Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Hello and welcome to the group. My daughter wore a helmet (starband) last year, so I know exactly how scary the process is at first. But honestly once you get the helmet it gets so much easier. you won't need to worry how she sleeps and within a few weeks you'll most likely start seeing results. My daughter has always been a happy baby, and stayed that way during her entire treatment. Since her case sounds relatively minor it should be fairly quick. Good luck with everything and feel free to ask any questions or just come her to share. take care. -christine sydney 17 mo starband grad > > We just took our daughter is to the childrens hospital this week > and was told she needed a helmet. We are very worried about this they > tell us her case is mild but she also has abnormalities in her > forehead and her one ear is set a little off. We are new to all this > so we are trying to talk to others who have or are currently > experiencing this. We would appreciate and input anyone can give us. > She has been fit for the helmet and she will be getting it on July > 2nd. is is a very heathly child otherwise and we are so grateful > for that, Thank You > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2007 Report Share Posted June 23, 2007 Welcome! My daughter also had a mild/mod case and we banded too b/c of facial asymetries. Forehead bossing and ear offset are very common and a part of plagio. How old is is? You will find that this group is very helpful and supportive!!!  Jen and Luli - 18 mo. Left Tort - Right Plagio - Hanger Band Grad - CA tallulah jayne www.babiesonline.com/babies/j/jens5th/ new to the group We just took our daughter is to the childrens hospital this week and was told she needed a helmet. We are very worried about this they tell us her case is mild but she also has abnormalities in her forehead and her one ear is set a little off. We are new to all this so we are trying to talk to others who have or are currently experiencing this. We would appreciate and input anyone can give us. She has been fit for the helmet and she will be getting it on July 2nd. is is a very heathly child otherwise and we are so grateful for that, Thank You 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 June 23, 2007 Report Share Posted June 23, 2007 > > > Welcome! > > My daughter also had a mild/mod case and we banded too b/c of facial asymetries. Forehead bossing and ear offset are very common and a part of plagio. > How old is is? > > You will find that this group is very helpful and supportive!!! > > > >  Jen and Luli - 18 mo. > Left Tort - Right Plagio - Hanger Band Grad - CA > tallulah jayne > www.babiesonline.com/babies/j/jens5th/ > > > new to the group > > > > > > > We just took our daughter is to the childrens hospital this week > and was told she needed a helmet. We are very worried about this they > tell us her case is mild but she also has abnormalities in her > forehead and her one ear is set a little off. We are new to all this > so we are trying to talk to others who have or are currently > experiencing this. We would appreciate and input anyone can give us. > She has been fit for the helmet and she will be getting it on July > 2nd. is is a very heathly child otherwise and we are so grateful > for that, Thank You > > > > > > _____________________________________________________________________ ___ > AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. > is is 5mo old. She is also going to Easter Seals for some therapy . This is all very overwhelming. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2007 Report Share Posted June 25, 2007 Heidi Mendelsohn wrote: > > >I have Fibro as well as RA. I cannot take Morphine or most of tghe > other pain meds as it causes vomiting. > I take Aciphex for my stomach and keep Phenergan around for nausea. Once I got used to the morphine, it didn't make me sick anymore. The methadone, no way will I ever try to take that again. My gastro doc said all opiates are hard on your stomach. Nina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 Hello and welcome to the group, cranial tech has a very good reputation, although some parents feel the consultation is a bit of a sales pitch. I don't think they recommend bands that aren't needed. however you might want a second opinion from a specialist such as a cranial facial plastic surgeon (that is who prescribed our band). you need a prescription to get a band in any case. I wonder why did you go for the consult if you don't think your child has plagio? there are lots of photos in the photo section of kids with plagio to compare with. Also if you post pics of your childs head you can get some opinions here. The top view usually shows it the most, but it depends on your child's head shape. How old is your child? under 6 mo can often be corrected by repositioning your child (see files/repo tips). if the plagio is mild-moderate and there is no neck involvement repo can be very effective. children who do have tort, or are older than 6 mo are generally difficult to reposition. my daughter had severe brachy (flat in back) but I didn't realize how bad it was until we saw a specialist. we got a starband and had great results. take care. -christine sydney 18 mo starband grad > > hi! has anyone dealt with the Cranial Tech people in charlotte, nc or > anywhere else? i need positive or negative feedback, please! my husband > and i went to our " free " visit and they suggested our son get a doc > band. i really don't think he has plagiocephaly and i'm worried that > they're just " saying " he needs a doc band. do they tell everyone they > need a doc band??? help??? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2007 Report Share Posted July 5, 2007 CT Charlotte is where we went for our consult too and we are just looking over the measurements now wondering how he can have such a difference and the neuro say he doesnt need a band, it is mind boggling. We have only been for our consult there so cannot say from first hand experience on them but I know someone who is on their 4th band there, someone else who graduated after 2 and a 3rd that had 1 from there plus I have talked to at least 2 others from the group that had theirs done there and I have never heard anything negative. The one whose child had 2 even works in the medical field and they were extremely satisfied with Charlotte CT. I originally thought the same thing, of course they are going to say he needs one. But like the major expenditure with minimal insurance coverage I compared to orthodontia. We went in for consults at 4 different orthodontists before we started my dds braces. One didnt think she needed anything yet (which would mean she would be going in every 6 mo for FREE consults until they decide to drain our $$ lol), 1 wanted to pull 2 teeth, and 2 wanted her to be in braces right away. Yes, they standed to make a couple grand on her teeth (she needed 2 sets of braces, face gear and a frenulunectomy) but not every one was saying to treat her nor were they saying to treat her in the same manner despite being able to make $$ from her. In the end we had to go to several and decide which ones we considered to be the " experts " . I was just as paranoid about psychiatrists too and low and behold when we finally got desperate enough to take my dd they didnt rush to do regular visits and meds either. I guess I shouldnt be so cynical b/c the overdiagnosis professionals are probably in the minority. Basically once I remembered that CT is a medical group, covered by many insurances with certified therapists, that I realised they dont need to tell ppl who dont need a band that they do. But I am guessing that they do say they need a band to the majority of ppl who come in b/c if they didnt need a band a parent wouldnt see any reason to bring them in. On 7/5/07, hannah <hannahbudic@...> wrote: hi! has anyone dealt with the Cranial Tech people in charlotte, nc or anywhere else? i need positive or negative feedback, please! my husband and i went to our " free " visit and they suggested our son get a doc band. i really don't think he has plagiocephaly and i'm worried that they're just " saying " he needs a doc band. do they tell everyone they need a doc band??? help??? -- -SAHmommy and leader to; -rising G & T 6th grader, Jr GS, soccer, cello-rising 2nd grader, Brownie; ADHD w/ anxiety-cosleeping, baby signing, loving to learn always with 2 yr old flairph-cosleeping, babywearing, breastfeeding, all over the place already; mild plagiocephaly/facial assymetry, repositioning until 8/4 " you may never see that stranger again but you'll have the same kids for the rest of your life, so who should you care about impressing? " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2007 Report Share Posted July 6, 2007 Hi, We dealt with CT in Phoenix, AZ. They were awesome! May I ask, why did you take your son for a consult if you don't believe he has plagio? When I went to CT at 3 mos. and 6.5 mos (both times they said he'd benefit from the band...our choice and ped.s to wait till 6.5) I went because I didn't like my son's head shape and knew he needed something. CT does make money from the bands but I don't think they tell everyone to band. I think they only tell people that they believe will benefit (ie. they have a mis-shappened ahead beyond what is considered normal). Good luck in your decision. LIsa > > hi! has anyone dealt with the Cranial Tech people in charlotte, nc or > anywhere else? i need positive or negative feedback, please! my husband > and i went to our " free " visit and they suggested our son get a doc > band. i really don't think he has plagiocephaly and i'm worried that > they're just " saying " he needs a doc band. do they tell everyone they > need a doc band??? help??? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Hi Everyone, My name is Peggy, from ohio..I am a single parent three lovely children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and bipolar,daughter no signs yet but symptons of adhd,youngest has adhd agression issues,developemental delays,bone and muscle probs,and now showing signs of juvenilne rheumatoid arthritis.. My youngest is going to be referred to a pediatric arthritis dr to see what is going on with him..That means further trips to the main childrens hospital in cincinnati,ohio..I am on the go as it is with his therapies and oldest sons appts..I thought I would check this group out and get some insight on juvenile rheumatoid arthritis..Hope to hear from everyone.. Have a Happy Thursday!!!! Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 Good morning Peggy; Here is an angle that you should check out.My dodtor is the best AP doc in Ontario and treats many children that have both rheumatoid diseases and ADHD.She has found that children with ADHD are likely to be Celiac and therefore have many food sensitivities.She often gets them cured without having to resort to antibiotics.Read www.celiac.com and then order the test that you want at www.enterolab.com They mail you a kit,you send in s stool sample and they e-mail the results.If they have Celiac(wich is usually inherited) they will likely have issues with other foods because of the damage done by gluten.You have to start cooking from scratch and never,never used anything already prepared or from a package because of hidden gluten and food colourings,not to mention chemical preservatives and flavour enhancers.Hope this helps. Lynne G./SD peggy zinn wrote: > Hi Everyone, > My name is Peggy, from ohio..I am a single parent three lovely > children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and > bipolar,daughter no signs yet but symptons of adhd,youngest has adhd > agression issues,developemental delays,bone and muscle probs,and now > showing signs of juvenilne rheumatoid arthritis.. > My youngest is going to be referred to a pediatric arthritis dr to > see what is going on with him..That means further trips to the main > childrens hospital in cincinnati,ohio..I am on the go as it is with > his therapies and oldest sons appts..I thought I would check this > group out and get some insight on juvenile rheumatoid arthritis..Hope > to hear from everyone.. > Have a Happy Thursday!!!! > > Peggy > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 >Hi Everyone, >My name is Peggy, from ohio..I am a single parent three lovely >children..Ages are 15boy, 7girl, 5boy.. Oldest has adhd and >bipolar,daughter no signs yet but symptons of adhd,youngest has adhd >agression issues,developemental delays,bone and muscle probs,and now >showing signs of juvenilne rheumatoid arthritis.. Why not consider going to a scientifically-oriented ND (naturalpath) in addition to the regular doctors? The naturalpathic drs. may be able to do further diagnostic work. -- Esther Warkov, Ph.D Member OMTA, SMTA Founder, The Piano Connection www.thepianoconnection.com 971.255-0388 (Portland) pianos@... esther_warkov@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Diane, I know from experience what caring for someone with dementia can do to you. It is physically and mentally draining. Then add the RA on top of that..... I hope you are able to take some time for yourself , get enough rest and just have time to relax. My thoughts are with you, Dianne ************************************** See what's new at http://www.aol.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 > > Hi Everyone, > I am new to the group. I never even thought of looking for a support > group because I have been so involved in dealing with Mom and her > Alzheimer's and being her caregiver that I haven't taken such great > care of myself for the past 7 years. I was DX about 4 years ago. I am > now on Methotrexate and folic acid and also have Meloxicam and > prednisone if I need it, but I really try not to take it... > I have good days and bad days and some very bad days when I have a > flare-up. But, I am always tired. I have blood work done and it > checks out ok, they say. I could sleep all day. I just feel > exhausted. I just can't believe that this can all be from having RA. > I know other people that say they have it and they don't seem to be so > tired...I am 57....by the way... > Do you think it's the meds? Or just the disease? > Any ideas would be appreciated... > Thanks, > Diane aka Carol > Hi i understand what you are going through. I took care of my husband who suffered from cancer for two years and I did everything for him the stress can cause the pain and tiredness to intenseify greatly You have to take the time to rest even if only for 15 minutes here and there. I felt exhausted all the time too! I hate taken medicine but I have found out it is better to take it when needed than to not and the symptoms get even worse and harder to control. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 -Hi Diane, Yes, I do get to rest. Not always by choice but just because i can't move anymore....and i just sleep...After 7 years my Mom finally went into a NH in May and that has made things a lot less stressful and she is happier which is the best part. I find it is a very frustrating disease and you don't get much understanding from anyone...they just always say, oh, I have arthritis too...and i don't get into explaining the difference between having a little arthritis in a finger and having RA... I am trying to take better care of myself...and eat better too... Thanks for your response... Carol aka Diane -- In , Dianneis30@... wrote: > > Diane, > I know from experience what caring for someone with dementia can do to you. > It is physically and mentally draining. Then add the RA on top of that..... I > hope you are able to take some time for yourself , get enough rest and just > have time to relax. > My thoughts are with you, > Dianne > > > > ************************************** See what's new at http://www.aol.com > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Sorry to hear about your husband. It is a very difficult thing to take care of someone who is sick. I do get to rest because I have to. Even when I go to the NH to visit Mom, I take a rest in her bed. I would always do that at her house so she likes it and she feels like she is taking care of me...It's an hours drive one way, so after being there for 8 or 9 hours, it's a long ride home...and it kills...but, I can't go every day, so when I go I like to make the day of it....I am going on Wednesday for the day...I hope it's a good day...when it's stressful, I notice my pain level goes up...it's amazing what stress will do to our bodies... Have a good night and thanks for writing.... Carol aka Diane > > > > Hi Everyone, > > I am new to the group. I never even thought of looking for a > support > > group because I have been so involved in dealing with Mom and her > > Alzheimer's and being her caregiver that I haven't taken such great > > care of myself for the past 7 years. I was DX about 4 years ago. > I am > > now on Methotrexate and folic acid and also have Meloxicam and > > prednisone if I need it, but I really try not to take it... > > I have good days and bad days and some very bad days when I have a > > flare-up. But, I am always tired. I have blood work done and it > > checks out ok, they say. I could sleep all day. I just feel > > exhausted. I just can't believe that this can all be from having > RA. > > I know other people that say they have it and they don't seem to be > so > > tired...I am 57....by the way... > > Do you think it's the meds? Or just the disease? > > Any ideas would be appreciated... > > Thanks, > > Diane aka Carol > > > Hi i understand what you are going through. I took care of my husband > who suffered from cancer for two years and I did everything for him > the stress can cause the pain and tiredness to intenseify greatly You > have to take the time to rest even if only for 15 minutes here and > there. I felt exhausted all the time too! I hate taken medicine but I > have found out it is better to take it when needed than to not and > the symptoms get even worse and harder to control. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Welcome to the group. I was 24 when I was diagnosed w/ RA. Beleive me, I feel drained all the time. I used to take ephedra until they banned it to help me get through the day. It takes so much out of me to take a shower. Granted, I have my good days and my bad days. The funny thing w/ me is that my RA factor is always positive, but my SED rate has been normal. I was taking Remicaide which worked wonders. Just make sure that your rheumatologist does your labs every few months. I know it's hard to hang in there when you hurt. > > > > > > Hi Everyone, > > > I am new to the group. I never even thought of looking for a > > support > > > group because I have been so involved in dealing with Mom and her > > > Alzheimer's and being her caregiver that I haven't taken such > great > > > care of myself for the past 7 years. I was DX about 4 years > ago. > > I am > > > now on Methotrexate and folic acid and also have Meloxicam and > > > prednisone if I need it, but I really try not to take it... > > > I have good days and bad days and some very bad days when I have > a > > > flare-up. But, I am always tired. I have blood work done and it > > > checks out ok, they say. I could sleep all day. I just feel > > > exhausted. I just can't believe that this can all be from having > > RA. > > > I know other people that say they have it and they don't seem to > be > > so > > > tired...I am 57....by the way... > > > Do you think it's the meds? Or just the disease? > > > Any ideas would be appreciated... > > > Thanks, > > > Diane aka Carol > > > > > Hi i understand what you are going through. I took care of my > husband > > who suffered from cancer for two years and I did everything for him > > the stress can cause the pain and tiredness to intenseify greatly > You > > have to take the time to rest even if only for 15 minutes here and > > there. I felt exhausted all the time too! I hate taken medicine but > I > > have found out it is better to take it when needed than to not and > > the symptoms get even worse and harder to control. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 I was also on Remicaide for over a year I wasn't in any pain and I could do so many things that I had been unable to do for many years it was wonderful but all good things must come to an end atleast it seems that way for me. After I gave up my job to take care of my husband I lost my medical coverage it was through my work. My husband died april 07 and I decided to try school again I just pray that this body will let me do what I need to do to survive. I hope over time the humira works as well as the Remicaide does I am also taking celebrex I have RA and osto as well I find that people don't want to hire you once they hear you have RA of course they don't come right out and say it because it is against the law to discrimiate against people with disabilities. I'd give anything to be hole again Welcome to the group. I was 24 when I was diagnosed w/ RA. Beleive me, I feel drained all the time. I used to take ephedra until they banned it to help me get through the day. It takes so much out of me to take a shower. Granted, I have my good days and my bad days. The funny thing w/ me is that my RA factor is always positive, but my SED rate has been normal. I was taking Remicaide which worked wonders. Just make sure that your rheumatologist does your labs every few months. I know it's hard to hang in there when you hurt. > > > > > > Hi Everyone, > > > I am new to the group. I never even thought of looking for a > > support > > > group because I have been so involved in dealing with Mom and her > > > Alzheimer's and being her caregiver that I haven't taken such > great > > > care of myself for the past 7 years. I was DX about 4 years > ago. > > I am > > > now on Methotrexate and folic acid and also have Meloxicam and > > > prednisone if I need it, but I really try not to take it... > > > I have good days and bad days and some very bad days when I have > a > > > flare-up. But, I am always tired. I have blood work done and it > > > checks out ok, they say. I could sleep all day. I just feel > > > exhausted. I just can't believe that this can all be from having > > RA. > > > I know other people that say they have it and they don't seem to > be > > so > > > tired...I am 57....by the way... > > > Do you think it's the meds? Or just the disease? > > > Any ideas would be appreciated... > > > Thanks, > > > Diane aka Carol > > > > > Hi i understand what you are going through. I took care of my > husband > > who suffered from cancer for two years and I did everything for him > > the stress can cause the pain and tiredness to intenseify greatly > You > > have to take the time to rest even if only for 15 minutes here and > > there. I felt exhausted all the time too! I hate taken medicine but > I > > have found out it is better to take it when needed than to not and > > the symptoms get even worse and harder to control. > > > --------------------------------- Pinpoint customers who are looking for what you sell. --------------------------------- Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos & more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Welcome to the group Carol, You find friends here that know what you are going thru. I have learned a lot of helpful information as well. Heidi M On 9/19/07, <jultep@...> wrote: > > I was also on Remicaide for over a year I wasn't in any pain and I could > do so many things that I had been unable to do for many years it was > wonderful but all good things must come to an end atleast it seems that way > for me. After I gave up my job to take care of my husband I lost my medical > coverage it was through my work. My husband died april 07 and I decided to > try school again I just pray that this body will let me do what I need to do > to survive. I hope over time the humira works as well as the Remicaide does > I am also taking celebrex I have RA and osto as well I find that people > don't want to hire you once they hear you have RA of course they don't come > right out and say it because it is against the law to discrimiate against > people with disabilities. I'd give anything to be hole again > > Welcome to the group. I was 24 when I was diagnosed w/ RA. Beleive > me, I feel drained all the time. I used to take ephedra until they > banned it to help me get through the day. It takes so much out of > me to take a shower. Granted, I have my good days and my bad days. > The funny thing w/ me is that my RA factor is always positive, but > my SED rate has been normal. I was taking Remicaide which worked > wonders. Just make sure that your rheumatologist does your labs > every few months. I know it's hard to hang in there when you hurt. > > > > > > > > > > > > Hi Everyone, > > > > I am new to the group. I never even thought of looking for a > > > support > > > > group because I have been so involved in dealing with Mom and > her > > > > Alzheimer's and being her caregiver that I haven't taken such > > great > > > > care of myself for the past 7 years. I was DX about 4 years > > ago. > > > I am > > > > now on Methotrexate and folic acid and also have Meloxicam and > > > > prednisone if I need it, but I really try not to take it... > > > > I have good days and bad days and some very bad days when I > have > > a > > > > flare-up. But, I am always tired. I have blood work done and > it > > > > checks out ok, they say. I could sleep all day. I just feel > > > > exhausted. I just can't believe that this can all be from > having > > > RA. > > > > I know other people that say they have it and they don't seem > to > > be > > > so > > > > tired...I am 57....by the way... > > > > Do you think it's the meds? Or just the disease? > > > > Any ideas would be appreciated... > > > > Thanks, > > > > Diane aka Carol > > > > > > > Hi i understand what you are going through. I took care of my > > husband > > > who suffered from cancer for two years and I did everything for > him > > > the stress can cause the pain and tiredness to intenseify > greatly > > You > > > have to take the time to rest even if only for 15 minutes here > and > > > there. I felt exhausted all the time too! I hate taken medicine > but > > I > > > have found out it is better to take it when needed than to not > and > > > the symptoms get even worse and harder to control. > > > > > > > --------------------------------- > Pinpoint customers who are looking for what you sell. > > --------------------------------- > Take the Internet to Go: Go puts the Internet in your pocket: mail, > news, photos & more. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Have you tried anything besides cortizone? I take Arava and it helps some, they also have a generic of that too. Also they have other drugs out there like enbrel, and humira but they are pretty expensive depending on your health coverage. Joy cmira003 <cmira003@...> wrote: Hello all, I'm 43 and just been diagnosed with RA and lupus...I also have tiroides problem and my doctors are screening me because it seems that I have some type of diabites and low blood pressure..what a combination. I'm a working single parent and I have a child with autism (15 years old) and a girl (14 years). I have swollen joints, like I told my doctor (remy) it hurts all over, my joints are swollen, legs, ankles, wrists and now swollen tiroides and my hips, my right hip hurts more than my left. When I had my bone scan done, it seems like a christmass tree...every joints and bones being shown...it hurts, I can handle pain, but I am getting too tired to wake up and getting dress, even drying my hair is getting painful. Does it get better...I don't want to take cortisone, because I will blow up like a ballon, but it may come to that..Any suggestions...I am on a diet right now, and I am trying to walk 30 minutes a day, but it hurts... but I am doing it still. Help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2007 Report Share Posted September 24, 2007 Not yet. I still in the stage of more blood work and x-rays. I have an appointment in 2 weeks but this is harder than I thought. I am worried about getting all puffy and the weight gain too. > Hello all, I'm 43 and just been diagnosed with RA and lupus...I also > have tiroides problem and my doctors are screening me because it seems > that I have some type of diabites and low blood pressure..what a > combination. I'm a working single parent and I have a child with > autism (15 years old) and a girl (14 years). I have swollen joints, > like I told my doctor (remy) it hurts all over, my joints are swollen, > legs, ankles, wrists and now swollen tiroides and my hips, my right > hip hurts more than my left. When I had my bone scan done, it seems > like a christmass tree...every joints and bones being shown...it > hurts, I can handle pain, but I am getting too tired to wake up and > getting dress, even drying my hair is getting painful. Does it get > better...I don't want to take cortisone, because I will blow up like a > ballon, but it may come to that..Any suggestions...I am on a diet > right now, and I am trying to walk 30 minutes a day, but it hurts... > but I am doing it still. Help. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2007 Report Share Posted October 28, 2007 Hi Cheryl welcome to the group. How far do you have to travel to go to appointments? Starting at 5 mo Louie should see good correction. What type of band/helmet does he have? Post a picture of him if you can. Do you have to self pay or was it covered by your healthcare. I've seen others post that NHS doesn't generally cover. Just wondering. We're in california. take care -christine sydney 21 mo starband grad > > Hi my name is Cheryl, i live in Liverpool in the UK im new to the group > i have a 5 month old son called Louie. Louie has a combination of > brachycephaly and plagiocephaly, louie will be havin a cranio helmet > fitted on 10th November in Lond England. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2007 Report Share Posted October 30, 2007 Welcome Cheryl! Post pics of Louie in his band when you get it!!! :-) Jen and Luli - 22 months Left tort - Right Plagio - Hanger Band Grad - CA http://www.babiesonline.com/babies/j/jens5th/ New to the group Hi my name is Cheryl, i live in Liverpool in the UK im new to the group i have a 5 month old son called Louie. Louie has a combination of brachycephaly and plagiocephaly, louie will be havin a cranio helmet fitted on 10th November in Lond England. Email and AIM finally together. You've gotta check out free AOL Mail! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hi JH Welcome to the group. I tried Glucosimine but my Dr told me it could take up to several months to make a difference. I tried it for 3-4 months but I couldn't tell a difference. I take Methotrexate and Enbrel for the RA and I can tell the difference in my knees but no help with the hands. You will find wealth of information here as well as a group of understanding people who know what you are going through. Heidi M On 1/4/08, J. H. <flowers4me7@...> wrote: > > Just recently diagnosed, am looking for alternative help. > I have been on Specific Carb diet for the past 3 years. I noticed that > beef > and pork make my symptoms worse. Wanted to know if taking glusosimine and > chrondition (spelling might be off) help with time or is it like a quick > fix? Diet is a biggie, am not able to take Nsaids and have to be so > careful > with other drugs. > > -- > JH > Celiac, > Specific Carb Diet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hi Tanja and welcome. There are many of us who are hypothyroid as well as having RA. From your symptoms and it sounds like you take levothyroxine, are you sure you aren't hypothyroid rather than hyperthyroid? Is your thyroid under good control now? Kate G is the thyroid guru around here, I defer to her, but I was curious. Defnitely get to a good rheumatologist soon. In the mean time, see a good internist who can do some bloodwork and manage your pain and discomfort. If you have more than one rheum in your area, you might want to make multiple appointments, in case you don't like the first one. That way you won't have to go through another waiting period before seeing a doc. Welcome and feel better, Kate F [ ] New to the group Hi! Im new to this group and seeking some answers that maybe somebody can help me out with. I was in a car accident back in 2003, Since then I`ve had problems with my neck, back and hips and legs, Over time I was diagnost with hyperthyroidism. And hernated dicks in my neck and back. I was put on thyroid pills which made my thyroid lab work better but I didnt feel better.So I went to my family doctor that did more blood work and called me saying, Im on border line of RA and lupus. I continuasly have pain in my right back led and right arm in between my shoulder and elbow Not to mention the rest of my body that just aches. Im alway cold (fingers and toes) and feel like I run a fever on and off. IS this all normal with this disease? Or does any body else think it could be something different? Im waiting for a refferal to go to a Rheumatologist, Do they deal with Lupus and Ra? ASnybody just want to talk Im here And Hope you all are doing well. Could use some friends that understand. Thanks your friend Tanja. ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Tanja, What thyroid medication are you taking? You are not a lab number. If you are still having hyper symptoms, then that needs to be addressed. If you are going more hypo that needs to be addressed. The line of my labs look better, but I don't feel better..is the key to what with thyroid treatment today. Hyperthyroid and Hypothyroid have muscle related issues. Cold hand goes with hypothyroidism. Understand that your thyroid controls you metabolically, so it regulates most everything in your body. When it is struggling with regulating your temperature you can feel cold hands and feverish body. I'm not telling you to not go to the Rhuemy, but you need to get the thyroid balance too. You might read up on http://www.thyroid-info.com Kate G Hashi's AS At 12:49 PM 1/29/2008, tanja_heimbach wrote: > Hi! Im new to this group and seeking some answers that maybe somebody >can help me out with. I was in a car accident back in 2003, Since then >I`ve had problems with my neck, back and hips and legs, Over time I was >diagnost with hyperthyroidism. And hernated dicks in my neck and back. >I was put on thyroid pills which made my thyroid lab work better but I >didnt feel better.So I went to my family doctor that did more blood >work and called me saying, Im on border line of RA and lupus. I >continuasly have pain in my right back led and right arm in between my >shoulder and elbow Not to mention the rest of my body that just aches. >Im alway cold (fingers and toes) and feel like I run a fever on and >off. IS this all normal with this disease? Or does any body else think >it could be something different? Im waiting for a refferal to go to a >Rheumatologist,Do they deal with Lupus and Ra? ASnybody just want to >talk Im here And Hope you all are doing well. Could use some friends >that understand. Thanks your friend Tanja. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2008 Report Share Posted February 5, 2008 Welcome! My dd also fought the stretches. You might wanna take her to see her reg. ped and/or get a referal to a PT and get xrays or ct's of her neck - while rare - torticollis can be caused by abnormalities in the neck and/or spine and doing the stretches can actually cause damage. Also, if you want to know where she stands now with real # - you can take your dd to a band provider - I know Cranial Tech does it for free - and get an evaluation where they take measurments to determine the degree of plagio. That way in a few months when you wnat to decide what to do - you can go back and get a new eval and have something to comapre it to. Hope that helps! Jen and Luli - 26 months Left tort - Right Plagio - Hanger Band Grad - CA http://www.babiesonline.com/babies/j/jens5th/ new to the group hello. my 3.5 month old daughter was just diagnoced with mod to sever plagiocephaly with a 11mm diff in asymatry with bullging forehead, eye and ear on the right side. she also has some mild torticollis. i mentiond her head shape to the nurse at early intervention and she sent the physical therapist out to see us he gave me some excersises to do for her neck and some repo techniques. he will come back in 2 months and remeasure her to see if we have made any changes in the asymetry. if it has not changed she will need a helmet. do you think i should take her to her normal doc also? she is also being very fussy when we do her stretches and she fights it, is this normal? thank you More new features than ever. Check out the new AOL Mail! Quote Link to comment Share on other sites More sharing options...
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