Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 No Celia, It was the wonderful doctor before him. HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 Cahty, I'm in Ontario. Jackie is closer to you, she's in B.C. We see Dr. Hedden at Sick Kids. Did you say that Nicky has a 75 degree curve ? If so, get him into a cast as soon as possible. Maybe its not too late to avoid surgery in the future. But you must act quickly. I think once the curve gets beyond a certain level (70 or 80 depends on the child), you reach the point of no return. There is still a chance that you can get your child straight through serial casting. You won't know unless you give it a go. Celia > Hi Celia, > It's nice to know that I'm not the only Canadian on this site! > We live in Calgary. Where do you live? Where are you being treated? > Nice to hear from you!! > (Nicky's Mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2004 Report Share Posted May 2, 2004 , Something tells me things will turn out well for little Nicky. He has you, his mommy looking out for his best interests. If you're looking into the rib as a possibility, check out the VEPTR website. This site is made up of parents whose children are in the TRP. There is one mom from Calgary who travels every six months to Texas to have the expansion for her son. I think the site is at: http://www.veptr.com/ P.S. Is Nicky wearing his brace at all ? The casts are not as tight. They are very comfortable on the child. Deirdre does everything in her cast. Most people don't even realize there is something wrong and that she wears a cast. Only close friends and relatives know. Casting may be something you might want to consider while you are looking into the titanium rib. You would have to travel to the States since it's not available in Canada yet. talk soon, Celia Celia > Hi Celia, > I have to correct you on your assumption that they are going to fuse > Nicky's spine. They are actually planning to put a " growth rod " in, > and possibly the titanium rib. They definately won't be doing a > fussion! I have read alot of positive things about this treatment > also, so at this point I'm just trying to find out what other > options are out there. One other thing I should mention is that > Nicky is a very active and headstrong little boy! He HATED his brace > and complained about it constantly, all day long! Also, he was like > a different child when he had his brace on, laying around alot and > not really wanting to do very much! The instant change in him when > his brace came off was amazing. He would be smiling and running > around like crazy! For this reason, I don't know how well he would > do with casting. I'm not saying that I wouldn't have him casted if > it was the best option for him, I'm just trying to find out as much > as I can, so I can make an informed decision about his treatment!! > I really appreciate your input - Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Celia, Thanks... About congenital cases...It all depends on what type of congenital. Some children have structural scoli in may areas of their spine (all different types of anomolies), and so bracing wouldnt be effective, and may be dangerous to some. I do wish we could convice these docs to use casts on some of these congenital cases, though...Either way, they could only help. We dont expect casts to straighten a structural/congenital case, but why not use them to buy the child more time before surgery? (Since bracing is so temporary, and ineffective for small babes..) Casts can get more growth on the childs side... Not to mention, casts ARE more comfortable, no matter what these docs and brace manufacturers may lead everyone to believe. Sadly Celia, most docs just wait until the curve is jeopardizing internal organs and respitory function, then operate...... Hopefully, we can all change that in time...Our scoli kiddos deserve it! HRH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2004 Report Share Posted May 25, 2004 Well, I can tell my husband now that I cracked someone up besides myself - LOLOLOL. Steph > Steph, > > > Your comment: > > " it's not like we're asking stupid questions like, 'oh, when can she > eat hot dogs after her back surgery? " > > > is SO funny, it's really cracking me up !!! > > > > > > Celia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2004 Report Share Posted May 28, 2004 Sorry , I never thought of that. You're researching treatments in Spanish and German ? Did you say that you are also reading medical books ? WOW !!! Your daughter is so lucky to have YOU for a mom !! > Hi Celia, > I did realize that does not live in France, I just was > wondering if he read any of the scoliosis information in French. I > like to keep up with what other countries are doing, or try to see > how they look at it. I just thought maybe he may have run across > some stuff. I wouln't think that all the best information or latest > treatments would be in English, I would think there might be some > good info in other countries. I would travel to any where to get > the right treatment, as i am guessing most would. Just curious, > that's all. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Celia, Of course will be "watched." I can certainly find a Dr. here to xray him once a year. I live 1 hr. south of LA, and 1 hr. north of San Diego. We have lots of orthopaedic Dr.'s in Southern California. I would only return to Utah if we had a relapse. was treated early enough with serial casting, that I don't think we will have that issue. Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 , Thank you! You said exactly what my next post was going to be! I also take offense to that statement. Unbelievable!! Celia, Your social etiquette is really lacking these days, you really need to be careful about how you say things. They are just..hmmm...NOT NICE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Crista, These children have to be monitored - whether or not they are straight - until they stop growing ! So, are you planning to stop seeing Dr. D'Astous after three years ? > > > Celia, > I know for a fact that Dr, Mehta never put a child in a cast for longer then > 10 weeks at a time. She may have done a series of casts for 3 years and then > a brace. She believes in bracing after casting I know this because I have > spoken to her 4 times regarding . > Celia, I am very happy that Deirdra has done so well in her cast. Your Dr. > chose Fiberglass, great! But the reason they use plaster is the same reason > they use plaster for club feet, better correction. I was able to get a > fiberglass cast here in California, but chose to travel to see Dr. D'Astous. I don't > mean to sound argumentative but you did direct an email to me. > When you say Scoliosis is a long term issue, I don't understand that. Yes, a > child with Congenital Scoliosis will have long term issues but Idiopathis > Infantile Scoliosis does not have to be a long term issue. Look at Tyler for > instance. His curve was right up there with Deirdra and 's. He was in > a series of 3 plaster casts for a total of 6 months, went to a brace for > several months and needs no more treatment. His curve and Rvad were both at 50ish. > Tyler's curve is under 10 and his RVAD is 2. Scoliosis isn't even Scoliosis > until it is over 10 degrees. I don't even think for one minute that > will be in a cast next year. . I never look at it that way. > If it ever got to the point that Dr. D'Astous stopped casting > prematurely, you can bet I would be traveling to Europe to get care for . > > Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Oh ... O.K. I guess patient/doctor loyalty is out the window when you have to travel thousands of miles ? Celia > > > Celia, > Of course will be " watched. " I can certainly find a Dr. here to > xray him once a year. I live 1 hr. south of LA, and 1 hr. north of San Diego. > We have lots of orthopaedic > Dr.'s in Southern California. I would only return to Utah if we had a > relapse. > was treated early enough with serial casting, that I don't think we > will have that issue. > > Crista Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2004 Report Share Posted May 31, 2004 Celia, I dont mean to sound rude, but you really need to chill out. There is nothing wrong with having your child treated by someone other than your regular physician. At the same time there is nothing wrong with having a closer doctor doing the monitoring. As a matter of fact, thats what we are doing with Nate. He is being seen by the only ortho here in Dayton that specializes in Pediatric Spines. This ortho DOES NOT CAST. I have spoken with him about it on SEVERAL occations and he will not cast Nate. However, I have also been to Childrens in Cincinnati, OH an hour away. The doctors there have agreed to cast Nate if he progresses. They also TOLD me to continue to have him monitored in Dayton so I wont have to travel so far. They encouraged it! When I spoke to the ortho here, he knew the ortho in Cincy and said I should do what is best for my child, even if that means taking him to another doctor. He does not have a problem with seeing Nate and he knows I will take him elsewhere to be treated should he get worse. Loyalty means honesty... I have been very open and honest with both of his doctors. Doctors who refuse to treat because you may see someone else are not ones I would trust my child with anyway!! They are one sided and " set in thier ways " and I dont feel that that is best for my child. As far as your comment on Dr. A'stous(sp) I found it offensive. It was like you were calling these children " guinea pigs. " I didnt like it and I dont feel furthur comments like that would be appreciated in this site! Our beautiful children are getting the valuable treatment they need. And the fact is ITS WORKING! Please keep in mind that there are SEVERAL parents whose children are being treated by him in this group and making comments like that may be very offensive to all of them!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 , wasn't Nate's Dr. one of the ones we heard at that seminar? If so, I was standing there when brought up the subject of casting to him (again, it appears) and he said he will not cast. So, while he is willing to monitor, has started looking for a dr that will cast - there is nothing wrong with that! And while I believe would travel anywhere to get the correct treatment for her son, she is fortunate that it may only be 1 hour away. A lot of us are not that lucky. If you remember, I took to Boston (from Cincinnati) looking for treatments. Now, I am happy to say, that while the TRP may end up not being the treatment for her, she now has 2 world class drs. in world class hospitals looking out for her and communicating with each other. I also want to note, for those that may be new or may have forgotten, is a congenital scoliosis patient, not infantile - so we have some totally different issues to deal with. But, I have learned a TON being on this list, and I will say that I would encourage anyone whose child has infantile to contact and her group. Gail Re: Celia Celia,I dont mean to sound rude, but you really need to chill out. There is nothing wrong with having your child treated by someone other than your regular physician. At the same time there is nothing wrong with having a closer doctor doing the monitoring. As a matter of fact, thats what we are doing with Nate. He is being seen by the only ortho here in Dayton that specializes in Pediatric Spines. This ortho DOES NOT CAST. I have spoken with him about it on SEVERAL occations and he will not cast Nate. However, I have also been to Childrens in Cincinnati, OH an hour away. The doctors there have agreed to cast Nate if he progresses. They also TOLD me to continue to have him monitored in Dayton so I wont have to travel so far. They encouraged it! When I spoke to the ortho here, he knew the ortho in Cincy and said I should do what is best for my child, even if that means taking him to another doctor. He does not have a problem with seeing Nate and he knows I will take him elsewhere to be treated should he get worse. Loyalty means honesty... I have been very open and honest with both of his doctors. Doctors who refuse to treat because you may see someone else are not ones I would trust my child with anyway!! They are one sided and "set in thier ways" and I dont feel that that is best for my child.As far as your comment on Dr. A'stous(sp) I found it offensive. It was like you were calling these children "guinea pigs." I didnt like it and I dont feel furthur comments like that would be appreciated in this site! Our beautiful children are getting the valuable treatment they need. And the fact is ITS WORKING! Please keep in mind that there are SEVERAL parents whose children are being treated by him in this group and making comments like that may be very offensive to all of them!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 In a message dated 1/29/2005 7:48:07 PM Eastern Standard Time, connieknwnj@... writes: <<< i feel like i cant think again and muscle spasms like crazy, im thinking to ask the doctor to put me on 600 doxy again or iv. >>> Sounds like you are going through withdrawal symptoms. Connie Can one have withdraw from Antibiotics? I always thought it was just from meds that were addictive... Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2005 Report Share Posted January 29, 2005 <<< i feel like i cant think again and muscle spasms like crazy, im thinking to ask the doctor to put me on 600 doxy again or iv. >>> Sounds like you are going through withdrawal symptoms. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2005 Report Share Posted January 30, 2005 Take anything long enough.....and your body still wants it........so I would think you could have the same thing with abx. Connie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 I think what is happening is a relaspe, not a withdrawal. When you are on antiobiotics it makes the ketes go into cysts form, then when you stop the abx the cysts " hatch " into ketes. Thus- relaspes That is why some lymies are looking for other answers/treatments. There is a new lyme group on called - lymestrategies from the www.lymephotos.com Some lymies are using Colloidal silver because it doesn't make the ketes go into cysts, it just kills it. After 5yrs of oral/iv abx and still testing positive, I started on CS www.natural-immunogenics.com And will take this forever if I have to, to be rid of this terrable disease. lucher@... PrincessRobyn70@... wrote: In a message dated 1/29/2005 7:48:07 PM Eastern Standard Time, connieknwnj@... writes: <<< i feel like i cant think again and muscle spasms like crazy, im thinking to ask the doctor to put me on 600 doxy again or iv. >>> Sounds like you are going through withdrawal symptoms. Connie Can one have withdraw from Antibiotics? I always thought it was just from meds that were addictive... Robyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Hi Celia, If you can't find a rheumatologist to prescribe for you, naturalpathic physicians can prescribe antibiotics. Also, from my experience, you might want to read up on the dose of minocin tolerated. Not everyone can tolerate 200 mg--I take 50 mg 3x a week at the moment. I was encouraged to do so by members of this group, Great advice for me. ew Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.