Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 Hi ,You need the MRI to tell you I your child has congenital scoliosis not idiopathic or something else going on that is causing the spine to curve. If it is congenital, Mehta casting most likely isn't the best course of treatment.I also first noticed the rib hump/flare on my daughter at 9 months. Her spine didn't curve until 11 months, when she tried to stand. This is caused by the spine's rotation.I would go ahead with the MRI, that will rule things out. If possible I would have it done at a children's hospital, if not then have a pediatric anesthesiologist. There are risks with general anesthesia, but the doctor will go over that and will let you know the risk.After the MRI determines you have idiopathic, I would send your xrays and MRI to a Mehta trained doctor and ask his opinion. They typically don't cast under 20*, so your baby is on the edge. There is a 5* error with measuring xrays. I have had the same doctor give me 2 different measurements when reading the same xray at different times!!Go with your gut and what you think is the right thing to do. I wish I had done that and not waited 1 year, as our "best in the west surgeon" advised us to do.Liz, Mom to Keira 3 yrs, in 1st brace after 4 casts at SLCSubject: wait and watchTo: infantile_scoliosis Date: Friday, July 10, 2009, 8:19 PM I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 The MRI is important, it adds a pice to the puzzle. Ask a doctor. If Dr. Bosch said it is ok, then do it. Also, I think six months is a good time to do this. I also feel that SLC is the best place to do it. Your child right now is flexible, more so then when I start at 13 months. I would tell you to fight for your child. Write the Doc at SLC, tell him how important this is for your child, and how you want to do it soon to try to avoid a longer process latter on. Explain to them that even if it is not to bad right now, that his curve could jump, and it could take longer to fix. However, this said, you are the best judge of your child, what do you feel, and what do you think needs to be done. Your the only one who can talk for your baby. Josh > > I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 , My daughter was first diganosed at 11months at a 23 degree curve. 2 specialists told us to wait and see (6 months to a year) I did not feel comfortable with that. we then went to a Mehta trained doc who told us that our daughter looked " boarderline " on paper but looking at how her ribs jutted in her back--well that was a different story. There was rotation. He said the decision was completely ours, but that he thought she would be an excellent candidate for casting(after MRI of course). Our little girl is currently in her 1st cast but believe me, I wish I could have caught it where you're at right now. Good luck with everything(: Dianna (mommy to Marcela, 13 months) > > I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 My advice would be NOT to wait to get the mri. I actually wanted to wait and my dr urged me to go forward and my son did fine AND they found underlying spinal cord issues that could have contributed to the curvature. So I am glad we did the MRI right away. Joan To: infantile_scoliosis Sent: Friday, July 10, 2009 10:19:17 PMSubject: wait and watch I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 hi michelle~ The reason, as you probably know the drs. want you to wait is because 90% of infantile scoliosis cases resolve on their own in the first year of life....HOWEVER~ is truly the most difficult scenario..because when waiting to see if your child is resolving, if they aren't, they could progress rapidly in some cases and need more treatment because you waited. Such a stressful place to be I went with casting before I knew if my son was progressing because I did not want to take the chance. Looking back~ when one of my doctor's asked me to wait an additional 4-6 weeks to see if my son was progressing, I should have. so if I were you....I would wait but I would not wait 3-4 months...I would ask for xrays in 6-8 weeks. I would also schedule the MRI for just after those xrays. so in 6-8 weeks, you get xrays and find out your child has improved...no harm in canceling the MRI. or you may find out your child has stayed the same, the MRI is in place..or if you child has progressed, you have the MRI ~ and you are ready for casting. I find it very stressful when doctors say if you see him/her getting worse, give us a call. In our case, my son had a 45 degree COBB and nobody could detect it from looking at him or holding him( he did not have any rotation, rib hump, asymmetry)...if I didn't know a 45 degree curve, how am I going to know a 60 degree curve, My son is in a brace and we take the brace off and debate whether he looks worse.... and convince ourselves he is worse and stress for weeks until the next xray only to find out he has improved or is the same. It is very stressful wondering if your child has gotten worse especially just by looking at him. some parents take weekly pictures which is a great idea to monitor whether there is change. My son was 6 months old when he had the MRI with general anesthesia~ And I think 6 months is the youngest drs. like to put children under. But they also don't want to put them under if the don't need to thus waiting until after the next xrays. There is no difference with having the MRI now or later..it is really to determine if there are any other issues and to see if the scoli is idiopathic or congenital (which is important) but can definitely wait until after the next xrays. As soon as my son was diagnosed we were told to have a cardio work up, urinary work up (this the wrong name...but I can't think of it..includes an ultrasound of the kidneys,etc to make sure there is no urinary reflux..different then GI reflux) and an MRI. We were told kids with infantile scoli tend to have more heart problems and urinary reflux. I am not sure if they are still telling parents to do these things. My son is 23 months now. He had one cast and has been braced for 1 year. He is not the typical scoli child (what my drs. say)~ he was always a chunky baby (kids with scoli tend to be thinner kids) with not a single other issue~ he has never progressed but he has not resolved within the first year of his life...he improves and then plateaus... he started his journey at 6 months at 45 degrees cobb and 25 RVAD and is down to 12 degrees COBB, no RVAD. Here's the thing...you don't know what the scoli journey is going to bring you...you pray that your child will be one of the one's in the 90% resolving but you prepare as if he/she is not. You make contact with a mehta trained dr.(decide what is closest and where you want to go~ send in an application), plan/schedule the MRI and wait until the next xrays...and remember to enjoy every minute with your little one. I wish I would have done less worrying and more playing...especially when waiting for the NEXT appointment (because there are a lot of them when you first start out on this journey) Best of Luck to you.. mom to Luke, 23 months, wait and watch I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. Stay cool with this summer's hottest movies. Moviefone brings you trailers, celebrities, movie showtimes and tickets! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 , My son was dx at 6 mos old by his primary care dr. We had xrays done and his curve was 12 degrees. We were then refered to an ortho who said wait three months and see. At that 3 mo check his curve was 36 degrees!!! Now at 11 mos his curve is 46 degrees and progressing rapidly. We are just now getting the correct care that he needs. Push your doctor not to wait and see and ask to be referred to a shriners hospital or where ever is the closest place to you to do the casting. Do the MRI asap because the hospital will want that done before they can cast. Why cant they just sedate your child instead of general anestheia? My son has his MRI of head and spine done at 9 mos old under sedation thru and iv in his foot and it went just fine. I would ask about that. Good luck to you! -- In infantile_scoliosis , " michelle.board " wrote: > > I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 My husband first noticed that our son's stomach bulged out when he was about two months old. I told him he was crazy and that was fine, maybe he was just full. Then at four months old we really noticed that he had a lump on the right side of his spine. We took him to our pediatrician, and he told us that they needed to do a CT to make sure he didn't have a tumor or something, that was super scary. The CT showed that it was scoliosis, not a tumor. This was in September when he was six months with a close to 45 degree curve. By the time we got to the specialist November he was at 47 degrees. He told us to wait and see because, "most babies just grow out of it." When we got him checked in January he was at 50 degrees, he said that wasn't a big increase and to wait four more months. When we took him back in May he was at 57 degrees, then in June 60 degrees. Now I can only imagine what he is. You have to push your doctors to do something. In progressive scoliosis time is not your friend, and it only gets worse with growth. If I would have known then what I know now, would already be in a cast and well on his way to being straight. WE just had one doctor tell us that if we would have come in January there would have been hope for him, but now he is considered incurable. It hurts most to know that if I would have educated myself then he would be fine. Beth Rettinger Mother Of Rettinger Still waiting to get an appointment at SLC(what a busy place) > > I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2009 Report Share Posted July 11, 2009 > > I am worried that I have seen a couple of post from people that say not to wait and watch. Camden's curve is 24. Did anyone else start with this low of a curve before it became progressive? He is six month old and we were told by two experts not to do the MRI yet and wait 3 or 4 months to do xrays to see where his curve it at. His local doctor ordered the MRI but also said wait three months to xray again to see where his curve is. It is scary because I don't know if I will really be able to tell if it is getting better or worse. His ribs started to bulge out on the left side of his back around four months old so I definitely knew then something was wrong. Could anyone really notice when your child's spine was getting worse? Does anyone know if there is a benefit in waiting to do the MRI when a child is older? Does anyone know if there is more risk involved in having a six month old have general anesthesia for the MRI? Thanks for any advice you can offer. > , Emma's curve was 19. we were told by 2 docs to wait and she was 7 months old. One doctor said to do the mri just to make sure nothing was wrong structurally. In 2 months by the time we went to a shriners doc and got the mri, she was at 34 degrees and rotated. So I would not wait and see what happens. Emma had the mri at that age too and she did fine. good luck. aimee emma 13 months in second cast at greenville, sc Quote Link to comment Share on other sites More sharing options...
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