Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Hi, My son was 3 when first sypmtoms happened and he quickly became an expert on doctors and bloodwork. I was honest, within 4 year old reasoning. It's a bump in the road of life and we will work together as a family to pull through. My biggest fear was that he would " milk it " . As I'm sure many will attest, we all had that fear at one time, but most kids will not fake any of this stuff if they are sick. I have heard of siblings faking symptoms, but not the JRA kids. I hope this helps. Stacia and Hunter 9 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Totally agree with you that they will not fake it. As a matter of fact, we had a discussion here awhile back about the " I'm OK " syndrome. The kids just want to be " normal " and so often will deny the pain they feel. Or they become so used to it, they think it is normal to have the pain and stiffness. I still see it with Chris. He is sometimes stiff or sore and often tired, but it is never his arthritis - it's always something else. Michele Re: advice Hi, My son was 3 when first sypmtoms happened and he quickly became an expert on doctors and bloodwork. I was honest, within 4 year old reasoning. It's a bump in the road of life and we will work together as a family to pull through. My biggest fear was that he would " milk it " . As I'm sure many will attest, we all had that fear at one time, but most kids will not fake any of this stuff if they are sick. I have heard of siblings faking symptoms, but not the JRA kids. I hope this helps. Stacia and Hunter 9 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2005 Report Share Posted May 13, 2005 ---wish you well with the acid however have you ever had a detox an internal cleansing colonic enemas , 3 day apple diets, massage ,consider these also p In candidiasis , moonone2000@y... wrote: > Hello again- > > Now that I have introduced myself, I was wondering if anyone can give > me advice about caprylic acid. This is the first remedy I am trying in > this battle. I really want to get this fungus out of my belly if in > fact that's what it is, and do it without prescriptions. Should I chew > the capsules, take whole, a little of both? How much is appropriate? > Are there any bad effects? Can you take too much? > > Has anyone noticed burning/itching in the inner ears when drinking beer > or wine? Has anyone heard of this before? This is another peculiar > symptom I forgot to mention in my earlier post. Is this a candidiasis > symptom? > > Any advice is appreciated. I have read all the books at the library, > and visited every website I can find. The information I have gathered > there led me to believe in this against my doctor's advice to the > contrary. Now I would really like to hear from people with first hand > experience. Thank you. > > -Moon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 Jessy, Is this your orthopedist who is injecting or giving you these options? If not, I would advice going to see an orthopedist. Replacing the elbow joint is very invasive. Depending on the severity of the inflamation of the synovium, It is possible to " scope " and elbow and shave away at the synovium just like they do with knees and ankles. I would find an orthopedist who specializes in arthroscopies and see where that gets you. Both the joint replacement and the removal of some of the synovium through a large incision are painful. Scopes are not as painful....Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2005 Report Share Posted September 16, 2005 Jessy, Is this your orthopedist who is injecting or giving you these options? If not, I would advice going to see an orthopedist. Replacing the elbow joint is very invasive. Depending on the severity of the inflamation of the synovium, It is possible to " scope " and elbow and shave away at the synovium just like they do with knees and ankles. I would find an orthopedist who specializes in arthroscopies and see where that gets you. Both the joint replacement and the removal of some of the synovium through a large incision are painful. Scopes are not as painful....Marina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi, , The fact that you are symptom free is definetely a good news but your problem is in hiding and it's waiting for its time to hit. I've been in the same situation with the symptoms and it took me time to realize that even if the problem is not so obviously seen it is here. Read Dr. 's books " Prevention of alll Cancers " and The Cure from All Advanced Cancers " . Read them many times, don't listen to skeptics, just do it, help yourself. The information from them saved me and others. I saw these people.It takes consistency and 100 per cent commitment. You have to follow the protocols in one of the books or make a combination. It is a fact that you can stop your cancer with Black walnut tincture, wormwood and clove. Please keep in your mind that you MUST be on this program not 3 weeks but as long as you need, maybe a year, maybe six months. The dose 2 teaspoons is not for advanced patients. I took 2oz for 2 weeks +10 wormwoods twice a day and 10 cloves once a day , now I take 1oz of tincture and 10 wormwoods and 10 cloves once a day. This is that stops the cancer from development. Don't be afraid to play with the dose. I know people who were taking 4oz, being very very sick, and it saved them. Unfortunately you don't see it in the book. I talked to Dr. this June during the conference in Chicago and she said " you take it as long as you need it. It doesn't matter how long, maybe more than a year " When I started doing this correctly the CA marker dropped immediately from 95 to 70 without any medication (Arimidex, Aromasin). And more, read the cases in the books. Use the time when you are strong to recover but remember once you were targeted and hit by cancer you will never be untargeted. It doesn't mean that you don't have normal life but you have to be double careful in choosing what you eat, drink and use for tooth brushing. I was looking for good water everywhere because water is crucial. If it is bad (has bad chlorine) the cancer will hit you again. Be careful with oils. Until you are free from parasites all oils, onions, oats feed them and stop your body from recovery. Read the " Prevention " book over and over. As to other protocols, many of them were developed 20 and more years ago and worked well then but think what happened with the first antibiotics when the they stopped working, new ones were developed. Same with many protocols. Once Essiac was used in the 50's last century with excellent results but it can't work same way today. People use it together with other things. Good luck. If you have questions feel free to ask. Nina Kendrick wrote: I've had two episodes of Ovarian cancer -- dx in 01, full hysterectomy, 3C (with mets to my aortic lymph nodes), 12 chemos. Remission for 2+ years, reoccurrence in spring 04, tumor on my pancreas, caused my ducts to my liver to close, stents inserted, took 5 rounds of chemo and then quit. I've been off chemo now for almost a year. My CA-125 has risen from 15 to 84, but i'm symptom free. Of course, I'm very worried that the number keeps going up and am in a period of intense questioning about what I might do next...................... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi Nina and , It is a rare thing online to find accurate information regarding Dr. . But I agree with everything Nina has said, she's done a splendid job of summarizing Dr. 's program. Bravo, Nina. Dr. 's program is without question the most comprehensive cancer program in existence. It is thanks to her that I have lived long enough to hear my surgeon tell my husband that all other patients with cancers like mine that she treated 6 years ago when she treated me are now dead...and she said that over 2 years ago. And it is thanks to Dr. 's program that my very conventional primary care physician told my husband 2 months ago that his wife is a miracle. The first 4 alternative treatments that I tried did not help me...Budwig's program was one of those. > I've had two episodes of Ovarian cancer -- dx in 01, full hysterectomy, 3C (with mets to my aortic lymph nodes), 12 chemos. Remission for 2+ years, reoccurrence in spring 04, tumor on my pancreas, caused my ducts to my liver to close, stents inserted, took 5 rounds of chemo and then quit. > I've been off chemo now for almost a year. My CA-125 has risen from 15 to 84, but i'm symptom free. Of course, I'm very worried that the number keeps going up and am in a period of intense questioning about what I might do next...................... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Anxious Mommy, Try taking a picture of her head from the chin up. This usually does a good job of showing the facial asymmetry as well as forehead bossing. Neither of my banded kid's plagio was strikingly visible from the top. It was better viewed from below. Are you near a Cranial Tech? You can get a free evaluation. They are very honest. We've had members who have been told a band wasn't warranted. Maybe hearing it from the experts will put your mind at ease. How many babies has your ped or neuro banded? It is not uncommon to hear of doctors being ignorant about bands. Make sure you see someone who uses them. If they are clueless they won't truly give you a proper diagnosis. Not every child needs a band. It seems though that you will rest easier if you get a get a thorough evaluation from someone who is band friendly. Good luck! Mom to Dane 4 yo and Cece 12 mo (DOC Grads) and Olivia 6 yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Anxious Mommy, Try taking a picture of her head from the chin up. This usually does a good job of showing the facial asymmetry as well as forehead bossing. Neither of my banded kid's plagio was strikingly visible from the top. It was better viewed from below. Are you near a Cranial Tech? You can get a free evaluation. They are very honest. We've had members who have been told a band wasn't warranted. Maybe hearing it from the experts will put your mind at ease. How many babies has your ped or neuro banded? It is not uncommon to hear of doctors being ignorant about bands. Make sure you see someone who uses them. If they are clueless they won't truly give you a proper diagnosis. Not every child needs a band. It seems though that you will rest easier if you get a get a thorough evaluation from someone who is band friendly. Good luck! Mom to Dane 4 yo and Cece 12 mo (DOC Grads) and Olivia 6 yo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 --- In Plagiocephaly , " onewhyme " <onewhyme@y...> wrote: > > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > Dear Anxious Mommy, Don't give up. Keep pushing. I'm in the same position except I did go to Cranial Tech....early on. Here's my story..I took my son at 10 weeks of age because I was concerned. His photos were taken and it was determined that he did have some flatness but to try repositioning which I did. (this is normal when babies are this young) I took my son again at 14-15 weeks and did see some good improvement after reviewing the photos with the therapist. At that time, the therapist said.. there wasn't a need to band. The flatness should round out and the bulging areas above the ears is normal. Just keep doing what I was doing. I was so relieved. But over time.. I expected more rounding out and which we did get but it was minimal. My husband and family kept telling me I was nuts. So I regrettably let it go for a while but did finally take him back to Cranial Tech TODAY. My son is now 7.5 months old. A new therapist reviewed his photos and to my shock said..he should get a band! What frustrates me is that she pointed out the bulging areas above the ears. I too pointed these out at his second appt but was told they were normal when in fact...they aren't! I'm frustrated because a professional told me things were fine and now they aren't. The net result is that we wasted precious time. Treatment before 6 months is shorter and better. After 6 months is still works but takes longer. Even though I am frustrated at the amount of time wasted, I will say the people at Cranial Tech were always helpful. The new therapist said the difference in assessment is just sometimes a difference in opinion. I understand her point but I'm still not happy. So I say...keep going until you are satisfied. A mother does know best. I will NEVER doubt myself again. My only saving grace is that I kept an eye on things..quietly. Next time..I won't be so quiet. Good luck and keep me posted.. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 --- In Plagiocephaly , " onewhyme " <onewhyme@y...> wrote: > > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > Dear Anxious Mommy, Don't give up. Keep pushing. I'm in the same position except I did go to Cranial Tech....early on. Here's my story..I took my son at 10 weeks of age because I was concerned. His photos were taken and it was determined that he did have some flatness but to try repositioning which I did. (this is normal when babies are this young) I took my son again at 14-15 weeks and did see some good improvement after reviewing the photos with the therapist. At that time, the therapist said.. there wasn't a need to band. The flatness should round out and the bulging areas above the ears is normal. Just keep doing what I was doing. I was so relieved. But over time.. I expected more rounding out and which we did get but it was minimal. My husband and family kept telling me I was nuts. So I regrettably let it go for a while but did finally take him back to Cranial Tech TODAY. My son is now 7.5 months old. A new therapist reviewed his photos and to my shock said..he should get a band! What frustrates me is that she pointed out the bulging areas above the ears. I too pointed these out at his second appt but was told they were normal when in fact...they aren't! I'm frustrated because a professional told me things were fine and now they aren't. The net result is that we wasted precious time. Treatment before 6 months is shorter and better. After 6 months is still works but takes longer. Even though I am frustrated at the amount of time wasted, I will say the people at Cranial Tech were always helpful. The new therapist said the difference in assessment is just sometimes a difference in opinion. I understand her point but I'm still not happy. So I say...keep going until you are satisfied. A mother does know best. I will NEVER doubt myself again. My only saving grace is that I kept an eye on things..quietly. Next time..I won't be so quiet. Good luck and keep me posted.. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 My opinion differs a little from other responses. I know that we all want whats best for our children but does their head have to be perfectly round from every angle. I am not so sure. Most people get corrected to within a normal range but not 100%. I am not sure how bad your child's head is but it doesn't sound too bad. I am not saying that you should or shouldn't get a band but, I know that little girls will not be teased for something like a slight ear misallignment that nobody notices (as I have that and no one has ever told me except the PT who did my son's DOC band-and that was only after I asked), or a slight flat spot that can never be seen, not even in a pony tail. With that said, I have two children with plagio. My sons was pretty bad to me and other people could notice only if I told them. My daughter's plagio has gotten much better with repositioning, however, I don't think it is 100%, but I will not band her (unless it gets worse). With all of that said, you should probably go to cranial tech to see what they think, but this is just my opinion, because what YOU think is ultimately what matters. God Bless. godsgirl Preston DOC band Brielle repoonewhyme <onewhyme@...> wrote: Hello. I am new to the board. I'll give you my story and ask for input. I read an article in the Parents magazine on "why needs a helmet" when my daughter was 13 weeks old. SO then i started to "investigate" my daughters head and realized she slept to the RIght all the time and was a little flatter on that side. So, i started repositioning her...many times when I went in there at night, she had put herself back to her comfort position of facing the right. Anyway, she now sleeps on her left side and/or her stomach and is off the right side. I brought this to my doc's attention at her 4 month appointment and my doc said that it is already more round than her 2 month appointment. Well, i have been making myself CRAZY by taking pics of her from the top down...i went onto the Cranialtech sight and downloaded the plagio severity assessment. When my daughter was 5 months I made another appointment with my pediatrician and took her in. She again said that she thought it looked much better and it would be fine; she said that her head would continue to round out. I cried. She wanted to know what would make me feel better and I asked for a referral. She sent me to a Neurosurgeon. I saw him, he assessed my daughter...no formal meaurements though. He said that she has "VERY MILD" case. I thought that would make me feel better, but I am still anxious. Basically I can see some very minor ear misalignment. She has the flatness on the Right side and you can feel where the suture (SP?) lines are not even. I have folded up a wash cloth and lined it up to see how much "uneveness" there is...it appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, i show it to says they cannot. I cannot seem to capture it on camera. I can see it best when I look at her from the backside in the mirror. When I look at her from the front in the mirror, sometimes it appears that the right side of her face is more forward than the left. I don't think she has a forehead buldge...if she does, it is MINOR. But, her eyes do not seem uneven, as a matter of fact her L eye is bigger than her R if anything. What should I be looking for? What else should I do? My husband DOES not support this at all. As a matter of fact, my whole family thinks I am being ridiculous. But, like i have read in other posts, I don't want to miss something that there is only a short window to fix. She will be 7 months on the 29th. Some facts: she sat up at 4 months, she now sleeps on her belly always on the left side. I would appreciate any input. I have been so anxious over this for the past 3 1/2 months!Thanks...anxious mommy. E Sparks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 My opinion differs a little from other responses. I know that we all want whats best for our children but does their head have to be perfectly round from every angle. I am not so sure. Most people get corrected to within a normal range but not 100%. I am not sure how bad your child's head is but it doesn't sound too bad. I am not saying that you should or shouldn't get a band but, I know that little girls will not be teased for something like a slight ear misallignment that nobody notices (as I have that and no one has ever told me except the PT who did my son's DOC band-and that was only after I asked), or a slight flat spot that can never be seen, not even in a pony tail. With that said, I have two children with plagio. My sons was pretty bad to me and other people could notice only if I told them. My daughter's plagio has gotten much better with repositioning, however, I don't think it is 100%, but I will not band her (unless it gets worse). With all of that said, you should probably go to cranial tech to see what they think, but this is just my opinion, because what YOU think is ultimately what matters. God Bless. godsgirl Preston DOC band Brielle repoonewhyme <onewhyme@...> wrote: Hello. I am new to the board. I'll give you my story and ask for input. I read an article in the Parents magazine on "why needs a helmet" when my daughter was 13 weeks old. SO then i started to "investigate" my daughters head and realized she slept to the RIght all the time and was a little flatter on that side. So, i started repositioning her...many times when I went in there at night, she had put herself back to her comfort position of facing the right. Anyway, she now sleeps on her left side and/or her stomach and is off the right side. I brought this to my doc's attention at her 4 month appointment and my doc said that it is already more round than her 2 month appointment. Well, i have been making myself CRAZY by taking pics of her from the top down...i went onto the Cranialtech sight and downloaded the plagio severity assessment. When my daughter was 5 months I made another appointment with my pediatrician and took her in. She again said that she thought it looked much better and it would be fine; she said that her head would continue to round out. I cried. She wanted to know what would make me feel better and I asked for a referral. She sent me to a Neurosurgeon. I saw him, he assessed my daughter...no formal meaurements though. He said that she has "VERY MILD" case. I thought that would make me feel better, but I am still anxious. Basically I can see some very minor ear misalignment. She has the flatness on the Right side and you can feel where the suture (SP?) lines are not even. I have folded up a wash cloth and lined it up to see how much "uneveness" there is...it appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, i show it to says they cannot. I cannot seem to capture it on camera. I can see it best when I look at her from the backside in the mirror. When I look at her from the front in the mirror, sometimes it appears that the right side of her face is more forward than the left. I don't think she has a forehead buldge...if she does, it is MINOR. But, her eyes do not seem uneven, as a matter of fact her L eye is bigger than her R if anything. What should I be looking for? What else should I do? My husband DOES not support this at all. As a matter of fact, my whole family thinks I am being ridiculous. But, like i have read in other posts, I don't want to miss something that there is only a short window to fix. She will be 7 months on the 29th. Some facts: she sat up at 4 months, she now sleeps on her belly always on the left side. I would appreciate any input. I have been so anxious over this for the past 3 1/2 months!Thanks...anxious mommy. E Sparks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 I would like to add that I was told I was being ridiculous by one doctor. Another said she thought my son was in the " normal " range. He had 18 mm of CVA (I think average is 2 or 3). I can't remember his other measurements but they were hardly within the normal range. The doctor who told me I was ridiculous said he never recommended banding prior to a year because of the natural rounding that would occur. He said only the " helmet people " recommended that because they wanted my money. Boy was his ego bruised at the 6 month checkup when Dane came in wearing a band. There are things other than being teased to consider. A Ped Opthalmologist told me he sees lots of children with untreated plagio. If your eyes are misaligned it makes sense that you may have vision problems. DD was a moderate case. I don't feel she would be teased (let's face the fact there are flat heads everywhere). We were concerned with vision, jaw, ear and sinus problems. Mom to Dane 4 yo and Cece 12 mo (DOC Grads) > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 I would like to add that I was told I was being ridiculous by one doctor. Another said she thought my son was in the " normal " range. He had 18 mm of CVA (I think average is 2 or 3). I can't remember his other measurements but they were hardly within the normal range. The doctor who told me I was ridiculous said he never recommended banding prior to a year because of the natural rounding that would occur. He said only the " helmet people " recommended that because they wanted my money. Boy was his ego bruised at the 6 month checkup when Dane came in wearing a band. There are things other than being teased to consider. A Ped Opthalmologist told me he sees lots of children with untreated plagio. If your eyes are misaligned it makes sense that you may have vision problems. DD was a moderate case. I don't feel she would be teased (let's face the fact there are flat heads everywhere). We were concerned with vision, jaw, ear and sinus problems. Mom to Dane 4 yo and Cece 12 mo (DOC Grads) > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Anxious mommy, It is so easy to become obsessed with anything that might be wrong with our kid's! I did not even noticed my son's uneveness until around 5 mos. I really didn't even know it was plagio, just thought he had a strange little bulge in the left back of his head. I've discussed it many times with my ped who I really trust (we're friends from before kids) and we are in agreement that it is soooo mild I will not pursue a band. He is 9 mos. now and I have been repositioning. There have only been minor improvements, probably due to his age. I, too, find it difficult to capture the uneveness and slight ear missalignment on photos and there is really only one angle which shows it the most. You can check him out in the before/after/ repositioning album under NOAH. Grandparents can really only see what I'm talking about if they run their hand along the back of his head and feel the slight bulging. I do doubt myself regulary and still cringe when I see it in the bathtub, but I really try to maintain perspective about it - hard for me, being a perfectionist. Take a look at some of the other photos and try to determine for yourself just how mild/severe your child is. Consider the cranial tech eval if you have one close (I do not). If my child were anything but very mild I would band. Kerry --- In Plagiocephaly , " onewhyme " <onewhyme@y...> wrote: > > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 Anxious mommy, It is so easy to become obsessed with anything that might be wrong with our kid's! I did not even noticed my son's uneveness until around 5 mos. I really didn't even know it was plagio, just thought he had a strange little bulge in the left back of his head. I've discussed it many times with my ped who I really trust (we're friends from before kids) and we are in agreement that it is soooo mild I will not pursue a band. He is 9 mos. now and I have been repositioning. There have only been minor improvements, probably due to his age. I, too, find it difficult to capture the uneveness and slight ear missalignment on photos and there is really only one angle which shows it the most. You can check him out in the before/after/ repositioning album under NOAH. Grandparents can really only see what I'm talking about if they run their hand along the back of his head and feel the slight bulging. I do doubt myself regulary and still cringe when I see it in the bathtub, but I really try to maintain perspective about it - hard for me, being a perfectionist. Take a look at some of the other photos and try to determine for yourself just how mild/severe your child is. Consider the cranial tech eval if you have one close (I do not). If my child were anything but very mild I would band. Kerry --- In Plagiocephaly , " onewhyme " <onewhyme@y...> wrote: > > Hello. I am new to the board. I'll give you my story and ask for > input. I read an article in the Parents magazine on " why needs > a helmet " when my daughter was 13 weeks old. SO then i started > to " investigate " my daughters head and realized she slept to the > RIght all the time and was a little flatter on that side. So, i > started repositioning her...many times when I went in there at > night, she had put herself back to her comfort position of facing > the right. Anyway, she now sleeps on her left side and/or her > stomach and is off the right side. I brought this to my doc's > attention at her 4 month appointment and my doc said that it is > already more round than her 2 month appointment. Well, i have been > making myself CRAZY by taking pics of her from the top down...i went > onto the Cranialtech sight and downloaded the plagio severity > assessment. When my daughter was 5 months I made another > appointment with my pediatrician and took her in. She again said > that she thought it looked much better and it would be fine; she > said that her head would continue to round out. I cried. She > wanted to know what would make me feel better and I asked for a > referral. She sent me to a Neurosurgeon. I saw him, he assessed my > daughter...no formal meaurements though. He said that she has " VERY > MILD " case. I thought that would make me feel better, but I am > still anxious. Basically I can see some very minor ear > misalignment. She has the flatness on the Right side and you can > feel where the suture (SP?) lines are not even. I have folded up a > wash cloth and lined it up to see how much " uneveness " there is...it > appears minimal like 2-3 mm. I can see the uneveness, but EVERYONE, > i show it to says they cannot. I cannot seem to capture it on > camera. I can see it best when I look at her from the backside in > the mirror. When I look at her from the front in the mirror, > sometimes it appears that the right side of her face is more forward > than the left. I don't think she has a forehead buldge...if she > does, it is MINOR. But, her eyes do not seem uneven, as a matter of > fact her L eye is bigger than her R if anything. What should I be > looking for? What else should I do? My husband DOES not support > this at all. As a matter of fact, my whole family thinks I am being > ridiculous. But, like i have read in other posts, I don't want to > miss something that there is only a short window to fix. She will > be 7 months on the 29th. Some facts: she sat up at 4 months, she > now sleeps on her belly always on the left side. I would appreciate > any input. I have been so anxious over this for the past 3 1/2 > months! > > Thanks...anxious mommy. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 , I don't consider myself an expert on PA, but only can share my own experiences of pains. As I try to make sense out of this terrible illness, yearn for a pattern in how it takes hold of my joints, try to theorize how the medication is winning the battle and I am now finally over the hill and improving everyday-- once again something else arises. I think that we all want to give our illness a name because we think then we can predict how it will affect us, and ultimately prepare ourselves for whatever lies ahead, good or bad. As I journey through this disease I unfortunately don't have the luxury of a predictable path. It started in my right foot, and stayed there for six months. I then suddenly developed some joint pains in my hands which are still present but thankfully have dissapated to where I can function relatively comfortably. I have been taking MTX which has allowed me to feel great. Levels of ESR and CRP normal and I thought I was on my way to remission. Then, all too quickly, my L knee swelled up and developed tremendous pains, and my CRP and ESR went up. This was two months ago. It has since gotten slightly better as I increase my MTX, but is no where near what I want it to be. In addition, I have noticed pains in places I never had them before (no swelling), such as my achilles tendon, L foot (more of nusances than debilitating) This leads me to my theory, which I am curious if you have the same experience... I feel that in my body there is a set amount of inflammatory " mules " . They all started in my foot. When this imroved they needed to land elsewhere, so they went to my hands. When my hands got better, they went to my L knee. If this gets better, they will need to find another home. I just want them to leave my body and find another home. Sorry for my lengthy answer to your question. I wish I could give you a straight forward " yes this is normal " or " no, this is not normal " answer, but as you can see from my experiences I don't feel like there is a " normal " . I am curious to see how others feel. Also curious to know if you are on medication at this time. Todd wend <wend_1966@...> wrote: Hiya all, I have never had any swelling with my PA befor but have recently had a lot of pain in the end finger joints and also my fingers are slightly swollen. They also feel hot and are looking a tadge twisted (hard to explain) is this normal? I am also having a lot of pain on the ball of my left foot that is coming and going. I can't get to Rhumy until June but I have asked for a cancellation appointment if there is one available. Any comments would be helpful. Thank you. Love & Light Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2006 Report Share Posted March 9, 2006 Hi! I just want to say that I agree that there doesn't seem to be any " normal " . I never know what is going to hurt and when and how much it is going to hurt. But for the past year my worst pain has been in the the two places where I know there is permanent damage, in my neck and right hip. Other wise I get little surprises in my feet, ankles, shoulders, ribs and jaws now and then. ~ Todd Gothelf <tgothelf@...> wrote: , I don't consider myself an expert on PA, but only can share my own experiences of pains. As I try to make sense out of this terrible illness, yearn for a pattern in how it takes hold of my joints, try to theorize how the medication is winning the battle and I am now finally over the hill and improving everyday-- once again something else arises. I think that we all want to give our illness a name because we think then we can predict how it will affect us, and ultimately prepare ourselves for whatever lies ahead, good or bad. As I journey through this disease I unfortunately don't have the luxury of a predictable path. It started in my right foot, and stayed there for six months. I then suddenly developed some joint pains in my hands which are still present but thankfully have dissapated to where I can function relatively comfortably. I have been taking MTX which has allowed me to feel great. Levels of ESR and CRP normal and I thought I was on my way to remission. Then, all too quickly, my L knee swelled up and developed tremendous pains, and my CRP and ESR went up. This was two months ago. It has since gotten slightly better as I increase my MTX, but is no where near what I want it to be. In addition, I have noticed pains in places I never had them before (no swelling), such as my achilles tendon, L foot (more of nusances than debilitating) This leads me to my theory, which I am curious if you have the same experience... I feel that in my body there is a set amount of inflammatory " mules " . They all started in my foot. When this imroved they needed to land elsewhere, so they went to my hands. When my hands got better, they went to my L knee. If this gets better, they will need to find another home. I just want them to leave my body and find another home. Sorry for my lengthy answer to your question. I wish I could give you a straight forward " yes this is normal " or " no, this is not normal " answer, but as you can see from my experiences I don't feel like there is a " normal " . I am curious to see how others feel. Also curious to know if you are on medication at this time. Todd Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2006 Report Share Posted June 1, 2006 Yes...it sounds familiar but not everyone has positive blood tests. You can be diagnosed with PA without the blood work being positive. Can you get your PC to send you to a Rheumatologist? -Betz adamsonneil <robby.a@...> wrote: Hi I am wondering if anyone can give me some advice about . Last summer i had some bouts of what i can describe as extremely aching joints in my feet and ankles. The beginning part of the day was ok but it gradually got worse during the day - as i work on my feet. This occured throughout the summer but seemed to get better in the Autumn/winter. Now i've seem to have it back again. I saw my doctor last year who did a blood test and an X- ray of my feet but no diagnosis came from this. I have had Psoriasis of the skin & nails since i was 15 years. Perhaps someone may be able to see a similarity to their symptons? Thanks, Neil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2006 Report Share Posted June 12, 2006 Hi, If you have strep you should be taking something for it. As for the Minocin, and I'm speaking only from experience here, when I took a broader spectrum antibiotic for illness I stopped taking Minocin until I finished the other antibiotic. Regards, Dee rheumatic Advice Hi Again, I want to thank everyone who wrote me about finding a Dr in Seattle, and to those who just wrote to say hello and wish me well. I cannot believe that this group would disband--I have just found you all, and you are my link to the hope I can get through this, and conquer this disease! Please Please continue, as there are those of us who desperately need advice and guidance and an ear for the tough times as well as good. That said I do have questions, plenty, actually. My rheumatologist was actually willing to prescribe the minocin, but he doesn't have the expertise I need to acurately treat my disease. Thus I am still looking for someone, and do have good leads, thanks to you all. The good news is, that my flu like symptoms have resolved, I am eating food again, my weight has stabilized, and my strength has returned. Oddly enough, I was on an antibiotic for a sinus infection before I started the mino (Avelox-a broad spectrum antibiotic) and I had what I believe was a herxheimer's reaction which lasted 3 days. Then suddenly, I began to get better, my symptoms cleared up, and the number of joints which ached reduced dramatically. I was down to one finger joint aching! Now I am off the avelox and began the mino, and my symptoms seem to be returning slowly (but no herx reaction yet). Oddly too at the same time my daughter got a strep infection out of the blue. Could I have given this to her? (I had a history of infections as a child). In reading the Scammell book, it sounds like I should be on something for the strep as well. Any thoughts, advice as to what to ask for with my Dr? Also dosage and for how long? Can I take it while on the mino? Sorry for all the questions, but I am feeling my way through the dark here. Thanks to all of you for your support. I couldn't do it without you! in Seattle To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2006 Report Share Posted July 14, 2006 Hi Neil, Welcome to the group. Sorry I am so late in saying so a few of the others will tell you its not unusual with me. lol Have you attended a Rheumy? If not that should be the first thing to do now. We can't really say if it is PA. We can certainly say that it might be. My first pain was in my left heel. I thought at the time that it was a running injury. I wish just this once that I could have been right but no. lol Get your doctor to refer you to a Rheumy and hopefully you will be on medication that can help sooner rather than later. You have probably already been told this. lol Good luck, In a message dated 02/06/2006 01:28:27 GMT Daylight Time, robby.a@... writes: I am wondering if anyone can give me some advice about . Last summer i had some bouts of what i can describe as extremely aching joints in my feet and ankles. The beginning part of the day was ok but it gradually got worse during the day - as i work on my feet. This occured throughout the summer but seemed to get better in the Autumn/winter. Now i've seem to have it back again. I saw my doctor last year who did a blood test and an X- ray of my feet but no diagnosis came from this. I have had Psoriasis of the skin & nails since i was 15 years. Perhaps someone may be able to see a similarity to their symptons? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 TRUST ME HAVE IT ALL DONE AT ONCE IT'S THE ONLY WAY TO GO CHECK MY JOURNAL OF WHAT I'VE HAD DONE. GOOD LUCK STAY IN TOUCH MARK FROM BOSTON _http://journals.aol.com/immort1/PAININTHENECK/_ (http://journals.aol.com/immort1/PAININTHENECK/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 Hello Randy. I had three Spinal Fusions amost in the same area. I can still walk a short ways with a cane but I use a power wheelchair most of the time. I wish that I had of passed on the Spinal Fusions. I had my Sugries in Nashville Tennessee. I met a guy where I go to church and he had the same doctor and hes not any better. You have a great day. Best Reguards Tommy --- mcnair_randy <mcnair_randy@...> wrote: > I am having conflicting advice from two > neurosurgeons. The first wants > to fuse C4-5 and then wait to decide whether and > when to fuse C5-6 and > C6-7 and a laminectomy. The second wants to fuse > C4-7 and do the > laminectomy six weeks later. Both have viewed a > recent MRI and are > concerned that I am doing irreversible damage to the > spinal cord and > could be paralyzed by a car or other freak accident. > The discs are > aggravating my stenosis with it being the most > obvious at C4-5. I have > lived with a " wait and see " attitude for 13 years on > the advice of my > former, now retired, neurosurgeon. The new, more > aggressive NS says he > would have fused all three discs back in 1993. My > symptoms are > numbness, atrophy in the triceps and burning in the > hands. I have very > little pain. > > Does anyone have similar experiences? Suggestions? > I am going to a > 3rd NS to see two of them agree on the best > approach. Thanks. > > > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2006 Report Share Posted August 22, 2006 Dear Randy, Sorry to hear of your condition. I recently had c6,c7, an t1 fused. I have had no problems with my fusion and at nine weeks from surgery am going to begin physical therapy. Numbness is does not mean that your body is not in pain. It ultimatley means that you are losing function in those body parts and it is your body's way of telling you it needs to be fixed. I am not sure how qualified your surgeon is, but if you can find a qualified one I would say go for the surgery and remove the pressure as soon as possible from your spine. In all that i have read and in reading other peoples story's nothing seem to create more problems than waiting. The longer you keep pressure on your spinal cord, I believe, the greater damage you are doing to your body. Hope this helps. Let me know mcnair_randy <mcnair_randy@...> wrote: I am having conflicting advice from two neurosurgeons. The first wants to fuse C4-5 and then wait to decide whether and when to fuse C5-6 and C6-7 and a laminectomy. The second wants to fuse C4-7 and do the laminectomy six weeks later. Both have viewed a recent MRI and are concerned that I am doing irreversible damage to the spinal cord and could be paralyzed by a car or other freak accident. The discs are aggravating my stenosis with it being the most obvious at C4-5. I have lived with a " wait and see " attitude for 13 years on the advice of my former, now retired, neurosurgeon. The new, more aggressive NS says he would have fused all three discs back in 1993. My symptoms are numbness, atrophy in the triceps and burning in the hands. I have very little pain. Does anyone have similar experiences? Suggestions? I am going to a 3rd NS to see two of them agree on the best approach. Thanks. --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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