Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Lynnette, Welcome to the group. Weekends are kind of quiet around here. I'm sure you'll get more resposnes on Monday. I didn't see a listing for Singapore in the database. There are some options in Australia, but I imagine that is very far away. At 4 months of age you still can receive good results with repo. I'm sure our repo parents will chime in. Aggressive repo is a 24/7 job. Here is the link to Repositioning Headquarters ... Plagiocephaly/files/Repositionin g%20Headquarters/ Have you looked at the severity assessment charts? Plagiocephaly/links/Severity_Ass esment_o_001066010492/ Can you post a pic? Have you been taking pics every week or two for comparison? Sometimes they change so subtly you really can't tell without a pic, so maybe you are seeing results. mom to na DOC Grad 2/20/04 --- In Plagiocephaly , " Lynnette Low " <Lynnette@m...> wrote: > > Hi all > > I am new to this group. My little boy, 4 mths now, is diagnosed with a > mild case of torticollis at 6 weeks. Since, we have been helping him > with stretching and repositioning as he has developed a flat spot on the > right head of his head. > > Sad to say, I haven't seen much improvement. I am very distressed by his > misshapened and my worst fear will be if his head will not round out > when he grows older. > > The head band which I read from your emails is not available in where I > live, Singapore, or at least I haven't seen any kids wearing this... > > Would appreciate all your advice and experiences... > > Regards > Lynnette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Lynnette, Welcome to the group! I hope we are able to help you with treatment for your son's plagiocephaly, even if it turns out that you are unable to get access to helmeting or banding therapy! Another treatment option is " aggressive repositioning, " which is keeping the baby off of his flat area as much as humanly possible, literally 24 hours a day if possible. We were able to treat our daughter Remy's plagio/brachy with aggressive repo only. If you would like to see her progress photos, you can find them in the PHOTOS section of the group, BEFORE AND AFTER folder, REPOSITIONED folder. We started when Remy was 5 months old, and continued to reposition her until she was about 13 months old. Usually tort really undermines repo efforts, because the limited range of motion of the neck that a tort baby has makes it nearly impossible to reposition his head. That may be the reason you have not seen much improvement. However, if you are continuing to see improvement in your baby's tort, you may concurrently begin to see better success with head repositioning. Your big challenge could be nighttime repo, because those many hours spent on the flat area can negate repo efforts made in the daytime. How is your baby's sleep position at night? Are you able to keep him off the back of his head nearly all day with products, tummy time, front carriers, or carrying him? As mentioned by a previous poster, we have tried to collect as much helpful ideas about repo here in the group site. There is a ton of repo info in the LINKS/REPOSITIONING folder, and the FILES/REPO HEADQUARTERS folder, if you would like to browse around and see if they give you any good ideas. I also tried looking on the internet to see if I could find any plagiocephaly treatment in Singapore. I was unable to find any mention of it, but did come across one research paper about tort from Singapore (1999), and some info about a cleft palate and craniofacial team at Singapore General Hospital. You could see if anyone knows the person who conducted the study, and maybe they could give you a lead on plagio treatment. Sometimes in locations outside the U.S., Craniofacial and Plastic Surgery departments handle cranial orthoses. I have also seen Hospital Orthotics departments handle plagio treatment. Here is the info I came across if you haven't already researched it: Singapore Medical Journal: Epidemiology, Presentation and Management of Congenital Muscular Torticollis. http://www.sma.org.sg/smj/4011/articles/4011a1.htm Singapore top Cleft Lip and Palate Program - CPT Singapore General Hospital Department of Plastic Surgery Block 6, Level 1 Outram Road 169608 Singapore Phone: 65.6.394.5034 Alt. Phone: 65.6.323.1180 Fax: 65.6.295.1508 Email: gplykl@... Patient Age Range: 0-18 Team Clinical Leader: Yeow Kok Leng, MBBS, FRCS, FRCS (ED),FAMS (Plastic Surgery) Other Contacts:Joanne Cheng, BSC (Nursing), T. H. Lee, BDS,Cert.Ortho (Orthodontics) Singapore General Hospital http://www.sgh.com.sg/ Would you keep us posted on your son's situation, and let us know if you have any questions about repositioning? Also, if you find out that helmets are available in Singapore somewhere, would you please let us know here at the group? I would love to list that informationin our HELMET/BAND DATABASE, in the DATABASE section of the group, to help out any future members that join from Singapore. Take care, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " Lynnette Low " <Lynnette@m...> wrote: > > Hi all > > I am new to this group. My little boy, 4 mths now, is diagnosed with a > mild case of torticollis at 6 weeks. Since, we have been helping him > with stretching and repositioning as he has developed a flat spot on the > right head of his head. > > Sad to say, I haven't seen much improvement. I am very distressed by his > misshapened and my worst fear will be if his head will not round out > when he grows older. > > The head band which I read from your emails is not available in where I > live, Singapore, or at least I haven't seen any kids wearing this... > > Would appreciate all your advice and experiences... > > Regards > Lynnette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 Hi Lynette and welcome to the group! Were you able to find help in the information Christie had given you? I hope we can help you in someway as Christie had stated. Good Luck! Dustie, mom to , DOCGrad'03 Texas --- In Plagiocephaly , " Lynnette Low " <Lynnette@m...> wrote: > > Hi all > > I am new to this group. My little boy, 4 mths now, is diagnosed with a > mild case of torticollis at 6 weeks. Since, we have been helping him > with stretching and repositioning as he has developed a flat spot on the > right head of his head. > > Sad to say, I haven't seen much improvement. I am very distressed by his > misshapened and my worst fear will be if his head will not round out > when he grows older. > > The head band which I read from your emails is not available in where I > live, Singapore, or at least I haven't seen any kids wearing this... > > Would appreciate all your advice and experiences... > > Regards > Lynnette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Jackie, do you have swelling in your elbows or just pain? If you have swelling, it would likely be causing joint damage which is irreversible. Why wait until July to go back into see your doctor? Can't they fit you in now? If you can't do simple things at work, they might need to adjust your medication and waiting can be very detrimental. Jennie > I have not been on this site for probably at least six months. I > just wanted to let everyone know that I appreicate all of their > input. I was diagnosed with RA in 1999 and have been able to > continue working and keep my life semi-normal. Recently I have had > extensive pain in my elbows and now my arms do not straighten out all > of the way. I am taking plaquenil and go back to the dr. in July. > He has told me my arms will not straighten back out and I am becoming > more and more concerned. Simple things like lifting a ream of paper > at work or even a basket of laundry from the dryer at home almost > kills my arms. Hopefully, things will get better. > > Anyway, thanks for all of you sharing you thoughts, feelings and > symptoms. I really do appreicate all of you!! Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Jackie, I would recommend going to see (or at least call) your rheumatologist before July. It sounds as if you may need more aggressive treatment than Plaquenil. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Hi there > I have not been on this site for probably at least six months. I > just wanted to let everyone know that I appreicate all of their > input. I was diagnosed with RA in 1999 and have been able to > continue working and keep my life semi-normal. Recently I have had > extensive pain in my elbows and now my arms do not straighten out all > of the way. I am taking plaquenil and go back to the dr. in July. > He has told me my arms will not straighten back out and I am becoming > more and more concerned. Simple things like lifting a ream of paper > at work or even a basket of laundry from the dryer at home almost > kills my arms. Hopefully, things will get better. > > Anyway, thanks for all of you sharing you thoughts, feelings and > symptoms. I really do appreicate all of you!! Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 , I need to know how to find out what my rights are about my job modifications. I had my principal tell me, yesterday, that I am " only partially disabled " and my Dr notes have no bearing due to that. They are refusing to allow mr to sit during my duties and forcing me to cover classes on my planning time so that I have no break from 8:50 to 4:20 other than a twenty minute lunch even though my Dr. has ordered me to be able to sit during duties, have regular breaks, and cover no classes. He also wants my breaks spread out but my plan is at the start of the day and I have to teach all five classes with no break. I now teach 152 students 7th grade science every day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Call the Office for Civil Rights. In Illinois it's in Chicago. You can find the office for your area if you go online. You are covered under the American with Disabilities Act. Becky Re: [ ] Hi there , I need to know how to find out what my rights are about my job modifications. I had my principal tell me, yesterday, that I am " only partially disabled " and my Dr notes have no bearing due to that. They are refusing to allow mr to sit during my duties and forcing me to cover classes on my planning time so that I have no break from 8:50 to 4:20 other than a twenty minute lunch even though my Dr. has ordered me to be able to sit during duties, have regular breaks, and cover no classes. He also wants my breaks spread out but my plan is at the start of the day and I have to teach all five classes with no break. I now teach 152 students 7th grade science every day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hi Dee Dee, Welcome to the group, glad your here, Tawny > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hi Dee Dee, Welcome to the group, glad your here, Tawny > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Welcome Dee Dee. I'm 51 and have had RA since I was in my early 20's. I'm looking forward to getting to know you. a On Jun 15, 2005, at 5:20 PM, piper_halliwell63 wrote: > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hi Dee Dee, Welcome to the group, glad your here, Tawny > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Hi Dee Dee, Welcome to the group, glad your here, Tawny > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2005 Report Share Posted June 15, 2005 Welcome Dee Dee. I'm 51 and have had RA since I was in my early 20's. I'm looking forward to getting to know you. a On Jun 15, 2005, at 5:20 PM, piper_halliwell63 wrote: > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi Dee Dee, I am 36 and have had RA for 13 years and I am pretty new to the group too. Hope to talk real soon!! Take care,Ida > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi Dee Dee, I am 36 and have had RA for 13 years and I am pretty new to the group too. Hope to talk real soon!! Take care,Ida > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Welcome to our group Dee Dee I am 36 and have had RA for 24 years. Trudy piper_halliwell63 <piper_halliwell63@...> wrote: I just wanted to say hi, I have ra and i have had it for several years now my name is dee dee I'am 38 years young and i just wanted to introduce myself to the group so hi group. thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Welcome to our group Dee Dee I am 36 and have had RA for 24 years. Trudy piper_halliwell63 <piper_halliwell63@...> wrote: I just wanted to say hi, I have ra and i have had it for several years now my name is dee dee I'am 38 years young and i just wanted to introduce myself to the group so hi group. thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi dee dee! Welcome, and blessings to you! Where are you from? I'm in Dallas, Texas, the blast furnace of the southwest. It's supposed to get up to 100 today.....A/C is a mixed blessing for us. Without it you get the lupus flares, with it you get as stiff as the Tin Man before Dorothy took the oil can to him! Oh, well, like we always say....if you don't like the weather in Texas, wait five minutes! Jane > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 Hi dee dee! Welcome, and blessings to you! Where are you from? I'm in Dallas, Texas, the blast furnace of the southwest. It's supposed to get up to 100 today.....A/C is a mixed blessing for us. Without it you get the lupus flares, with it you get as stiff as the Tin Man before Dorothy took the oil can to him! Oh, well, like we always say....if you don't like the weather in Texas, wait five minutes! Jane > I just wanted to say hi, I have ra and i have had it for several years > now my name is dee dee I'am 38 years young and i just wanted to > introduce myself to the group so hi group. > thanks dee dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Dearest Piper, (or is it " Dee Dee " ?) Oh honey, I sure hear your plea! Dealing with the whole SSI nightmare is just that -a nightmare! But as everyone tells me... " Dont give up now! " The initial denial, and the appeal to the denial that is always denied (huh?) are just " obstacles " that SSI hopes you'lle tumble over, and become disillusioned and disheartened, and just give up! I know they bank on that! The creeps! So get back on the saddle - expect your appeal to be declined! Just get all that nonsense over with so you can get to the " good stuff!: " The face-to-face with the JUDGE! Then you can earnestly plead your case...and I was just reading from one of my other groups, that SSI is granted at about 75% at this point! So hang in there! Now the thing with your hands - are you sure you don't have carpal tunnel syndrome? If you think you might, but not sure, post or email me, and we can " go over all the symptoms! " P.S. You might want to read my post " For those new to the group and/or new to the disease " for some pointers on coping with these cruel auto- immune siseases. Hope it helps. Love, > hi there, I'am sorry i have not been very talktive, things here at > home have felt over whelming, i just want to tell every one hi , and > sorry, i just got a lawer for social security it was denide again and > my doc is so great he is helping me , my hands have now gone numb, i > have to keep put down so the blood feel like its coming back to them. > has any one elec had this? i have R.A. for a long time now, i just > feel defeted i cant seem to keep a job any more so now no insureance > oh well , any way thanks i just felt like expressing to some one who > would listen. piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 Dearest Piper, (or is it " Dee Dee " ?) Oh honey, I sure hear your plea! Dealing with the whole SSI nightmare is just that -a nightmare! But as everyone tells me... " Dont give up now! " The initial denial, and the appeal to the denial that is always denied (huh?) are just " obstacles " that SSI hopes you'lle tumble over, and become disillusioned and disheartened, and just give up! I know they bank on that! The creeps! So get back on the saddle - expect your appeal to be declined! Just get all that nonsense over with so you can get to the " good stuff!: " The face-to-face with the JUDGE! Then you can earnestly plead your case...and I was just reading from one of my other groups, that SSI is granted at about 75% at this point! So hang in there! Now the thing with your hands - are you sure you don't have carpal tunnel syndrome? If you think you might, but not sure, post or email me, and we can " go over all the symptoms! " P.S. You might want to read my post " For those new to the group and/or new to the disease " for some pointers on coping with these cruel auto- immune siseases. Hope it helps. Love, > hi there, I'am sorry i have not been very talktive, things here at > home have felt over whelming, i just want to tell every one hi , and > sorry, i just got a lawer for social security it was denide again and > my doc is so great he is helping me , my hands have now gone numb, i > have to keep put down so the blood feel like its coming back to them. > has any one elec had this? i have R.A. for a long time now, i just > feel defeted i cant seem to keep a job any more so now no insureance > oh well , any way thanks i just felt like expressing to some one who > would listen. piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 I'm sorry about your SS being denied, but don't give up. You will need to find an attorney, and let them handle it. It's so sorry that people have to go through this, just to get some help. I also have the numbness too, also in my feet and legs. Just hang in there, and don't give up. If you don't have insurance, can you get state help, such as Medicaid. I'm here if you need to talk, Tawny > hi there, I'am sorry i have not been very talktive, things here at > home have felt over whelming, i just want to tell every one hi , and > sorry, i just got a lawer for social security it was denide again and > my doc is so great he is helping me , my hands have now gone numb, i > have to keep put down so the blood feel like its coming back to them. > has any one elec had this? i have R.A. for a long time now, i just > feel defeted i cant seem to keep a job any more so now no insureance > oh well , any way thanks i just felt like expressing to some one who > would listen. piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2005 Report Share Posted June 23, 2005 I'm sorry about your SS being denied, but don't give up. You will need to find an attorney, and let them handle it. It's so sorry that people have to go through this, just to get some help. I also have the numbness too, also in my feet and legs. Just hang in there, and don't give up. If you don't have insurance, can you get state help, such as Medicaid. I'm here if you need to talk, Tawny > hi there, I'am sorry i have not been very talktive, things here at > home have felt over whelming, i just want to tell every one hi , and > sorry, i just got a lawer for social security it was denide again and > my doc is so great he is helping me , my hands have now gone numb, i > have to keep put down so the blood feel like its coming back to them. > has any one elec had this? i have R.A. for a long time now, i just > feel defeted i cant seem to keep a job any more so now no insureance > oh well , any way thanks i just felt like expressing to some one who > would listen. piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 In a message dated 10/18/2005 5:02:16 PM Eastern Standard Time, yeseniasunlight@... writes: Nioxin can be found at big hair places in the mall some beauty shops carry them, if not, ask them if they will buy it for you. Nioxin won't help much if it's a thyroid problem, so check that first. Nioxin has lots of different products, so it can get expenxive. Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Hello and everyone else who has responded, Thank you first of all for taking the time to give me your help and advice. I've made a list of everyone's suggestions like looking into my thyroid and taking certain vitamins. I hope it all works for me. Thanks again ! Yesenia Maldonado <tmaldonado@...> wrote: I'm , I have Dermatomyositis. Your lose of hair is probably from your medications. Do you take Predisone? That is what I found that made me lose my hair from. Methotrexate was another. I am 37 now and when this started I was around 32. I cried so much everyday I pulled more hair out. But I have found lots of good things and My hair is shoulder length and thick. I drink lots of water a big must. Then go to a health food store not Wal-Mart or any place like that and buy Biotin vitamins. It is wonderful. It won't be a miracle over night but in a few weeks to a month you will see the difference. Also, shampoo is helpful. Nioxin can be found at big hair places in the mall some beauty shops carry them, if not, ask them if they will buy it for you. Try the trial packet which is 3 or 4 bottles and it's about 35.00. I used that First and I highly recommend that. You need good vitamins in your system with all that you are going through. Just don't buy One a day at Wal-Mart. Go to a good health food store. E-mail later if you have more questions and I confused you. Texas Dm, AP 3 years Maldonado --------------------------------- Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
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