Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Hi... I have also just recently started reading this list. I've been working with rife-type treatments for about a year, having had Lyme disease for over 20 years, with serious disability misdiagnosed as MS. Long, complicated story, but anyway, feeling much more encouraged lately. Only found Healing Lyme this past December, gradually starting onto various herbs. Did a year of cats claw and nutramedix samento, about 2 1/2 years ago -- no dramatic recovery, so I didn't think it was helping that much and stopped, but in retrospect, with more recent experiences, I think that it was helping. Anyway, delighted to have found such a thorough collection of herbal recommendations, so carefully researched, to go into more thoroughly. Bottom line, I think that the rife work has helped things not be worse than they could be, but I've had to go very slowly because of intense reactions, and have also not experienced grand recuperation. I'm continuing with that work, along with the herbs. I love your cocoa recipe! I've been puzzling over alternatives to so many capsules. Thanks so much for sharing it. Shemaya [ ] New here > Hello, I just joined the group and wanted to make an introduction. > My husband has lyme disease, we didn't catch it until 2 years after > the fact when we finally figured out why his joints would swell up > for seemingly no reason at all. We were immediately turned off by > the lyme specialists who told us to take antibiotics and we found > two books: Buhner's and a Lyme/Rife book. We haven't done any of > the Rife machine stuff, but are fully committed to the herbs in > Buhner's book, and just worked up to the maximum dosage a week ago. > Because of expense, we buy most of the herbs except for andrographis > in powder form from Rain-Tree and 1st Chinese Herbals, and then mix > them with some Camu-Camu (vitamin C source), Stevia, and unsweetened > cocoa powder to make a mix that he can scoop out and put in a glass > of milk, we call it his " magic cocoa mix. " It doesn't taste great, > but he likes it better than taking all of those pills. > > He has a few flare ups since we started on the herbs, but instead of > lasting 2-3 weeks, they are lasting between a few hours and a few > days. He is very tire much of the time, but we attribute that to > fighting off the lyme. > > I do not have any lyme symptoms, and we have heard mixed opinions on > whether or not he can give it to me. But I take astragalus and > eluthero, along with other immunity boosters and vitamins just in > case. > > I have not read through many past messages, so forgive me If I ask > repeated questions, but here they are: > 1)How do you know when you have beaten lyme disease? > 2)Do decreasing symptoms mean the protocol is working or that his > body is not fighting as much? > 3)Has anyone done rife or " zappers " in conjuction with the herbs? > > Thank you! > > > > > > > The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now > available through Amazon and Booksurge Bookstores. Please visit the > official website at http://www.confrontinglyme.com for more information. > > - Join or create groups, clubs, forums & amp; communities. > Links > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hi Shemaya, Welcome to the list. Glad you found us. To have this disease for 20 years! I honor your determination to heal yourself. Glad you feel encouraged, and hope that you will find a total recovery. Just to let you know, if you are reading at the group site, on the left there are links which provide more information. best, ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 Hi Ellen, Thanks for the welcome! I've been picking up lots of great information reading what everybody has been writing, and from the group site, along with planet thrive, which I found by reading here. Thank you so much to everybody for making all this information available. Yes, it's been long! But got inexplicably better for one span of about six years, more or less. Which was outstanding both for having some fun and for knowing that it was possible. This time around, as of the last 3 1/2 years, it's been all about knees, along with previous issues coming back more strongly again. But the whole business is a lot more approachable, having an understanding of what's going on. So here's hoping for herbs that work! Antibiotics are out of the question, for various reasons, so I am delighted to find the range of herbs to apply to the situation, tailored so specifically. I think it'll take another two months or so to get up to the full dose of the core protocol, but I'm used to trying things that take a year to determine if they're working or not, so I'm trying to stay connected to that sense of patience! It would be a real treat if things started improving noticeably. Thanks again, Shemaya [ ] Re: New here > Hi Shemaya, > Welcome to the list. > Glad you found us. > > To have this disease for 20 years! I honor your determination to heal > yourself. Glad you feel encouraged, and hope that you will find a > total recovery. > > Just to let you know, if you are reading at the group site, on the > left there are links which provide more information. > > best, > ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2007 Report Share Posted February 25, 2007 Shemaya, My problem was in my knee too. (is, too a much lesser extent). Is your knee problem 'lyme arthritis'? That's what my MD called mine. Not that labels mean a lot. He said that he couldn't tell if my knee problem was: permanent damage from the Lyme, or the presence of Lyme, or a result of my immune system response to Lyme. I don't believe anything is necessarily permanent. But I have decided for the moment to live with it, as I don't have pain except for climbing steps. I'm even thinking of trying to jog again! Wanted to mention teasel to you. Several on here have mentioned it for joint pain (among other things I think), in case that is your situation. When I get ready to try to resolve my situation that is what I'm going to try first. If you search the archives you can find info. let us know how you do. best, ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2007 Report Share Posted February 27, 2007 selmanaka, Thanks for the informative reply: you mentioned cleansers--he is taking red root, just 3 capsules a day, we didn't find the stuff listed in the book, so we got it capsulized. Since my husband is taking large quantities of herbs right now, it does seem he is having a hard time--fatigue, bright yellow or brown urine, and some impotence. do you recommend taking the other cleansers you mentioned with red root, or should he take more red root? Another question, I've heard many of those substances are chelators and should not be taken if you have amalgam fillings (he has 6, we are saving up the money to get them removed)--should he take them nonetheless? Or should we back down on the core protocol herbs-- unless that would not make the program as effective??? Sorry lots of questions! As for me, I am taking 3 410mg astragalus pills/day, plus about 500mg eleuthero. And yes, we have bee pollen--we just sort of take a spoonfull a day or so. We also have a grazing/organic dairy, so we drink a lot of raw milk, which is full of vitamins and minerals. I know this is a controversal thing, as lyme can be transmitted through milk, but we have also read that cows can develop antibodies against the lyme and can cure themselves of it, possibly curing those who drink their milk?? Who knows. But if anyone has ever tried " hyper-immune milk " I'd love to hear about it. Thanks > > Hi, welcome to the group! > > It seems you're husband and you are doing quite well already! > > Thanks for the idea about the cocoa drink. Sounds not that bad at > all. I read wonderful things about stevia too. Does it taste good? > > How much eleuthero and astragalus do you take a day? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2007 Report Share Posted April 1, 2007 Kathy, Normal blood work combined with tendonitis , joint pain and muscle pain in many places may well be polymyalgia rheumatica (PMR), so go to www.google.com and research that topic. One of the tell-tale signs of PMR is that it comes on quite suddenly. A diagnostic is the immediate removal of all pain in response to small dosages of Prednisone, such as 10 mg per day. The good news about PMR is that it can be cured in about 1 year with decreasing doses of Prednisone. Stay on 10 mg of Prednisone for a couple of months, then go down 1 mg every three weeks. When you are down to 3 mg, go down 1/2 mg every 3 weeks until you are down to 0 mg. I would see a rheumatologist first and experiment with Prednisone under that doctor's guidance. I would only see a neurologist once tendon, muscle or joint inflammation have been ruled out. In the meantime, put yourself on an anti inflammatory diet. Start by avoiding all beef, citrus and processed foods. Eat salmon, rice and vegetables. Use olive oil. I have PMR, but was misdiagnosed over 5 years. Sincerely, Harald At 01:25 PM 4/1/2007, you wrote: >Hi, I just joined. not sure if this is the list I need yet. I have >muscle and tendon pain, maybe ligaments too, not sure. I have seen the >family Dr and the orthopedist and a nuerologist. I have 2 apts with >nuerologist this week for nerve tests and I see a rhuematologist next >week. so far all blood work is normal. The orthoped says i have >tendonitis in my shoulder, but ive also had it in my elbows, ankles and >hands. Now my right leg hurts too and my left shoulder is starting >too. My hands are very painful very often. I am active and have a >small farm, animals to care for, and alot of gardening. I also drive a >school bus, so the pains dont help. currently only taking alieve. I >was doing physical therapy for the shoulder, he said I have impingement >of the tendons. the PT helped me start using my arm better but didnt >not resolve the pain. So I get the nerve tests tommorrow , they said >maybe an MRI after that. nuerologist seemed to think my arms were >weak.. anyway, not sure where to go, who to ask, worry about whats >going on. I want to get to work on things and just cant do as much as >I want to. Thansk for any comments. Kathy SD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2007 Report Share Posted April 3, 2007 Hi Kathy; I have SD also.Believe me Minocin works wonders.I had to find out the hard way that I am Celiac as are many people with chronic disease.That cleared after 18 months on a no grains diet .Had to cut out anything " cow " and all food with vitamin D.Basically I became 90 vegetarian and the only meat I coud eat was chicken.Had to cut out all food with vitamin D also as my 25 to 1.25 ratio was 3 times too high and was causing osteoporosis.It was tough to change the way I ate byt with AP I am in remission.Had to use minocin,clindamycin,diflucan and zithromax but all was well within a year of making changes. Lynne SD Kathy wrote: > Hi, I just joined. not sure if this is the list I need yet. I have > muscle and tendon pain, maybe ligaments too, not sure. I have seen the > family Dr and the orthopedist and a nuerologist. I have 2 apts with > nuerologist this week for nerve tests and I see a rhuematologist next > week. so far all blood work is normal. The orthoped says i have > tendonitis in my shoulder, but ive also had it in my elbows, ankles and > hands. Now my right leg hurts too and my left shoulder is starting > too. My hands are very painful very often. I am active and have a > small farm, animals to care for, and alot of gardening. I also drive a > school bus, so the pains dont help. currently only taking alieve. I > was doing physical therapy for the shoulder, he said I have impingement > of the tendons. the PT helped me start using my arm better but didnt > not resolve the pain. So I get the nerve tests tommorrow , they said > maybe an MRI after that. nuerologist seemed to think my arms were > weak.. anyway, not sure where to go, who to ask, worry about whats > going on. I want to get to work on things and just cant do as much as > I want to. Thansk for any comments. Kathy SD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Thanks for the welcome and all the info. We just met again today with the infectious disease specialist and he does not believe that the CMV is related to the arthritis. Lianna is not on any medication at this point. She also has elevated liver enzyme and a small amount of fluid around her liver and everyone seems to be afraid to give her any kind of med. We are currently trying Borage oil supplements to see if they make any difference. Has anyone else with PsA experienced liver involvement? The rheumy said this was uncommon but not unheard of. Thanks again! Jo Anne, mom to Lianna(4)PsA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Welcome to the group. Where did you move from and where do you live now? Just so people on here can help you out with some services. Amy Donna <flower97_02@...> wrote: Hello, I just found this group tonight and as my almost 4 yr. old is speech delayed, thought it might be a good idea to join. I am a mother to 3 wonderful kids, and it is my middle child who is speech delayed. We are not sure what caused him to speak so late (didn't start to talk until almost 3!!)We have recently moved and are getting him re- evaluated on May 7th to get him speech services again. --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 - my baby girl is 5.5 mo and was also just diagnosed - ask about torticollis also - a tilting of the head and favoring one side ( I don't know much - just learning) - we are seeing a pt for this. Also - ask about helmets - everyone is telling us to do it. Good luck and God Bless, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Hi, I would definitely start the process sooner than later given your son's age. Is the first time that the plagio was noticed was at his 9 month visit? Or were you given the " it will round out? " It seems interesting that there would be nothing until 9 months as the bones are closer to the shape the head will be as they get older (did I say that right?). I think you can still see great correction, it just may take a little longer given your son's age. I would probably pay for the band upfront and then appeal your insurance (as most deny it the first go around). Good luck. 9.5 month old son, DOC graduate! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 One more thing, you can go to CT for a free eval. We were very pleased with the DOC band. Is PT for torticolis? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 It's a CranialTech clinic that they are sending us to, so the free eval is good to know about.6mo is when I first noticed it. Well, maybe it was earlier, but it was the whole "it will round itself out" thing. My 2 1/2 yo had a flat spot for a short time and hers did round out so I didn't think anything of it. A 9mo it became more pronounced, but since he had just begun walking, we decided to give it until the next visit. Now it looks pretty bad and he's popping his jaw. The jaw popping is what triggered her to write the script.  It's a lot to take in right now, and I'm trying to read up everything I can. I'm calling my insurance (UHC) now and see what I need to do to get this covered. I just hope it's not too late.On Apr 17, 2007, at 12:35 PM, lka_236 wrote:One more thing, you can go to CT for a free eval. We were very pleased with the DOC band. Is PT for torticolis? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2007 Report Share Posted April 17, 2007 Welcome ! This is a great group of parents who can answer alot of the questions you have! At 1 year old you will want to act as fat as possible becuase IF treatment is needed the window for correction closes when the sutures are fused in the skull. I'm not sure about "popping" in the jaw - but have you been to a cranio-facial specialist? They maybe able to help with the jaw issues. Does your son have Torticollis? Is that what the PT is for? If there is a Cranial Technologies near you they can do a free consult to see if your son would benefit from a band - maybe even sooner that 5/4. HTH!!! Jen and Luli (16mo) Left Tort - Right Plagio - Hanger Band Grad - CA tallulah jayne http://www.babiesonline.com/babies/j/jens5th/ New here Hi, My name is . I just got back from my son's one year appointment and our ped-doc said he has plagiocephaly and referred us to a PT. I feel completely lost and have no idea what to expect or where to start, so here I am. Micah started walking at 8 months and although we noticed a slight problem at his 9mo visit, my doctor felt that it would even out now that he was so much more mobile. He has always been a belly baby, but prefers to sleep on one side. Anyway, now it's a very noticeable problem and he;s started popping his jaw. Anyway, we have an appointment on 5/4 for the measurements and I guess we go from there. Thanks for listening, 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 April 17, 2007 Report Share Posted April 17, 2007 Harald, I checked out a PMR site which describes it as only affecting adults over the age of 50. I am looking into this because my daughter (MS since '91 and SD since 2000) is experiencing severe pain, mostly during attempts to move it, in one of her legs. An MRI, CAT scan and x-rays show no signs of a fracture or break, although she did fracture the other leg (tibia) when she fell forward out of her wheel chair. She also has complained of pains in her elbow and upper arm. She is only 36 years old. Ellen Re: rheumatic new here Kathy, Normal blood work combined with tendonitis , joint pain and muscle pain in many places may well be polymyalgia rheumatica (PMR), so go to www.google.com and research that topic. One of the tell-tale signs of PMR is that it comes on quite suddenly. A diagnostic is the immediate removal of all pain in response to small dosages of Prednisone, such as 10 mg per day. The good news about PMR is that it can be cured in about 1 year with decreasing doses of Prednisone. Stay on 10 mg of Prednisone for a couple of months, then go down 1 mg every three weeks. When you are down to 3 mg, go down 1/2 mg every 3 weeks until you are down to 0 mg. I would see a rheumatologist first and experiment with Prednisone under that doctor's guidance. I would only see a neurologist once tendon, muscle or joint inflammation have been ruled out. In the meantime, put yourself on an anti inflammatory diet. Start by avoiding all beef, citrus and processed foods. Eat salmon, rice and vegetables. Use olive oil. I have PMR, but was misdiagnosed over 5 years. Sincerely, Harald At 01:25 PM 4/1/2007, you wrote: >Hi, I just joined. not sure if this is the list I need yet. I have >muscle and tendon pain, maybe ligaments too, not sure. I have seen the >family Dr and the orthopedist and a nuerologist. I have 2 apts with >nuerologist this week for nerve tests and I see a rhuematologist next >week. so far all blood work is normal. The orthoped says i have >tendonitis in my shoulder, but ive also had it in my elbows, ankles and >hands. Now my right leg hurts too and my left shoulder is starting >too. My hands are very painful very often. I am active and have a >small farm, animals to care for, and alot of gardening. I also drive a >school bus, so the pains dont help. currently only taking alieve. I >was doing physical therapy for the shoulder, he said I have impingement >of the tendons. the PT helped me start using my arm better but didnt >not resolve the pain. So I get the nerve tests tommorrow , they said >maybe an MRI after that. nuerologist seemed to think my arms were >weak.. anyway, not sure where to go, who to ask, worry about whats >going on. I want to get to work on things and just cant do as much as >I want to. Thansk for any comments. Kathy SD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2007 Report Share Posted April 19, 2007 Welcome ! You will find that this is a great group of parents who can really help w/ all the plagio concerns and alot here are dealing with or have dealt with appealing ins. Look thru old messages about ins. appeal and also in our files section you will find alot of great resources. :-) Jen and Luli (16mo) Left Tort - Right Plagio - Hanger Band Grad - CA tallulah jayne http://www.babiesonline.com/babies/j/jens5th/ new here First let me say thanks for this site. My name is , mom to 3 kiddos. My youngest Jack was diagnosed with positional plagiocephaly due to torticollis at 5 months. Dh and I went ahead and had him fitted for a helmet. I found this site when I was researching ways to appeal insurance companys. Dh and I made all the right phone calls before we started the process only to hear when I went to schedule Jacks fit check that the insurance company is denying the claim. So far we havent seen a denial letter, and they still says its under review. So we shall see what happens. Again thanks for having this site, it will make this whole process alot easier to deal with. 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 April 25, 2007 Report Share Posted April 25, 2007 Thank you so much, Bee. I'm having a hard time with this diet because before, I would eat veggies maybe once a week (partly because they bother my stomach and partly because I'm not a veggie fan). I'm not a huge meat eater either, and now that I can basically eat only meat and veggies, I'm having a really hard time. Especially finding something for breakfast. I was eating an almost totally carb diet before (hence the reason I'm 40 pounds overweight!) But I had almost all of the symptoms of candidiasis so I knew I had to try this. My Crohn's was in remission before this, but I was exhausted and depressed and not functioning. My mind not only wanders, it sometimes leaves completely. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 ==>Hi . Welcome to our group. > Hi! I am new here. I just stared this diet 2 days ago. I was feeling great up until this afternoon, when I had a Crohn's attack. I think all the veggies are making me flare up. (I hadn't had any Crohn's pain in months before this.) Does anyone know anything about modifiying this diet for Crohn's Disease? ==>You need to go easy on changing your diet when you have Crohn's disease. Make changes very very gradually. Proteins and good saturated fats are most important and they are the very easiest to digest compared to any carbs (all foods not classified as protein or fat), i.e. veggies. All veggies should be cooked and none should be eaten raw when you have Crohn's. You should also eat sauerkraut with every meal, about 1-2 tbls. to aid digestion. Print out the article on my website: Curing Candida, How to Get Started. ==>However when you follow the natural healing route like this program there will be flare ups of previous episodes of Crohn's which is part of the healing process as well. To understand how this occurs and why read my main article sent to you when you joined " How to Successfully Overcome Candida " , particularly towards the end where it discusses natural healing, Hering's Law of Cures, etc. You will experience re- tracing symptoms as you heal naturally too. ==>We here to help and support you! Keep in touch. The best to you, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 i am new to all this too. when u find out what all this is in english please pass it on to me. i am trying to find out what i can for my son, whom is not in the position to find the info on his own. bless u, n good luck to u hotsoz1 <hotsaucey13@...> wrote: had blood work done the other day and this is the test that was done: hepatitis c virus rna, quant. Result is 546268 and range is <200 what does this mean? what kind of result is that? the alpha fetoprotein tumor marker result was 69.3 and range is <5.5 again what is this?? thanks for your help --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2007 Report Share Posted April 25, 2007 i am new to all this too. when u find out what all this is in english please pass it on to me. i am trying to find out what i can for my son, whom is not in the position to find the info on his own. bless u, n good luck to u hotsoz1 <hotsaucey13@...> wrote: had blood work done the other day and this is the test that was done: hepatitis c virus rna, quant. Result is 546268 and range is <200 what does this mean? what kind of result is that? the alpha fetoprotein tumor marker result was 69.3 and range is <5.5 again what is this?? thanks for your help --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2007 Report Share Posted April 29, 2007 Hi, you are lucky you learned all this when your son is still so young. you can really do a lot. first it sounds like your son has torticollis (tort) and this means the neck muscle is shorter/weaker on one side of his neck so he'll favor one side and won't have a very good range of motion (ROM). often you'll see the baby's head is always tilted the same way with tort. this can cause plagio since the baby will tend to rest on the same side of his head all the time. You will probably need to see a physcal therapist for this, who will teach you stretches to do at home with Riley. PT for tort is really important since you'll need to strengthen and stretch the weak side. Also check the files section of this group for tips on repositioning (repo). by using repo you can encourage your son to spend less time on the flat side of his head, and more on the prominent side. Starting aggressive repo at 10 weeks old may be enough to fix his head shape without a helmet. there is no guarantee of completely resolving the problem with repo, but it is definitely worth trying and monitoring your progress. i bet you'll see a lot of progress. photos of your son's head every week or two are a good way to see if it is getting better. (top and side view that show the asymmetry the worst). I don't know anything about helmets in australia, but definitely you'll get info on repo and stretches for tort from this group. take care. -christine sydney 16 mo starband grad. > > Hi there, > I have a 10 week old boy Riley and went to the specialist for a > hernia issue and he told me he was not concerned about that at all > and started looking at his head. As l had a bad delivery and he came > out upside down my husband and l thought his head was shaped by that > and that it would go back to the normal shape that a head is, but the > pedo told me no he has plagio, this was only 4 days ago and l have > been searching the net to find out exactly what it is and am just > getting more bomparded with other stuff. He measured his head and > told me about the helmet but then brushed it off as is expensive (his > words) but since then reading more into plagio it seems that the > earlier you get it treated the better. I am in Central QLD, > Australia, yet most of the sites seem to be american and l cant seem > to find out much about it here that is not confusing me more, if > there is anyone that can direct me to some good sites it would be > very appreciated. When l left the pedo l was in shock and felt numb > and guilty for not thinking more of his head shape he starts crying > when we move his head as it is always to one side and when we attempt > to hold his head the other way he wont stop crying, so we leave it > be. Is this painful for them? Any help or advise would be great. > Cofused and concerned mum > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 They don't like going to the direction of the tightness (hince your son's crying). I don't think its hurting him though. The muscle just has to be stretched (which babies don't like). Like said, I'd check the repositioning folder. As far as locations in Austraila, I am not sure. Hopefully, some one else is able to help. lisa PS: I can't stress TUMMY time enough while your baby is awake and you are around to supervise. Tummy time will strengthen your baby's neck muscles. Limit time on your baby's back especially the flat side (i.e use a front carrier, in a few months when your baby has better head control use a bumbo seat, exersaucer, only use the carseat for travel). Alternate which way you have your baby face when you put him on his back. > > Hi there, > I have a 10 week old boy Riley and went to the specialist for a > hernia issue and he told me he was not concerned about that at all > and started looking at his head. As l had a bad delivery and he came > out upside down my husband and l thought his head was shaped by that > and that it would go back to the normal shape that a head is, but the > pedo told me no he has plagio, this was only 4 days ago and l have > been searching the net to find out exactly what it is and am just > getting more bomparded with other stuff. He measured his head and > told me about the helmet but then brushed it off as is expensive (his > words) but since then reading more into plagio it seems that the > earlier you get it treated the better. I am in Central QLD, > Australia, yet most of the sites seem to be american and l cant seem > to find out much about it here that is not confusing me more, if > there is anyone that can direct me to some good sites it would be > very appreciated. When l left the pedo l was in shock and felt numb > and guilty for not thinking more of his head shape he starts crying > when we move his head as it is always to one side and when we attempt > to hold his head the other way he wont stop crying, so we leave it > be. Is this painful for them? Any help or advise would be great. > Cofused and concerned mum > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2007 Report Share Posted April 30, 2007 Welcome to the board, you sound exactly like most, if not all moms once we find out what is going on. My son has plagio, was measuered at moderate to severe at 12 mm (although even that can change from dr. to dr. depending on who I'm talking to at the moment). He was never in pain when we tried to repo him, so you might want to check into whether or not he has tort, some of the mom's on this board might be able to advise you on this. If it's more of a comfort thing and that is why he's upset when you try and turn his head. Try pinning something to his back under the flat spot. I used a rolled up towel, and pinned it to his jammies between his spine and the shoulder blade under his flat spot, this way he HAD to lay on the non-flat side when he slept. I hope this helps. BTW, my cranial facial dr. worked in Australia for years and mentioned it is common practice to not fix the plagio there. So it may be hard to find information on correction. I have already put in a call to his office to see if he will call back regarding any info I could pass on. Although he is usually really busy and I've already had my last call with him so I honestly don't expect to hear back from him. But it was worth a try. Good luck to you, and please keep in touch, it's a lot to process when you first start, but the mom's and dad's on this board are your BEST asset, we've been thru it all and seen it all, so we know how to help. Or at the very least, know how to listen and understand. Mother to , 9 mths, plagio, Starbanded 1/11/07 "In the depths of winter, I finally found there was in me an invincible summer." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Hello, I would like to thank the people that have sent replies and alot of usefull information to me about repo, it is very difficult in Australia to get information as it seems that most people dont even know what plagio or tort is. We have our specialist appointment on the 21st June and l am now armed with many questions. Thanks again - Central QLD - Australia Messenger NEW - crystal clear PC to PC calling worldwide with voicemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 - I just remembered that there was post about an Austrailian or New Zealand girl who had surgery for Plagio - they posted the link to the article. I'm not at my normal computer so I don't have the link but look thru old messages for the artcle - I wanna saw it was in the last month. Anyway - it might give you some good contacts - or if nothing else - a marker for what you don;t want to happen to your baby and that is why you want treatment now. Hope that helps!!! Jen and Luli (17mo) Left Tort - Right Plagio - Hanger Band Grad - CA tallulah jayne http://www.babiesonline.com/babies/j/jens5th/ Re: New Here Hello, I would like to thank the people that have sent replies and alot of usefull information to me about repo, it is very difficult in Australia to get information as it seems that most people dont even know what plagio or tort is. We have our specialist appointment on the 21st June and l am now armed with many questions. Thanks again - Central QLD - Australia Messenger NEW - crystal clear PC to PC calling worldwide with voicemail 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...
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