Young babies with scoliosis

[Guest guest]

I thought I would join your conversation because my daughter too is still young... She was diagnosed 3 months ago at 6 months of age with "positional scoliosis." Still not sure exactly what that term means... anyway... she has gotten 1 set of x-rays at 6 months and has seen an pediatric orthopedic surgeon. He looked at her x-rays and Kate and said her RVAD was 0 (which is rotation I think) and didn't even bother to measure her curve. He said she would self-resolve and to see us in 6 months. Our pediatrician and moms on this board have helped me see 6 months is too long to "wait and see" so we have been watching and waiting for 3 and go back next wednesday for another set of x-rays and a visit with the ortho. I guess I am hoping her curve is getting better or if nothing

more than staying the same and not progressing. Im not sure what to hope for. Since being diagnosed she is now rolling both ways, sitting independently and army crawling. We also went through the process of getting her physical therapy through First Steps, and that starts on Friday. THey say she has muscle imbalance in her back, which is causing her to curve. I suggest you both look into physical therapy through first steps, we are getting PT absolutely free, and it can only help her right? I feel that her curve is getting smaller, and is not even noticeable when laying down like it used to be, still noticiable when sitting though.... however it does seem to be better after we have done some stretching the initial PT showed us... THe wait and see part is very hard, but I think they dont usually start casting until 9 months of age anyways... so we are approaching that age and I

want to make sure we have the best plan for my little Kate... She turns 9 months on the 11th... I hope things go well with your little ones and you may want to look into PT(physical therapy) through First Steps! It's a great program to help out our little ones up to age 3! I will let you know how our second ortho appointment goes after our "wait and see" period! Praying for smaller curve!*~ (mom to Kate, 9 months old!)From: sarajstu <sarajstu@...>infantile scoliosis treatment Sent: Wed, June 8, 2011 10:04:33 PMSubject: Re: Good news? Bad news? SO confused!

Jen,

Thank you so much for writing. I will try these ideas. Elsa actually prefers her back to sleep but I think I can flip her over for a photo shoot. I hope you get in soon with an ortho and everything works out well for your sweet girl! I'm glad to hear from someone with a younger baby, their little bodies change so quickly I felt like not many people knew what it was like with such a little one. Although, I was just frustrated. I mean, how long do we wait to see if it resolves on its own before we decide that it is not resolving? ugh.

Thanks so much again!

I'll be working on the photos! -Sara

> > >

> > > I would start taking photos of lil Elsa's front including any uneeeven

> > > shoulders, uneven hips and the rib flare. I would also take pics of her

> > > back. The rib hump/rotation, uneven shoulders/hips. I would also take pics

> > > of her beautiful face and send them along to an experienced, ET/Mehta doc w/

> > > all relevant info.

> > >

> > > HTH's

> > >

> > > HRH

> > >

> > >

> > >

> > > From: infantile scoliosis treatment

> > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu

> > > Sent: Monday, May 30, 2011 7:56 AM

> > > infantile scoliosis treatment

> > > Subject: Good news? Bad news? SO confused!

> > >

> > >

> > >

> > >

> > >

> > > So, Elsa has this rib flare on one side, and she has recently developed a

> > > bulge on her lower back over the last month. Also, she spits up CONSTANTLY.

> > > I took her to see her pediatrician (since the Ortho said the absolute

> > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.

> > > rather than an MD and I trust her very much. The pediatrician said that the

> > > bulge could be a rotation of the spine and said the same for the ribs

> > > flaring on one side. She also found some esotropia (lazy eye) and said that

> > > this could be coming from her unbalanced back as well. Anyway- long story

> > > short-Elsa got another x-ray which the radiologist read as "no significant

> > > change" but didn't mention any rotation or anything else. So from 3/16 to

> > > 5/27 there is no significant change. I am not sure how to to attach the

> > > x-rays to this post, but I am confused because I (am certainly not a doctor,

> > > just an MA) feel that her lumbar spine is actually straighter but her

> > > thoracic spine looks more curved to me. Should I send these films to a

> > > Mehta-trained Doc to look at? I am apprehensive about sending them to her

> > > current Ortho since he said all he can do is brace her until she is old

> > > enough for surgery. ALso, is "no significant change" good news or bad news?

> > > Should it have gotten better by now if not worse?

> > >

> >

>

[Guest guest]

I have a little one too that just last month was confirmed she does have

scoliosis. She is now 8 months and has a 35 degree curve with a 38 degree RVAD.

We are in that wait and see period with our local doctor as well and it is so

hard! Everything I read is don't wait but then on the other hand I hear that

doctors don't cast until age 9 months - 1 year. We are going to Greenville in a

couple of weeks to get another opinion and see what treatment is best for our

little girl. I am so worried about her and it seems to me to be getting a lot

worse. I totally understad the agony of the unknown! Let me know how things go

for you.

> > > >

> > > > I would start taking photos of lil Elsa's front including any uneeeven

> > > > shoulders, uneven hips and the rib flare. I would also take pics of her

> > > > back. The rib hump/rotation, uneven shoulders/hips. I would also take

> >pics

> > > > of her beautiful face and send them along to an experienced, ET/Mehta

doc

> >w/

> > > > all relevant info.

> > > >

> > > > HTH's

> > > >

> > > > HRH

> > > >

> > > >

> > > >

> > > > From: infantile scoliosis treatment

> > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu

> > > > Sent: Monday, May 30, 2011 7:56 AM

> > > > infantile scoliosis treatment

> > > > Subject: Good news? Bad news? SO confused!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > So, Elsa has this rib flare on one side, and she has recently developed

a

> > > > bulge on her lower back over the last month. Also, she spits up

> CONSTANTLY.

> > > > I took her to see her pediatrician (since the Ortho said the absolute

> > > > soonest he could see her again would be 6/27). Her pediatrician in a

D.O.

> > > > rather than an MD and I trust her very much. The pediatrician said that

> the

> > > > bulge could be a rotation of the spine and said the same for the ribs

> > > > flaring on one side. She also found some esotropia (lazy eye) and said

> that

> > > > this could be coming from her unbalanced back as well. Anyway- long

story

> > > > short-Elsa got another x-ray which the radiologist read as " no

significant

> > > > change " but didn't mention any rotation or anything else. So from 3/16

to

> > > > 5/27 there is no significant change. I am not sure how to to attach the

> > > > x-rays to this post, but I am confused because I (am certainly not a

> >doctor,

> > > > just an MA) feel that her lumbar spine is actually straighter but her

> > > > thoracic spine looks more curved to me. Should I send these films to a

> > > > Mehta-trained Doc to look at? I am apprehensive about sending them to

her

> > > > current Ortho since he said all he can do is brace her until she is old

> > > > enough for surgery. ALso, is " no significant change " good news or bad

> news?

> > > > Should it have gotten better by now if not worse?

> > > >

> > >

> >

>

[Guest guest]

It's comforting to hear from others in my same situation. The waiting stinks!

I did just hear from 's pediatrician today and we have an appt at the Phoenix Children's Hospital for June 23rd.  Two weeks away ... that's not so bad. (Course I say that now one day ONE.  Let's see how patient I'm feeling in a few more days...)

[Guest guest]

We were in the exact same situation with our son and my best advice is to ask for an Xray, MRI and CT Scan because that is what Shriner's will want if you choose to apply. The entire approval process with Shriner's, the initial evaluation there and then the actual casting took about 4 1/2 months which was so long to wait. Jake was about 14 months when he got his 1st cast last October. It is so imperative to not let them talk you into bracing and the time that it wastes. We actually had Jake casted for a brace and then called Children's in Seattle and told them to not make it. Our orthopedist doctor thought we were pretty drastic casting until he saw him go from 50 degrees to 3 degrees in 7 months. He is now considering learning the Mehta method and

getting a table which is amazing!!Keep up the positive thoughts and know that we have been there and if you have any questions don't be afraid to ask!SonjaFrom: "caren339@..." <caren339@...>infantile scoliosis treatment Sent: Thu, June 9, 2011 5:43:26 PMSubject: Re: Young babies with scoliosis

I have a little one too that just last month was confirmed she does have scoliosis. She is now 8 months and has a 35 degree curve with a 38 degree RVAD. We are in that wait and see period with our local doctor as well and it is so hard! Everything I read is don't wait but then on the other hand I hear that doctors don't cast until age 9 months - 1 year. We are going to Greenville in a couple of weeks to get another opinion and see what treatment is best for our little girl. I am so worried about her and it seems to me to be getting a lot worse. I totally understad the agony of the unknown! Let me know how things go for you.

> > > >

> > > > I would start taking photos of lil Elsa's front including any uneeeven

> > > > shoulders, uneven hips and the rib flare. I would also take pics of her

> > > > back. The rib hump/rotation, uneven shoulders/hips. I would also take

> >pics

> > > > of her beautiful face and send them along to an experienced, ET/Mehta doc

> >w/

> > > > all relevant info.

> > > >

> > > > HTH's

> > > >

> > > > HRH

> > > >

> > > >

> > > >

> > > > From: infantile scoliosis treatment

> > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu

> > > > Sent: Monday, May 30, 2011 7:56 AM

> > > > infantile scoliosis treatment

> > > > Subject: Good news? Bad news? SO confused!

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > So, Elsa has this rib flare on one side, and she has recently developed a

> > > > bulge on her lower back over the last month. Also, she spits up

> CONSTANTLY.

> > > > I took her to see her pediatrician (since the Ortho said the absolute

> > > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.

> > > > rather than an MD and I trust her very much. The pediatrician said that

> the

> > > > bulge could be a rotation of the spine and said the same for the ribs

> > > > flaring on one side. She also found some esotropia (lazy eye) and said

> that

> > > > this could be coming from her unbalanced back as well. Anyway- long story

> > > > short-Elsa got another x-ray which the radiologist read as "no significant

> > > > change" but didn't mention any rotation or anything else. So from 3/16 to

> > > > 5/27 there is no significant change. I am not sure how to to attach the

> > > > x-rays to this post, but I am confused because I (am certainly not a

> >doctor,

> > > > just an MA) feel that her lumbar spine is actually straighter but her

> > > > thoracic spine looks more curved to me. Should I send these films to a

> > > > Mehta-trained Doc to look at? I am apprehensive about sending them to her

> > > > current Ortho since he said all he can do is brace her until she is old

> > > > enough for surgery. ALso, is "no significant change" good news or bad

> news?

> > > > Should it have gotten better by now if not worse?

> > > >

> > >

> >

>

[Guest guest]

The fear of the unknown is the WORST!!! Glad you are headed to SC! Pls keep us posted.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of caren339@...Sent: Thursday, June 09, 2011 6:43 PMinfantile scoliosis treatment Subject: Re: Young babies with scoliosis I have a little one too that just last month was confirmed she does have scoliosis. She is now 8 months and has a 35 degree curve with a 38 degree RVAD. We are in that wait and see period with our local doctor as well and it is so hard! Everything I read is don't wait but then on the other hand I hear that doctors don't cast until age 9 months - 1 year. We are going to Greenville in a couple of weeks to get another opinion and see what treatment is best for our little girl. I am so worried about her and it seems to me to be getting a lot worse. I totally understad the agony of the unknown! Let me know how things go for you. > > > >> > > > I would start taking photos of lil Elsa's front including any uneeeven> > > > shoulders, uneven hips and the rib flare. I would also take pics of her> > > > back. The rib hump/rotation, uneven shoulders/hips. I would also take > >pics> > > > of her beautiful face and send them along to an experienced, ET/Mehta doc > >w/> > > > all relevant info.> > > > > > > > HTH's> > > > > > > > HRH> > > > > > > > > > > > > > > > From: infantile scoliosis treatment > > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu> > > > Sent: Monday, May 30, 2011 7:56 AM> > > > infantile scoliosis treatment > > > > Subject: Good news? Bad news? SO confused!> > > > > > > > > > > > > > > > > > > > > > > > So, Elsa has this rib flare on one side, and she has recently developed a> > > > bulge on her lower back over the last month. Also, she spits up > CONSTANTLY.> > > > I took her to see her pediatrician (since the Ortho said the absolute> > > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.> > > > rather than an MD and I trust her very much. The pediatrician said that > the> > > > bulge could be a rotation of the spine and said the same for the ribs> > > > flaring on one side. She also found some esotropia (lazy eye) and said > that> > > > this could be coming from her unbalanced back as well. Anyway- long story> > > > short-Elsa got another x-ray which the radiologist read as " no significant> > > > change " but didn't mention any rotation or anything else. So from 3/16 to> > > > 5/27 there is no significant change. I am not sure how to to attach the> > > > x-rays to this post, but I am confused because I (am certainly not a > >doctor,> > > > just an MA) feel that her lumbar spine is actually straighter but her> > > > thoracic spine looks more curved to me. Should I send these films to a> > > > Mehta-trained Doc to look at? I am apprehensive about sending them to her> > > > current Ortho since he said all he can do is brace her until she is old> > > > enough for surgery. ALso, is " no significant change " good news or bad > news?> > > > Should it have gotten better by now if not worse?> > > >> > >> >>

[Guest guest]

Great news on all fronts Sonja!  Thanks for the update.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of Sonja EggerSent: Thursday, June 09, 2011 11:02 PMinfantile scoliosis treatment Subject: Re: Re: Young babies with scoliosis We were in the exact same situation with our son and my best advice is to ask for an Xray, MRI and CT Scan because that is what Shriner's will want if you choose to apply. The entire approval process with Shriner's, the initial evaluation there and then the actual casting took about 4 1/2 months which was so long to wait. Jake was about 14 months when he got his 1st cast last October. It is so imperative to not let them talk you into bracing and the time that it wastes. We actually had Jake casted for a brace and then called Children's in Seattle and told them to not make it. Our orthopedist doctor thought we were pretty drastic casting until he saw him go from 50 degrees to 3 degrees in 7 months. He is now considering learning the Mehta method and getting a table which is amazing!! Keep up the positive thoughts and know that we have been there and if you have any questions don't be afraid to ask!Sonja From: " caren339@... " <caren339@...>infantile scoliosis treatment Sent: Thu, June 9, 2011 5:43:26 PMSubject: Re: Young babies with scoliosis I have a little one too that just last month was confirmed she does have scoliosis. She is now 8 months and has a 35 degree curve with a 38 degree RVAD. We are in that wait and see period with our local doctor as well and it is so hard! Everything I read is don't wait but then on the other hand I hear that doctors don't cast until age 9 months - 1 year. We are going to Greenville in a couple of weeks to get another opinion and see what treatment is best for our little girl. I am so worried about her and it seems to me to be getting a lot worse. I totally understad the agony of the unknown! Let me know how things go for you. > > > >> > > > I would start taking photos of lil Elsa's front including any uneeeven> > > > shoulders, uneven hips and the rib flare. I would also take pics of her> > > > back. The rib hump/rotation, uneven shoulders/hips. I would also take > >pics> > > > of her beautiful face and send them along to an experienced, ET/Mehta doc > >w/> > > > all relevant info.> > > > > > > > HTH's> > > > > > > > HRH> > > > > > > > > > > > > > > > From: infantile scoliosis treatment > > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu> > > > Sent: Monday, May 30, 2011 7:56 AM> > > > infantile scoliosis treatment > > > > Subject: Good news? Bad news? SO confused!> > > > > > > > > > > > > > > > > > > > > > > > So, Elsa has this rib flare on one side, and she has recently developed a> > > > bulge on her lower back over the last month. Also, she spits up > CONSTANTLY.> > > > I took her to see her pediatrician (since the Ortho said the absolute> > > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.> > > > rather than an MD and I trust her very much. The pediatrician said that > the> > > > bulge could be a rotation of the spine and said the same for the ribs> > > > flaring on one side. She also found some esotropia (lazy eye) and said > that> > > > this could be coming from her unbalanced back as well. Anyway- long story> > > > short-Elsa got another x-ray which the radiologist read as " no significant> > > > change " but didn't mention any rotation or anything else. So from 3/16 to> > > > 5/27 there is no significant change. I am not sure how to to attach the> > > > x-rays to this post, but I am confused because I (am certainly not a > >doctor,> > > > just an MA) feel that her lumbar spine is actually straighter but her> > > > thoracic spine looks more curved to me. Should I send these films to a> > > > Mehta-trained Doc to look at? I am apprehensive about sending them to her> > > > current Ortho since he said all he can do is brace her until she is old> > > > enough for surgery. ALso, is " no significant change " good news or bad > news?> > > > Should it have gotten better by now if not worse?> > > >> > >> >>

[Guest guest]

Hi , my daughter Lucy is the same situation. She was measured at the highest 39 degrees and the latest 20 degrees. Her RVAD has been 0 except once when we really think one doctor she saw misdiagnosed. She appears to be steadily improving. She had a nasty bought of RSV and they think that made her curve worse. Hang in there. I know how you feel. The waiting is the worst. You want to make sure you are doing everything possible and not wasting any of these valuable growing months. We are in PT working on some skills because her curve has caused her to favor one hand and rolling one direction. We are going to start the Early Steps paperwork this week. (that's what they call it in Louisiana, but I think it is the same thing.). We were doing independent PT thru health insurance and it did help. While it may not help her curve, it will help her stay on track with her milestones and not star favoring one side like Lucy.Also, we talked to one doc when Lucy was 4.5 months and they said they will cast them that young in Cincinnati. They don't wait anymore. They said if she had a rotation they would have cast her that next day. I guess she was around 14 lbs at that time. I am not sure that is the same everywhere as I hear they modify the tables for the littlest ones.Good luck! Email me if you want to know more of our journey. We go back august 28 and hoping for more good news.Sent from my iPadOn Jun 9, 2011, at 10:56 AM, " Hyatt" <heather@...> wrote:

Welcome to CAST, !HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of RingholzSent: Thursday, June 09, 2011 7:36 AMinfantile scoliosis treatment Subject: Young babies with scoliosis I thought I would join your conversation because my daughter too is still young... She was diagnosed 3 months ago at 6 months of age with "positional scoliosis." Still not sure exactly what that term means... anyway... she has gotten 1 set of x-rays at 6 months and has seen an pediatric orthopedic surgeon. He looked at her x-rays and Kate and said her RVAD was 0 (which is rotation I think) and didn't even bother to measure her curve. He said she would self-resolve and to see us in 6 months. Our pediatrician and moms on this board have helped me see 6 months is too long to "wait and see" so we have been watching and waiting for 3 and go back next wednesday for another set of x-rays and a visit with the ortho. I guess I am hoping her curve is getting better or if nothing more than staying the same and not progressing. Im not sure what to hope for. Since being diagnosed she is now rolling both ways, sitting independently and army crawling. We also went through the process of getting her physical therapy through First Steps, and that starts on Friday. THey say she has muscle imbalance in her back, which is causing her to curve. I suggest you both look into physical therapy through first steps, we are getting PT absolutely free, and it can only help her right? I feel that her curve is getting smaller, and is not even noticeable when laying down like it used to be, still noticiable when sitting though.... however it does seem to be better after we have done some stretching the initial PT showed us... THe wait and see part is very hard, but I think they dont usually start casting until 9 months of age anyways... so we are approaching that age and I want to make sure we have the best plan for my little Kate... She turns 9 months on the 11th... I hope things go well with your little ones and you may want to look into PT(physical therapy) through First Steps! It's a great program to help out our little ones up to age 3! I will let you know how our second ortho appointment goes after our "wait and see" period! Praying for smaller curve!*~ (mom to Kate, 9 months old!) From: sarajstu <sarajstu@...>infantile scoliosis treatment Sent: Wed, June 8, 2011 10:04:33 PMSubject: Re: Good news? Bad news? SO confused! Jen, Thank you so much for writing. I will try these ideas. Elsa actually prefers her back to sleep but I think I can flip her over for a photo shoot. I hope you get in soon with an ortho and everything works out well for your sweet girl! I'm glad to hear from someone with a younger baby, their little bodies change so quickly I felt like not many people knew what it was like with such a little one. Although, I was just frustrated. I mean, how long do we wait to see if it resolves on its own before we decide that it is not resolving? ugh. Thanks so much again! I'll be working on the photos! -Sara > > >> > > I would start taking photos of lil Elsa's front including any uneeeven> > > shoulders, uneven hips and the rib flare. I would also take pics of her> > > back. The rib hump/rotation, uneven shoulders/hips. I would also take pics> > > of her beautiful face and send them along to an experienced, ET/Mehta doc w/> > > all relevant info.> > > > > > HTH's> > > > > > HRH> > > > > > > > > > > > From: infantile scoliosis treatment > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu> > > Sent: Monday, May 30, 2011 7:56 AM> > > infantile scoliosis treatment > > > Subject: Good news? Bad news? SO confused!> > > > > > > > > > > > > > > > > > So, Elsa has this rib flare on one side, and she has recently developed a> > > bulge on her lower back over the last month. Also, she spits up CONSTANTLY.> > > I took her to see her pediatrician (since the Ortho said the absolute> > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.> > > rather than an MD and I trust her very much. The pediatrician said that the> > > bulge could be a rotation of the spine and said the same for the ribs> > > flaring on one side. She also found some esotropia (lazy eye) and said that> > > this could be coming from her unbalanced back as well. Anyway- long story> > > short-Elsa got another x-ray which the radiologist read as "no significant> > > change" but didn't mention any rotation or anything else. So from 3/16 to> > > 5/27 there is no significant change. I am not sure how to to attach the> > > x-rays to this post, but I am confused because I (am certainly not a doctor,> > > just an MA) feel that her lumbar spine is actually straighter but her> > > thoracic spine looks more curved to me. Should I send these films to a> > > Mehta-trained Doc to look at? I am apprehensive about sending them to her> > > current Ortho since he said all he can do is brace her until she is old> > > enough for surgery. ALso, is "no significant change" good news or bad news?> > > Should it have gotten better by now if not worse?> > >> >>

[Guest guest]

I am so glad Lucy is self correcting!!! That is what Kate is doing too! She went back last Wednesday for her 2nd set of x-rays, which was roughly 3 months after her first set. The ortho said her curve has improved from 30* to only 10* this time! Her RVAD is still 0 or normal he said. He wants to see us back 2 months after she starts walking to x-ray again!We r also continuing PT, because Kate also has favored her right dude due to her curve. Her muscles on her right side are very tight and need to be stretched, where we need to strengthen the muscles on her left side! We are going to continue working on those goals, which can only help her curve go all the way to 0 I hope!It's do great to hear of other stories of self correcting! When I first joined this board 2 months ago I couldn't find one and was sad that it might not be possible for my daughter, but now I know it is! We are not completely clear, but I'm very hopeful for full correction!!!! It is possible, these kids are resilient!Thanks for sharing, let me know how things progress and good luck!~, mom to Kate 9 1/2 months, 30* down to 10*, self correctingSent from my iPhoneOn Jun 23, 2011, at 10:01 PM, <lucyrichmondsmom@...> wrote:

Hi , my daughter Lucy is the same situation. She was measured at the highest 39 degrees and the latest 20 degrees. Her RVAD has been 0 except once when we really think one doctor she saw misdiagnosed. She appears to be steadily improving. She had a nasty bought of RSV and they think that made her curve worse. Hang in there. I know how you feel. The waiting is the worst. You want to make sure you are doing everything possible and not wasting any of these valuable growing months. We are in PT working on some skills because her curve has caused her to favor one hand and rolling one direction. We are going to start the Early Steps paperwork this week. (that's what they call it in Louisiana, but I think it is the same thing.). We were doing independent PT thru health insurance and it did help. While it may not help her curve, it will help her stay on track with her milestones and not star favoring one side like Lucy.Also, we talked to one doc when Lucy was 4.5 months and they said they will cast them that young in Cincinnati. They don't wait anymore. They said if she had a rotation they would have cast her that next day. I guess she was around 14 lbs at that time. I am not sure that is the same everywhere as I hear they modify the tables for the littlest ones.Good luck! Email me if you want to know more of our journey. We go back august 28 and hoping for more good news.Sent from my iPadOn Jun 9, 2011, at 10:56 AM, " Hyatt" <heather@...> wrote:

Welcome to CAST, !HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of RingholzSent: Thursday, June 09, 2011 7:36 AMinfantile scoliosis treatment Subject: Young babies with scoliosis I thought I would join your conversation because my daughter too is still young... She was diagnosed 3 months ago at 6 months of age with "positional scoliosis." Still not sure exactly what that term means... anyway... she has gotten 1 set of x-rays at 6 months and has seen an pediatric orthopedic surgeon. He looked at her x-rays and Kate and said her RVAD was 0 (which is rotation I think) and didn't even bother to measure her curve. He said she would self-resolve and to see us in 6 months. Our pediatrician and moms on this board have helped me see 6 months is too long to "wait and see" so we have been watching and waiting for 3 and go back next wednesday for another set of x-rays and a visit with the ortho. I guess I am hoping her curve is getting better or if nothing more than staying the same and not progressing. Im not sure what to hope for. Since being diagnosed she is now rolling both ways, sitting independently and army crawling. We also went through the process of getting her physical therapy through First Steps, and that starts on Friday. THey say she has muscle imbalance in her back, which is causing her to curve. I suggest you both look into physical therapy through first steps, we are getting PT absolutely free, and it can only help her right? I feel that her curve is getting smaller, and is not even noticeable when laying down like it used to be, still noticiable when sitting though.... however it does seem to be better after we have done some stretching the initial PT showed us... THe wait and see part is very hard, but I think they dont usually start casting until 9 months of age anyways... so we are approaching that age and I want to make sure we have the best plan for my little Kate... She turns 9 months on the 11th... I hope things go well with your little ones and you may want to look into PT(physical therapy) through First Steps! It's a great program to help out our little ones up to age 3! I will let you know how our second ortho appointment goes after our "wait and see" period! Praying for smaller curve!*~ (mom to Kate, 9 months old!) From: sarajstu <sarajstu@...>infantile scoliosis treatment Sent: Wed, June 8, 2011 10:04:33 PMSubject: Re: Good news? Bad news? SO confused! Jen, Thank you so much for writing. I will try these ideas. Elsa actually prefers her back to sleep but I think I can flip her over for a photo shoot. I hope you get in soon with an ortho and everything works out well for your sweet girl! I'm glad to hear from someone with a younger baby, their little bodies change so quickly I felt like not many people knew what it was like with such a little one. Although, I was just frustrated. I mean, how long do we wait to see if it resolves on its own before we decide that it is not resolving? ugh. Thanks so much again! I'll be working on the photos! -Sara > > >> > > I would start taking photos of lil Elsa's front including any uneeeven> > > shoulders, uneven hips and the rib flare. I would also take pics of her> > > back. The rib hump/rotation, uneven shoulders/hips. I would also take pics> > > of her beautiful face and send them along to an experienced, ET/Mehta doc w/> > > all relevant info.> > > > > > HTH's> > > > > > HRH> > > > > > > > > > > > From: infantile scoliosis treatment > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu> > > Sent: Monday, May 30, 2011 7:56 AM> > > infantile scoliosis treatment > > > Subject: Good news? Bad news? SO confused!> > > > > > > > > > > > > > > > > > So, Elsa has this rib flare on one side, and she has recently developed a> > > bulge on her lower back over the last month. Also, she spits up CONSTANTLY.> > > I took her to see her pediatrician (since the Ortho said the absolute> > > soonest he could see her again would be 6/27). Her pediatrician in a D.O.> > > rather than an MD and I trust her very much. The pediatrician said that the> > > bulge could be a rotation of the spine and said the same for the ribs> > > flaring on one side. She also found some esotropia (lazy eye) and said that> > > this could be coming from her unbalanced back as well. Anyway- long story> > > short-Elsa got another x-ray which the radiologist read as "no significant> > > change" but didn't mention any rotation or anything else. So from 3/16 to> > > 5/27 there is no significant change. I am not sure how to to attach the> > > x-rays to this post, but I am confused because I (am certainly not a doctor,> > > just an MA) feel that her lumbar spine is actually straighter but her> > > thoracic spine looks more curved to me. Should I send these films to a> > > Mehta-trained Doc to look at? I am apprehensive about sending them to her> > > current Ortho since he said all he can do is brace her until she is old> > > enough for surgery. ALso, is "no significant change" good news or bad news?> > > Should it have gotten better by now if not worse?> > >> >>

[Guest guest]

Wow, that is FABULOUS! Congrats! It sounds like she is growing straight

on her own. Please keep us posted as we rarely get to hear about the self

resolving types and it really does happen! Great news! Enjoy!

HRH

> Hi , my daughter Lucy is the same situation. She was measured at

> the highest 39 degrees and the latest 20 degrees. Her RVAD has been 0

> except once when we really think one doctor she saw misdiagnosed. She

> appears to be steadily improving. She had a nasty bought of RSV and they

> think that made her curve worse.

>

> Hang in there. I know how you feel. The waiting is the worst. You want

> to make sure you are doing everything possible and not wasting any of

> these valuable growing months. We are in PT working on some skills

> because her curve has caused her to favor one hand and rolling one

> direction. We are going to start the Early Steps paperwork this week.

> (that's what they call it in Louisiana, but I think it is the same

> thing.). We were doing independent PT thru health insurance and it did

> help. While it may not help her curve, it will help her stay on track

> with her milestones and not star favoring one side like Lucy.

>

> Also, we talked to one doc when Lucy was 4.5 months and they said they

> will cast them that young in Cincinnati. They don't wait anymore. They

> said if she had a rotation they would have cast her that next day. I

> guess she was around 14 lbs at that time. I am not sure that is the same

> everywhere as I hear they modify the tables for the littlest ones.

>

> Good luck! Email me if you want to know more of our journey. We go back

> august 28 and hoping for more good news.

>

> Sent from my iPad

>

> On Jun 9, 2011, at 10:56 AM, " Hyatt "

> <heather@...> wrote:

>

>> Welcome to CAST, !

>>

>> HRH

>>

>>

>>

>> From: infantile scoliosis treatment

>> [mailto:infantile scoliosis treatment ] On Behalf Of

>> Ringholz

>> Sent: Thursday, June 09, 2011 7:36 AM

>> infantile scoliosis treatment

>> Subject: Young babies with scoliosis

>>

>>

>>

>>

>>

>> I thought I would join your conversation because my daughter too is

>> still young... She was diagnosed 3 months ago at 6 months of age with

>> " positional scoliosis. " Still not sure exactly what that term means...

>> anyway... she has gotten 1 set of x-rays at 6 months and has seen an

>> pediatric orthopedic surgeon. He looked at her x-rays and Kate and said

>> her RVAD was 0 (which is rotation I think) and didn't even bother to

>> measure her curve. He said she would self-resolve and to see us in 6

>> months. Our pediatrician and moms on this board have helped me see 6

>> months is too long to " wait and see " so we have been watching and

>> waiting for 3 and go back next wednesday for another set of x-rays and a

>> visit with the ortho. I guess I am hoping her curve is getting better

>> or if nothing more than staying the same and not progressing. Im not

>> sure what to hope for.

>> Since being diagnosed she is now rolling both ways, sitting

>> independently and army crawling. We also went through the process of

>> getting her physical therapy through First Steps, and that starts on

>> Friday. THey say she has muscle imbalance in her back, which is

>> causing her to curve. I suggest you both look into physical therapy

>> through first steps, we are getting PT absolutely free, and it can

>> only help her right?

>> I feel that her curve is getting smaller, and is not even noticeable

>> when laying down like it used to be, still noticiable when sitting

>> though.... however it does seem to be better after we have done some

>> stretching the initial PT showed us...

>>

>> THe wait and see part is very hard, but I think they dont usually

>> start casting until 9 months of age anyways... so we are approaching

>> that age and I want to make sure we have the best plan for my little

>> Kate... She turns 9 months on the 11th... I hope things go well with

>> your little ones and you may want to look into PT(physical therapy)

>> through First Steps! It's a great program to help out our little ones

>> up to age 3! I will let you know how our second ortho appointment

>> goes after our " wait and see " period! Praying for smaller curve!

>>

>> *~ (mom to Kate, 9 months old!)

>>

>>

>>

>>

>>

>> From: sarajstu <sarajstu@...>

>> infantile scoliosis treatment

>> Sent: Wed, June 8, 2011 10:04:33 PM

>> Subject: Re: Good news? Bad news? SO confused!

>>

>>

>>

>> Jen,

>> Thank you so much for writing. I will try these ideas. Elsa actually

>> prefers her back to sleep but I think I can flip her over for a photo

>> shoot. I hope you get in soon with an ortho and everything works out

>> well for your sweet girl! I'm glad to hear from someone with a younger

>> baby, their little bodies change so quickly I felt like not many people

>> knew what it was like with such a little one. Although, I was just

>> frustrated. I mean, how long do we wait to see if it resolves on its own

>> before we decide that it is not resolving? ugh.

>> Thanks so much again!

>>

>> I'll be working on the photos! -Sara

>>

>>

>> > > >

>> > > > I would start taking photos of lil Elsa's front including any

>> uneeeven

>> > > > shoulders, uneven hips and the rib flare. I would also take pics

>> of her

>> > > > back. The rib hump/rotation, uneven shoulders/hips. I would also

>> take pics

>> > > > of her beautiful face and send them along to an experienced,

>> ET/Mehta doc w/

>> > > > all relevant info.

>> > > >

>> > > > HTH's

>> > > >

>> > > > HRH

>> > > >

>> > > >

>> > > >

>> > > > From: infantile scoliosis treatment

>> > > > [mailto:infantile scoliosis treatment ] On Behalf Of sarajstu

>> > > > Sent: Monday, May 30, 2011 7:56 AM

>> > > > infantile scoliosis treatment

>> > > > Subject: Good news? Bad news? SO confused!

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

>> > > > So, Elsa has this rib flare on one side, and she has recently

>> developed a

>> > > > bulge on her lower back over the last month. Also, she spits up

>> CONSTANTLY.

>> > > > I took her to see her pediatrician (since the Ortho said the

>> absolute

>> > > > soonest he could see her again would be 6/27). Her pediatrician in

>> a D.O.

>> > > > rather than an MD and I trust her very much. The pediatrician said

>> that the

>> > > > bulge could be a rotation of the spine and said the same for the

>> ribs

>> > > > flaring on one side. She also found some esotropia (lazy eye) and

>> said that

>> > > > this could be coming from her unbalanced back as well. Anyway-

>> long story

>> > > > short-Elsa got another x-ray which the radiologist read as " no

>> significant

>> > > > change " but didn't mention any rotation or anything else. So from

>> 3/16 to

>> > > > 5/27 there is no significant change. I am not sure how to to

>> attach the

>> > > > x-rays to this post, but I am confused because I (am certainly not

>> a doctor,

>> > > > just an MA) feel that her lumbar spine is actually straighter but

>> her

>> > > > thoracic spine looks more curved to me. Should I send these films

>> to a

>> > > > Mehta-trained Doc to look at? I am apprehensive about sending them

>> to her

>> > > > current Ortho since he said all he can do is brace her until she

>> is old

>> > > > enough for surgery. ALso, is " no significant change " good news or

>> bad news?

>> > > > Should it have gotten better by now if not worse?

>> > > >

>> > >

>> >

>>

>>

>>

>