Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Stacey! Please don't be discouraged - 3 weeks is a very little amount of time so far, especially for severe brachy correction. A recent study showed that brachy correction is more difficult, and can take longer to correct. That's because, in layman's terms, you are trying to fill out the entire back 1/2 of the head instead of just 1/4 of the head (as with plagio.) I'm sure your son will get good correction, it will just take more time than a mere three weeks! I wouldn't worry about not seeing very much improvement with banding. With brachy in particular, even a modest head shape change translates into a tremendous improvement in aesthetics. I'm keeping my fingers crossed for you all that your son has a big growth spurt right around the corner. Please keep us posted, and know that we are here for support whenever you need it, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " oscaredwink " <oscaredwink@...> wrote: > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Stacey! Please don't be discouraged - 3 weeks is a very little amount of time so far, especially for severe brachy correction. A recent study showed that brachy correction is more difficult, and can take longer to correct. That's because, in layman's terms, you are trying to fill out the entire back 1/2 of the head instead of just 1/4 of the head (as with plagio.) I'm sure your son will get good correction, it will just take more time than a mere three weeks! I wouldn't worry about not seeing very much improvement with banding. With brachy in particular, even a modest head shape change translates into a tremendous improvement in aesthetics. I'm keeping my fingers crossed for you all that your son has a big growth spurt right around the corner. Please keep us posted, and know that we are here for support whenever you need it, Christie (Mom to Repo'd Remy) --- In Plagiocephaly , " oscaredwink " <oscaredwink@...> wrote: > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 I undertand how difficult it is. Comparing headsicle #1 to headsicle #2, neither my husband nor I saw much improvement. I'd say the first DOCBand provided little improvement but that has nothing to do with CT and everything to do with growth spurts. But YES, I was very, very discouraged at first going into the 2nd band. We are seeing much greater improvement of my daughter's head shape now. She was a severe brachy and moderate plagio case. She's been upgraded to mild-moderate. Her hair is beginning to cover the remaining flatness. Her facial assymetry has seen the greatest improvement. Her head is finally slightly longer than it is wide. At first consult her head was 1mm within exactly square. Measurements were 3mm for facial and remained 3mm for the 2nd banding. CV began at something like 11 mm and had improved to 9. We'll get the final numbers in a few weeks when she graduates. Hang in there. Hopefully knowing others have had to play the waiting game will help you. There are no guarantees but I too felt a little over-promised when we first got started with treatment. That could have been my expectations getting out of whack with the positive encouragement I was getting from the group to seek help even at my daughter's older age (11 1/2 months at first bandign) Three weeks is probably too soon to expect a lot of change unless your child is young. That's why the treatment is usually scheduled for 16 weeks. You'll get through it as we all have. If you're feeling down again, just post and plenty of fellow plagio friends will pump you back up. Take care. ~ Liliana 17 months DOCBand #2 since 12/12/05 --- In Plagiocephaly , " oscaredwink " <oscaredwink@...> wrote: > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 I undertand how difficult it is. Comparing headsicle #1 to headsicle #2, neither my husband nor I saw much improvement. I'd say the first DOCBand provided little improvement but that has nothing to do with CT and everything to do with growth spurts. But YES, I was very, very discouraged at first going into the 2nd band. We are seeing much greater improvement of my daughter's head shape now. She was a severe brachy and moderate plagio case. She's been upgraded to mild-moderate. Her hair is beginning to cover the remaining flatness. Her facial assymetry has seen the greatest improvement. Her head is finally slightly longer than it is wide. At first consult her head was 1mm within exactly square. Measurements were 3mm for facial and remained 3mm for the 2nd banding. CV began at something like 11 mm and had improved to 9. We'll get the final numbers in a few weeks when she graduates. Hang in there. Hopefully knowing others have had to play the waiting game will help you. There are no guarantees but I too felt a little over-promised when we first got started with treatment. That could have been my expectations getting out of whack with the positive encouragement I was getting from the group to seek help even at my daughter's older age (11 1/2 months at first bandign) Three weeks is probably too soon to expect a lot of change unless your child is young. That's why the treatment is usually scheduled for 16 weeks. You'll get through it as we all have. If you're feeling down again, just post and plenty of fellow plagio friends will pump you back up. Take care. ~ Liliana 17 months DOCBand #2 since 12/12/05 --- In Plagiocephaly , " oscaredwink " <oscaredwink@...> wrote: > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hang in there Stacey! Three weeks is a fairly short period of time and although some parents see improvement almost right away, it all depends on your child's growth. Maybe your son is working up to a great big growth spurt. Don't get dicouraged yet. Keep us updated. Becky , repo grad Pittsburgh, PA > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2006 Report Share Posted March 3, 2006 Hang in there Stacey! Three weeks is a fairly short period of time and although some parents see improvement almost right away, it all depends on your child's growth. Maybe your son is working up to a great big growth spurt. Don't get dicouraged yet. Keep us updated. Becky , repo grad Pittsburgh, PA > > Just to re-introduce myself, since I mostly lurk here, we have son > that has been DOC banded for about 3 weeks. He has severe brachy > and moderate plagio. His head shape is changing but it is very, > very subtle. I feel like I read such great stories here about > improvement and we frankly aren't seeing that. (He also has tort > and is in PT weekly. We are seeing that improve, but very, very > slowly.) > > On the positive side, for the first time since he was born, we don't > see his head getting worse in anyway. If nothing else, the band is > buying us time to make him a stomach sleeper and also teach him to > roll over. > > But do some people, even if rarely, just not see very much > improvement with banding? I am embarassed to admit that we did not > ask this question prior to banding him probably because we were just > so desperate to do something (as repo was having no impact). I am > just trying to prepare myself for the fact that his result might not > be very dramatic. > > Thanks for any insight-- > Stacey > in Charlotte > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2006 Report Share Posted September 11, 2006 When was your son last tested (educational testing)? Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2006 Report Share Posted September 12, 2006 Hi :, I am sorry you are having so many problems. What I would like to know is has he had any assessments to see where he has improved, where he still needs work (Basically any testing, too) What have the folks in the school told you? Have you talked to the principal? Also did you go to the superintendent? I wouldn't let it go a day further without some " SQUEEKING " If they aren't even attempting (In good faith, not the half hearted attempts) to help him out, something needs to be changed immediately. As I think Dr. Phil would say,,, " the only thing worse than your son having lack of help for one month, is your son having lack of help for one month and a day. " Keep pushing!!!!!!!!! *smiles* B > > I am really getting disgusted here. It's the fourth week into the > school year and my son's bus service still is not set up. It is in his > IEP that he gets door to door bus service. Not only that but my son is > in the seventh grade and I'm kidding he is still working on second > grade work. My son has mastered these skills time and time again. I > am writing to the Department of Education requesting a mediator but > that does not look promising. My son is very high functioning but when > it comes to school work he needs lots of repition. Does anyone have any > suggestions? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 I never did get to go back on the mtx and enbrel after the strange staph infection in my elbow. Every time we tried starting me up on the mtx again, I'd get another upper respiratory problem. So it has been since last July since I've had that.. I really didn't Like taking it.. I always was just a bit nauseous but dang, it Was working. My Rheumy just started me on plaquenil by itself on the grounds that " we have to do something " ; I also started myself on acupuncture treatments and regular chiropractic. I think the acupuncture is helping but it's slow, and it's pricey. I'm also trying to do gentle exercise 2-3 times a week at one of these places with the hydraulic machines and bicycles and so forth -- it's a problem because I'm extra busy driving my husband places (he's grounded for dui and that's just as well ... but ..... and meetings and I get sooooooooooo tired it's hard to be disciplined. I'm definitely seeing some degeneration, particularly in my lower back and wrist joints. Just needed to whine... Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 My sister sent me something on an infrared pad called Thermotex Platinum. I read the info on it and it said it does something to the enzyme that's responsible for attacking the synovial fluid. I haven't tried it, but one of her friends has it and swears by it. I think they sell them on ebay, and other websites. I plan on getting one for my hands and wrist as soon as I can afford it. They said 3 30 minute treatments per week... Good luck, Carla <Mom2Harley@...> wrote: I never did get to go back on the mtx and enbrel after the strange staph infection in my elbow. Every time we tried starting me up on the mtx again, I'd get another upper respiratory problem. So it has been since last July since I've had that.. I really didn't Like taking it.. I always was just a bit nauseous but dang, it Was working. My Rheumy just started me on plaquenil by itself on the grounds that " we have to do something " ; I also started myself on acupuncture treatments and regular chiropractic. I think the acupuncture is helping but it's slow, and it's pricey. I'm also trying to do gentle exercise 2-3 times a week at one of these places with the hydraulic machines and bicycles and so forth -- it's a problem because I'm extra busy driving my husband places (he's grounded for dui and that's just as well ... but ..... and meetings and I get sooooooooooo tired it's hard to be disciplined. I'm definitely seeing some degeneration, particularly in my lower back and wrist joints. Just needed to whine... Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Hello, I have been away from this site for quite some time. Not by choice but due to a lot of medical problems, way too many to mention. Of course all due to the R.A. I was curious as to what MTX is. Also, just wanted to give you some insight on plaquenil, if your doc hasn't already. Just make sure you get your eyes examined every six months. Plaquenil can cause irreversible damage and the lost of sight. One more question, has anyon had problems with being anemic due to RA??? This is one of many problems I am having. Thanks " T " > > I never did get to go back on the mtx and enbrel after the strange staph > infection in my elbow. Every time we tried starting me up on the mtx again, > I'd get another upper respiratory problem. So it has been since last July > since I've had that.. I really didn't Like taking it.. I always was just a > bit nauseous but dang, it Was working. My Rheumy just started me on > plaquenil by itself on the grounds that " we have to do something " ; I also > started myself on acupuncture treatments and regular chiropractic. I think > the acupuncture is helping but it's slow, and it's pricey. I'm also trying > to do gentle exercise 2-3 times a week at one of these places with the > hydraulic machines and bicycles and so forth -- it's a problem because I'm > extra busy driving my husband places (he's grounded for dui and that's just > as well ... but ..... and meetings and I get sooooooooooo tired it's hard to > be disciplined. > > I'm definitely seeing some degeneration, particularly in my lower back and > wrist joints. Just needed to whine... Carla > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 > > > > I never did get to go back on the mtx and enbrel after the strange > staph > > infection in my elbow. Every time we tried starting me up on the > mtx again, > > I'd get another upper respiratory problem. So it has been since > last July > > since I've had that.. I really didn't Like taking it.. I always was > just a > > bit nauseous but dang, it Was working. My Rheumy just started me > on > > plaquenil by itself on the grounds that " we have to do something " ; > I also > > started myself on acupuncture treatments and regular chiropractic. > I think > > the acupuncture is helping but it's slow, and it's pricey. I'm > also trying > > to do gentle exercise 2-3 times a week at one of these places with > the > > hydraulic machines and bicycles and so forth -- it's a problem > because I'm > > extra busy driving my husband places (he's grounded for dui and > that's just > > as well ... but ..... and meetings and I get sooooooooooo tired > it's hard to > > be disciplined. > > > > I'm definitely seeing some degeneration, particularly in my lower > back and > > wrist joints. Just needed to whine... Carla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 If you look up MTX on the web there are sites that will give you good general information. I am on Plaquenil, MTX and Humira. You are right about the Plaquenil and having to get your eyes checked. In addition, I am darker skinned and noticed light patches forming around my cheeks and dark spots on my lips in the middle of last summer (even wearing 45+SPF sunscreen and a hat!). I thought it was MTX but my dermatologist said it was Plaquenil. I stopped (after talking to my Rheumy) it since he said it was irreversible. I'm not sure either of them were right that it's the Plaquenil but I seem really sensitive to the sun b/c of the above meds. Another FYI...I guess. Anyone have similar experience with skin sensitivies to these or other types of RA meds? Smita > > > > I never did get to go back on the mtx and enbrel after the strange > staph > > infection in my elbow. Every time we tried starting me up on the > mtx again, > > I'd get another upper respiratory problem. So it has been since > last July > > since I've had that.. I really didn't Like taking it.. I always was > just a > > bit nauseous but dang, it Was working. My Rheumy just started me > on > > plaquenil by itself on the grounds that " we have to do something " ; > I also > > started myself on acupuncture treatments and regular chiropractic. > I think > > the acupuncture is helping but it's slow, and it's pricey. I'm > also trying > > to do gentle exercise 2-3 times a week at one of these places with > the > > hydraulic machines and bicycles and so forth -- it's a problem > because I'm > > extra busy driving my husband places (he's grounded for dui and > that's just > > as well ... but ..... and meetings and I get sooooooooooo tired > it's hard to > > be disciplined. > > > > I'm definitely seeing some degeneration, particularly in my lower > back and > > wrist joints. Just needed to whine... Carla > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 Welcome back, T! Sorry to hear that you've had a lot of problems while you were away. MTX = methotrexate Anemia is very common in RA. Not an MD [ ] Re: Very discouraged > Hello, > I have been away from this site for quite some time. Not by choice > but due to a lot of medical problems, way too many to mention. Of > course all due to the R.A. I was curious as to what MTX is. Also, > just wanted to give you some insight on plaquenil, if your doc hasn't > already. Just make sure you get your eyes examined every six > months. Plaquenil can cause irreversible damage and the lost of > sight. One more question, has anyon had problems with being anemic > due to RA??? This is one of many problems I am having. Thanks " T " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 I don't blame you for feeling frustrated, Carla. You've been through a lot. Have you been with the same rheumatologist all along? Maybe getting a second opinion would be a good idea. Not an MD [ ] Very discouraged >I never did get to go back on the mtx and enbrel after the strange staph > infection in my elbow. Every time we tried starting me up on the mtx > again, > I'd get another upper respiratory problem. So it has been since last July > since I've had that.. I really didn't Like taking it.. I always was just a > bit nauseous but dang, it Was working. My Rheumy just started me on > plaquenil by itself on the grounds that " we have to do something " ; I also > started myself on acupuncture treatments and regular chiropractic. I > think > the acupuncture is helping but it's slow, and it's pricey. I'm also > trying > to do gentle exercise 2-3 times a week at one of these places with the > hydraulic machines and bicycles and so forth -- it's a problem because I'm > extra busy driving my husband places (he's grounded for dui and that's > just > as well ... but ..... and meetings and I get sooooooooooo tired it's hard > to > be disciplined. > > I'm definitely seeing some degeneration, particularly in my lower back and > wrist joints. Just needed to whine... Carla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2007 Report Share Posted February 13, 2007 I was anemic, but it was determined that a bleeding ulcer was causing the anemia. The doctor treated me for the ulcer and prescribed iron for the anemia. I was going through radiation treatments following breast cancer surgery, and actually I think that that prescription iron helped me get through that. I quickly gained back the 15 pounds I had lost, unfortunately, because the iron really increased my appetite. I think you can skip the ulcer and get anemia from the RA, also, and I don't know if the same treatment would work or not. Sue On Monday, February 12, 2007, at 01:20 PM, tyeakey12041959 wrote: > One more question, has anyon had problems with being anemic > due to RA??? This is one of many problems I am having. Thanks " T " > Quote Link to comment Share on other sites More sharing options...
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