons. That's wonderful that 's head rounded back out, especially since your physicians, etc. told you not to worry about it. I'm impressed that you are being proactive in repositioning Cory; at his very young age, repo should be able to make a big difference. I don't know if you have already been to the LINKS section in the REPOSITIONING folder, but I recently added a bunch of new repo products that may give you some repo ideas. One of the products I found was only sold in the UK. It is the " FULL OF FUN NEWBORN NECK SUPPORT - DUCK " which I could only find at the Toys R Us in the UK. That might help you out with head positioning in the carseat and swing. I would love to know how the Head-n-Back sleep positioner works for you. Take care, Christie (Mom to Repo'd Remy) > Hello all > > My name is Emma and I have 2 children, both boys, (2 years > 3 months) and Cory 8 weeks. I noticed when was only a few > months old that the back of his head was starting to go flat but on > many occasions was told it was nothing to worry about and that it > would correct it'self by the time was 2 years of age. > Although I wasn't worried and trusted the words of my health visitor > I still went on to see my GP who explained to me the meaning of > Plagiocephaly and also confirmed it was not a problem. I then > decided to research plagio on the net and it appears that here in > the UK we do not use any medical intervention or prevention of > plagio. s plagio progressively got worse (it was completely > flat on that back), I was afraid of other parents reactions when > they saw him although only a few people I know made comments about > the shape of his head. By the time was 1 year of age, his > plagio was almost non-existant. When I had my second son, Cory, 8 > weeks ago I made an effort to keep rotating the side I lay him down > to sleep on (although I know we are supposed to lay our baby's on > their backs)in order to prevent plagio but then there was a phase > where he would only sleep in his carseat or swing, he is now 8 weeks > old and I have noticed some very slight flattening to the back of > his head. I am now making sure when he sleeps in the day-time he is > on his side(s) and limiting the time on his back as much as > possible. I have also purchased the head-n-back to sleep positioner, > which is being shipped to the UK for me, as it appears we have > nothing even similar in the UK. I would love to hear some more > ideas/suggestions on re-positioning techniques for Cory even though > his plagio is very slight he is only 8 weeks old and I can only > presume it will worsen over the next few months until he is able to > sit-up? > > Thanks for listening to me rambling on. > > Love > Emma, & Cory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Hi Emma, I just had to say hello and welcome to the group. My husband grew up outside of Pitlochry Scotland, and so I had to send a "Cheers" to you in his honor. Where in the UK are you located? Sounds like you have a pretty good handle on repositioning. Unfortunately, I didn't have a clue as to what was going on with my little girl until she was four months old, and then it was like a light bulb went off in my head. Of course, she had torticollis which complicated matters. Keep us posted on the progress of your children!! And please spread the word there about positioning and tummy time in the UK. Even more so since they are treating it there!! Cheers, Sherri on-Struan and Catriona (DOC banded 9-25) Acworth GAEmma <sweetemz_1978@...> wrote: Hello allMy name is Emma and I have 2 children, both boys, (2 years 3 months) and Cory 8 weeks. I noticed when was only a few months old that the back of his head was starting to go flat but on many occasions was told it was nothing to worry about and that it would correct it'self by the time was 2 years of age. Although I wasn't worried and trusted the words of my health visitor I still went on to see my GP who explained to me the meaning of Plagiocephaly and also confirmed it was not a problem. I then decided to research plagio on the net and it appears that here in the UK we do not use any medical intervention or prevention of plagio. s plagio progressively got worse (it was completely flat on that back), I was afraid of other parents reactions when they saw him although only a few people I know made comments about the shape of his head. By the time was 1 year of age, his plagio was almost non-existant. When I had my second son, Cory, 8 weeks ago I made an effort to keep rotating the side I lay him down to sleep on (although I know we are supposed to lay our baby's on their backs)in order to prevent plagio but then there was a phase where he would only sleep in his carseat or swing, he is now 8 weeks old and I have noticed some very slight flattening to the back of his head. I am now making sure when he sleeps in the day-time he is on his side(s) and limiting the time on his back as much as possible. I have also purchased the head-n-back to sleep positioner, which is being shipped to the UK for me, as it appears we have nothing even similar in the UK. I would love to hear some more ideas/suggestions on re-positioning techniques for Cory even though his plagio is very slight he is only 8 weeks old and I can only presume it will worsen over the next few months until he is able to sit-up?Thanks for listening to me rambling on.LoveEmma, & CoryFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2003 Report Share Posted October 31, 2003 Hi Sherri I am from Nottingham, in the East Midlands area. I have done lots of research on plagio since my first son, devloped it but it seems we are not clued up on it at all over here. In fact when I mentioned to my GP about the bands/helmets you use over there, he laughed. I am only aware of the one surgeon here that will treat plagio and that information was kindly given to me by a member of this group. I was fortunate that my GP was correct in saying that s head would correct it'self but it is now becoming clearer that there was a huge possibility it may not have done which is why I am so keen to prevent Cory's very slight plagio getting worse. thanks for replying Emma, Mitch & Cory > Hello all > > My name is Emma and I have 2 children, both boys, (2 years > 3 months) and Cory 8 weeks. I noticed when was only a few > months old that the back of his head was starting to go flat but on > many occasions was told it was nothing to worry about and that it > would correct it'self by the time was 2 years of age. > Although I wasn't worried and trusted the words of my health visitor > I still went on to see my GP who explained to me the meaning of > Plagiocephaly and also confirmed it was not a problem. I then > decided to research plagio on the net and it appears that here in > the UK we do not use any medical intervention or prevention of > plagio. s plagio progressively got worse (it was completely > flat on that back), I was afraid of other parents reactions when > they saw him although only a few people I know made comments about > the shape of his head. By the time was 1 year of age, his > plagio was almost non-existant. When I had my second son, Cory, 8 > weeks ago I made an effort to keep rotating the side I lay him down > to sleep on (although I know we are supposed to lay our baby's on > their backs)in order to prevent plagio but then there was a phase > where he would only sleep in his carseat or swing, he is now 8 weeks > old and I have noticed some very slight flattening to the back of > his head. I am now making sure when he sleeps in the day-time he is > on his side(s) and limiting the time on his back as much as > possible. I have also purchased the head-n-back to sleep positioner, > which is being shipped to the UK for me, as it appears we have > nothing even similar in the UK. I would love to hear some more > ideas/suggestions on re-positioning techniques for Cory even though > his plagio is very slight he is only 8 weeks old and I can only > presume it will worsen over the next few months until he is able to > sit-up? > > Thanks for listening to me rambling on. > > Love > Emma, & Cory > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 <<I'm looking for guidance! I'm not opposed to going it alone, but if there might be someone in the Atlanta area (or anywhere) I would LOVE the security of being under a practitioner's guidance.>> I'm in the Florida Panhandle. The closest DAN! doctors for us are in Lousianna, but they are EXCELLENT! Dr. Cave is in Baton Rouge and Dr. El Dahr is in New Orleans. Deborah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 We're in NJ but are working with the Pfeiffer Treatment Center in Illinois. I understand that if you have a pediatrician who's willing, the Pfeiffer docs will phone consult through the process. Not sure if this is a great fit for your circumstances, but it might be worth pursuing... > Hi. My name is and my daughter na and I live in > Georgia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 Yes its expensive (Well it would be for me LOL) <A HREF= " http://www.hriptc.org/ " >http://www.hriptc.org/</A> HTH Mandi in UK > How do I get in contact with them? Is it expensive? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 How do I get in contact with them? Is it expensive? > > Hi. My name is and my daughter na and I live in > > Georgia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2003 Report Share Posted November 13, 2003 www.hriptc.org Because Pfeiffer is a non-profit, their fees are shockingly low. We had a three-hour consult and tons of blood, hair and stool tests done for $1,200. Because the Pfeiffer fees were so reasonable, and because we applied for pre-approval with our health insurance, they paid all but a few dollars of the visit. If you pursue this with your insurance company, make sure you tell them you're exploring BIOCHEMICAL IMBALANCES, and never, ever, mention the word autism. On the Pfeiffer site they give you suggestions for how to word your statement to the insurance company. You may e-mail me privately if you have trouble locating any info. > > > Hi. My name is and my daughter na and I live in > > > Georgia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 Would you happen to know if Medicaid picks up any of the costs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2003 Report Share Posted November 14, 2003 If I remember correctly, Absolutely Not. I think everything at Pfeiffer that I signed had some kind of Medicaid disclaimer. > Would you happen to know if Medicaid picks up any of the costs? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Hi Amber! Welcome to the group. My son Aidan was 6.5 months when he got his helmet and he had no problem at all adjusting. He never had red marks during the 3 hour checks the first 48 hours. He wore it 23 hours from day 1. He has not cared at all about the helmet and doesn't even know it is on. Hopefully because of 's age it will go smoothly for you as well. What kind of band is getting. Deb w/ Aidan (DOC 10/21) New to the Group Hi everyone!I am new to this group and just wanted to tell everyone hi. I have a 6 month girl named who hopefully will be getting her helmet soon. I just got the insurance to cover all but $300 so yeah me! What should my husband and I expect when we first get the helmet? ThanksAmberFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Hi Amber & welcome to our group: Has been casted for her helmet yet? Do you know what type she'll be receiving (DOCband, STARband, another type?). That's GREAT to hear your ins. is covering most of the cost!! What a relief. You will most likely be very surprised at how well will adjust to her new helmet. MOst babies, mine included, don't notice em for a bit! I couldn't believe it. My daughter slept as normal too. Some babies do take a bit longer to adjust, although after a few days or so, they're fine with it. Debbie Abby's mom DOCGrad MI > Hi everyone! > I am new to this group and just wanted to tell everyone hi. I have a > 6 month girl named who hopefully will be getting her helmet > soon. I just got the insurance to cover all but $300 so yeah me! > What should my husband and I expect when we first get the helmet? > Thanks > Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 She has been casted. I don't know what type she is going to get. It is going to be made by a local (utah) company. She is such a mellow baby any way so I hope she dosen't notice Amber > > Hi everyone! > > I am new to this group and just wanted to tell everyone hi. I > have a > > 6 month girl named who hopefully will be getting her helmet > > soon. I just got the insurance to cover all but $300 so yeah me! > > What should my husband and I expect when we first get the helmet? > > Thanks > > Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2003 Report Share Posted November 17, 2003 Hi Amber, I see that you've already gotten some great replies so I'll just welcome you to the group! > Hi everyone! > I am new to this group and just wanted to tell everyone hi. I have a > 6 month girl named who hopefully will be getting her helmet > soon. I just got the insurance to cover all but $300 so yeah me! > What should my husband and I expect when we first get the helmet? > Thanks > Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 I wanted to welcome you to the group! Do you know what type of helmet your daughter will be getting. Angie and Jenna(STAR grad) New to the Group Hi everyone!I am new to this group and just wanted to tell everyone hi. I have a 6 month girl named who hopefully will be getting her helmet soon. I just got the insurance to cover all but $300 so yeah me! What should my husband and I expect when we first get the helmet? ThanksAmberFor more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2003 Report Share Posted November 18, 2003 Amber, I see you have rec'd lots of tips so I will just welcome you to the group. Let us know when gets her band. Dustie > Hi everyone! > I am new to this group and just wanted to tell everyone hi. I have a > 6 month girl named who hopefully will be getting her helmet > soon. I just got the insurance to cover all but $300 so yeah me! > What should my husband and I expect when we first get the helmet? > Thanks > Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 Dear Laurel, welcome to the group. My grandson Benny not only knows when he is in a doctor's office but he *definitely* knows when he is being tested or evaluated and it upsets him a lot. He tends to be silent or scream and be rather uncoooperative rather than talking at such times. Or if he says anything, it is " Out! " meaning his intense preference would be to leave... Just on the hopeful side, I remember baptizing a little Pierre Robin Syndrome newborn in the hospital some years ago--she got aspiration pneumonia before they noticed anything was wrong with her. Turned blue also. She is now doing very well, the last time I visited the parish she was serving as the crucifer (that means she led the procession in carrying the cross), she must be 11 or 12 years old. I asked her great-grandmother how she was doing and she said, " Hannah? " she's just herself. " Hannah spoke to me about the fact she knew I had baptized her. (Not being " religious " here, I'm just telling you about my contacts with her--I'm a retired priest.) Her parents were glad she only required one surgery for the palate. I remember her voice quality being a little unusual as a small child, but now it seems pretty good. Peace, Kathy E. On Nov 24, 2003, at 10:55 PM, & Laurel wrote: > Could this be a " Lab Coat Syndrome " kind of thing? He definitely > knows when he is in a doctor's office. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2003 Report Share Posted December 9, 2003 Hi-- Check these two websites for further info: http://www.shopinservice.com/latetalker.htm http://www.cherab.org/ Also on the message board, you can go back and read old archived messages... and just stay on and ask questions from time to time! W --- In , " Laurie " <laurietrn@y...> wrote: > Hi... > My son has had speech problems ever since he has been talking, and > after going through 3 years of special ed the diagnosis came back as > Developmental Apraxia. I know that we are going to be in for a long > haul with his speech, but does anyone have any in sight to help > improve his speech? > > Laurie... 8 years 2 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Hi Janet, Welcome to the group. I think we can handle both the silly and the bad moments. I specialize in silly, can get downright goofy at times. I'm Judi, age 57 (chronologically--age 12 mentally), married 28 years, mother of one, grandmother of 4, including 9-month old triplets and their 3 year old brother. I have fibromyalgia, osteoarthritis, and Dercum's disease, so I have my share of bad days. But logging on here usually either cheers me up or gives me some good information to go on. and a are the best. Happy Holidays, Judi > Hi there, > I just signed up to this group and im hoping to meet some people to > share some silly and bad moments with. Im 41, married, female and > have 3 daughters. I have dermatomyositis/chronic rheumatism > momaof340 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Welcome, Janet! Yes, sharing of all kinds goes on here. People in the group have been on the quiet side lately, but post as often as you like and, hopefully, you'll find the kind of support or friendship you're looking for. I hope you like it here. [ ] New to the group > Hi there, > I just signed up to this group and im hoping to meet some people to > share some silly and bad moments with. Im 41, married, female and > have 3 daughters. I have dermatomyositis/chronic rheumatism > momaof340 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Pain in the soles of my feet? I have had RA now for about 5 years now: treated but mostly untreated since I live in the Florida Keys where there is a tremendous lack of doctors or they do not take Medicare and I " make too much to be on Medicaid " ?! Recently I have developed two new symptoms. Intense pain in the bottom/soles of my feet that is so bad it wakes me up at night and intense pain about three inches down my arms and under my arm pits and often do not have any feeling or control of my hands. Literally they become paralyzed. Any ideas? Panicking in Florida; Thanks Jacquie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 you foot pain sounds like plantar fascitis. i had some physical therapy. mostly involved massage and stretching. my foot dr told me i needed better orthodics, i haven't tried this yet as i am still searching to see if i can get some from medicare. i just got a brochure from a company called dr comfort, but the dr is over 30 miles away. i'm gonna xall and see if i can find one closer. kathy in il Quote Link to comment Share on other sites More sharing options...
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