Re: Re: back from Rochester- no change again

[Guest guest]

Oh thank you so much! I can not adequately tell you how much better you made me feel I have read and reread your post! I feel just like you. He did seem to be grasping at straws and I am the kind of person who will not sleep now! When my husband called his parents (his father is a doctor) they told us the same thing as you. I told our ortho before we left, "I think his back looks great and we are doing the right thing. In regards to a genetisist, you don't feel I need to do that 'right away'" He said, "Oh no." I said, "Good because I can not handle that right now."

Again, thank you. You have helped me more than you know!!!!!!

Jill

Subject: Re: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 9:34 AM

Hi Jill,I just wanted to say that I agree with you that seeing a genetisist seems like a bit of overkill to me. I mean, just because the number has been stuck at 16? I've heard of other kids, my son included, who stayed at a particular number for a while (while braced or casted). I don't think it's that unusual. Maybe your son hasn't had a big growth spurt during this time?By the way, my son did see a genetisist. He was diagnosed before age 2 with a significant curve - and at that time (several years ago) I followed by orthos suggestion to see a genetisist. They turned up nothing. I think your doctor is probably just frustrated and/or grasping at straws.Just my two cents.By the way, several of these kids I mentioned above - after being stuck at a particular number for a while - DID then see some further improvement. Of coures, there are no guarantees, but I surely

wouldn't give up hope of that happening. And even if, worst case scenario, the number stays around 16 - say, with bracing in the future - that's not so bad. I recall our doctor once telling me that he likes to see curves at least get under 20 degrees because, according to him, they have a lesser chance of progressing later on than those above 20 degrees.Most importantly, you say your son's back looks great and he's otherwise healthy!! And those truly are the most important things.Hope this helps.>> Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it

four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we should> see a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. > His back to

the naked eye is beautiful. When asked to bend over it looks so straight!> We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . > What do you all think of all of this? Thank you for all the support. > Jill and >

[Guest guest]

Hi Jill,I totally agree with !And I also sent you an email directly.Hang in there!TashaMommy of twin boys- and 3 1/2 years oldFort Worth, Texas is currently in a brace at night.Casting 14 months.

From: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 9:34 AM

Hi Jill,I just wanted to say that I agree with you that seeing a genetisist seems like a bit of overkill to me. I mean, just because the number has been stuck at 16? I've heard of other kids, my son included, who stayed at a particular number for a while (while braced or casted). I don't think it's that unusual. Maybe your son hasn't had a big growth spurt during this time?By the way, my son did see a genetisist. He was diagnosed before age 2 with a significant curve - and at that time (several years ago) I followed by orthos suggestion to see a genetisist. They turned up nothing. I think your doctor is probably just frustrated and/or grasping at straws.Just my two cents.By the way, several of these kids I mentioned above - after being stuck at a particular number for a while - DID then see some further improvement. Of coures, there are no guarantees, but I surely

wouldn't give up hope of that happening. And even if, worst case scenario, the number stays around 16 - say, with bracing in the future - that's not so bad. I recall our doctor once telling me that he likes to see curves at least get under 20 degrees because, according to him, they have a lesser chance of progressing later on than those above 20 degrees.Most importantly, you say your son's back looks great and he's otherwise healthy!! And those truly are the most important things.Hope this helps.>> Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it

four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we should> see a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. > His back to

the naked eye is beautiful. When asked to bend over it looks so straight!> We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . > What do you all think of all of this? Thank you for all the support. > Jill and >

[Guest guest]

Thanks for your support . Taking it one day at a time is good advice. I get overwhelmed thinking of all the different scenerios. I need to enjoy right now!

Thank you!

Jill

Subject: Re: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 11:06 AM

Jill,I'm so sorry, I can't imagine the frustration you're feeling rightnow. But, as others have mentioned, the important thing is that yoursweet boy is otherwise healthy and looking good! I don't blame youone bit for wanting to wait to see a geneticist, it is so hard to seeyour baby poked for what seems like no reason. It sounds like youhave a good plan in place for the next few months...just keep takingit one day at a time! I'm new here to this group, but I can't tellyou how much the support has meant to me so far!Hugs,>> Hi everyone. Well I am not sure where to start. We are back fromour latest cast change. had his last cast on for just over 3months. We had been stuck at 16 degrees for the past

3 cast, now makeit four. The xrays (supine) looked so good to me. I was sure we wereclose to 10 degrees. I could barely contain myself, then the doctorpulled up the xray on his computer and started measuring it with a newprogram (as opposed to with protractor, ruler and pencil as heusually does.) Guess the number that came up...16. He said bytweaking and moving the lines a bit he got anywhere from 11 or 12 to18 or 19. Our doctor knows our frustration and can't explain why weare not getting more of a change. In the past he has said, "I thinkwe can fix this, especially because it is clear has no otherunderlying syndromes... " Well this time it was almost as if he wastrying to help explain the lack of progress he threw out there maybewe should> see a geneticist. I may be in denial, but I feel that isunnecessary. I do not want my baby to be poked or prodded any morethan needed. > His

back to the naked eye is beautiful. When asked to bend over itlooks so straight!> We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for thesummer. What do you all think of this? I have cried until I am outof tears due to frustration and exhaustion. I know is healthyand happy and that the casts have made a difference in his life. Thedoctor almost sounded as if he is giving up on curing . > What do you all think of all of this? Thank you for all the support. > Jill and >

[Guest guest]

you totally rock! Thanks so much for your insights. I will hold tight to them and try to stay positive.

Thank you, thank you!

Jill

Subject: Re: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 5:09 PM

Hi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast

on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we

should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>

[Guest guest]

Hi Jill,

Just wanted to let you know the Sophia was "stuck" at 19-20 degrees for four casts, then on the final one (the doc was moving to a brace since we weren't getting anymore correction and she was hitting 2yrs old and her growth would be slowing down), we got to 11 and then 7 in the extra one after that. So don't give up- and the brace could get you lower too if you end up going to brace at 16 degrees. Anything under 20 is a success!!

Also wanted to let you know that we took Sophia to a genetics specialist because she also had low muscle tone, GI problems (reflux, gastric delay emptying, etc.) and they thought they might be connected to an underlying syndrome. I let them take blood, urine and do an EMG and they tested for any and everything you could with that and all came back normal! I would go with your gut on the testing and if he is going great, then why put him and you through it? Hang in there.

Tina

Re: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 5:09 PM

Hi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>

[Guest guest]

Wow that is great to know and sooooo encouraging. I thank you from the bottom of my heart! We have been stuck for the past 4 casts too so maybe this will be our lucky cast like you! You all have helped me to keep the hope alive! Who knows, maybe I will sleep tonight after all!

In regards to the genetic specialist, I am feeling like I can't justify it right now. If I truly thought it would help I wouldn't hesitate. A question for you... what exactly is "low muscle tone" and how did you know Sophia had it?

I really appreciate your sharing!

Jill

From: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PM

Hi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast

on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we

should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and >

>>

[Guest guest]

You crack me up! Thanks so much. I will try to get some shut eye! You do the same.

Jill

Subject: Re: back from Rochester- no change againTo: infantile_scoliosis Date: Wednesday, December 3, 2008, 10:15 PM

Hi Jill,Glad you're feeling better about things already!The thing about the genetisist and why, if it were me, I would not pursue it at this point is the reason (or LACK thereof) that your doctor gave you - just because the number is "stuck" - that happens all the time as Tina just pointed out. If he had a bunch of good reasons, then maybe I'd consider it. But to put your child through that JUST because there has been "no change" doesn't make any sense to me.Let me put it another way - if every child who was "stuck" at a number (either in a cast or a brace) went to see a genetisist, that would be an AWFUL lot of kids :-)Sleep well tonight, Jill.Best regards,> > >> > > Hi everyone. Well I am not sure where to start. We are back from > > our latest cast change. had his last cast on for just over 3 > > months. We had been stuck at 16 degrees for the past 3 cast, now > > make it four. The xrays (supine) looked so good to me. I was sure > > we were close to 10 degrees. I could barely contain myself, then > the > > doctor pulled up the xray on his computer and started measuring it > > with a new program (as opposed to with protractor, ruler and pencil

> > as he usually does.) Guess the number that came up...16. He said by > > tweaking and moving the lines a bit he got anywhere from 11 or 12 > to > > 18 or 19. Our doctor knows our frustration and can't explain why we > > are not getting more of a change. In the past he has said, "I think > > we can fix this, especially because it is clear has no other > > underlying syndromes... " Well this time it was almost as if he was > > trying to help explain the lack of progress he threw out there > maybe > > we should> > > see a geneticist. I may be in denial, but I feel that is > > unnecessary. I do not want my baby to be poked or prodded any more > > than needed. > > > His back to the naked eye is beautiful. When asked to bend over > it > > looks so straight!> > > We

are going to try another cast until March (when turns 3). > > We may even do one more after that and then go for a brace for the > > summer. What do you all think of this? I have cried until I am out > > of tears due to frustration and exhaustion. I know is healthy > > and happy and that the casts have made a difference in his life. > The > > doctor almost sounded as if he is giving up on curing . > > > What do you all think of all of this? Thank you for all the > > support. > > > Jill and > > >> >>

[Guest guest]

Hey Jill!

For some reason I missed your first post, but I think I get the idea about what is going on now.... Noelle did see a geneticist a while back at her Neuro's suggestion and they came up with nothing in preliminary tests..... It would probably be the same for , too. I think these docs like to cover all the areas to rule out anything "just in case", but I agree that you have time to wait. I think "our" doc was just dotting his "i"s on this one and he clearly doesn't think it's urgent. I would wait and see how he continues to do. 16 degrees is very respectable and not life altering.... Even if you start bracing, you may continue to see improvement with that over time. I am so sorry that you didn't get any improvement in the numbers, but if his back is looking great then you are probably getting improvement in his overall alignment, etc. And that is something!!!! Hugs to you!

If you are like me, you have the "mommy casting blues" and it will take about a week to get back in psync.... I'm here for you!!! Steph

From: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 9:34 AM

Hi Jill,I just wanted to say that I agree with you that seeing a genetisist seems like a bit of overkill to me. I mean, just because the number has been stuck at 16? I've heard of other kids, my son included, who stayed at a particular number for a while (while braced or casted). I don't think it's that unusual. Maybe your son hasn't had a big growth spurt during this time?By the way, my son did see a genetisist. He was diagnosed before age 2 with a significant curve - and at that time (several years ago) I followed by orthos suggestion to see a genetisist. They turned up nothing. I think your doctor is probably just frustrated and/or grasping at straws.Just my two cents.By the way, several of these kids I mentioned above - after being stuck at a particular number for a while - DID then see some further improvement. Of coures, there are no guarantees, but I surely

wouldn't give up hope of that happening. And even if, worst case scenario, the number stays around 16 - say, with bracing in the future - that's not so bad. I recall our doctor once telling me that he likes to see curves at least get under 20 degrees because, according to him, they have a lesser chance of progressing later on than those above 20 degrees.Most importantly, you say your son's back looks great and he's otherwise healthy!! And those truly are the most important things.Hope this helps.>> Hi everyone. Well I am not sure where to start. We are back from our latest cast change. had his last cast on for just over 3 months. We had been stuck at 16 degrees for the past 3 cast, now make it

four. The xrays (supine) looked so good to me. I was sure we were close to 10 degrees. I could barely contain myself, then the doctor pulled up the xray on his computer and started measuring it with a new program (as opposed to with protractor, ruler and pencil as he usually does.) Guess the number that came up...16. He said by tweaking and moving the lines a bit he got anywhere from 11 or 12 to 18 or 19. Our doctor knows our frustration and can't explain why we are not getting more of a change. In the past he has said, "I think we can fix this, especially because it is clear has no other underlying syndromes... " Well this time it was almost as if he was trying to help explain the lack of progress he threw out there maybe we should> see a geneticist. I may be in denial, but I feel that is unnecessary. I do not want my baby to be poked or prodded any more than needed. > His back to

the naked eye is beautiful. When asked to bend over it looks so straight!> We are going to try another cast until March (when turns 3). We may even do one more after that and then go for a brace for the summer. What do you all think of this? I have cried until I am out of tears due to frustration and exhaustion. I know is healthy and happy and that the casts have made a difference in his life. The doctor almost sounded as if he is giving up on curing . > What do you all think of all of this? Thank you for all the support. > Jill and >

[Guest guest]

Jill,

Noelle has generalized mild hypotonia and some ligament laxity as well..... Her neuro says this is not uncommon for our children's age range and most do outgrow it. Noelle is having an appointment with a cardiologist for an EKG to rule out an underlying connective tissue disease.... The least invasive of all the tests and it doesn't hurt. We all expect it to be normal and if it is..... Then I'm done with looking for the needle in the haystack!!! LOL Steph

From: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PM

Hi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast

on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we

should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and >

>>

[Guest guest]

When Sophia was a baby, we called her jello baby because she couldn't even be propted up without flopping over. Her pediatritian is who officially called it hypotonic, or low muscle tone. We have been working with PT and OT for over a year and I can't tell a difference now compared to her peers, but they say she is still low tone just not as severe and with improved muscle strength. Thanks!Sent from my Verizon Wireless BlackBerryFrom: jill wienke Date: Wed, 3 Dec 2008 18:27:54 -0800 (PST)To: <infantile_scoliosis >Subject: Re: Re: back from Rochester- no change again Wow that is great to know and sooooo encouraging. I thank you from the bottom of my heart! We have been stuck for the past 4 casts too so maybe this will be our lucky cast like you! You all have helped me to keep the hope alive! Who knows, maybe I will sleep tonight after all! In regards to the genetic specialist, I am feeling like I can't justify it right now. If I truly thought it would help I wouldn't hesitate. A question for you... what exactly is "low muscle tone" and how did you know Sophia had it? I really appreciate your sharing!JillFrom: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PMHi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>

[Guest guest]

When Sophia was a baby, we called her jello baby because she couldn't even be propted up without flopping over. Her pediatritian is who officially called it hypotonic, or low muscle tone. We have been working with PT and OT for over a year and I can't tell a difference now compared to her peers, but they say she is still low tone just not as severe and with improved muscle strength. Thanks!Sent from my Verizon Wireless BlackBerryFrom: jill wienke Date: Wed, 3 Dec 2008 18:27:54 -0800 (PST)To: <infantile_scoliosis >Subject: Re: Re: back from Rochester- no change again Wow that is great to know and sooooo encouraging. I thank you from the bottom of my heart! We have been stuck for the past 4 casts too so maybe this will be our lucky cast like you! You all have helped me to keep the hope alive! Who knows, maybe I will sleep tonight after all! In regards to the genetic specialist, I am feeling like I can't justify it right now. If I truly thought it would help I wouldn't hesitate. A question for you... what exactly is "low muscle tone" and how did you know Sophia had it? I really appreciate your sharing!JillFrom: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PMHi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>

[Guest guest]

Ditto with Sophia. Her heart tests were normal. So she has a little low tone and loose ligaments, could be much worse!Sent from my Verizon Wireless BlackBerryFrom: Kauffunger Date: Wed, 3 Dec 2008 20:25:35 -0800 (PST)To: <infantile_scoliosis >Subject: Re: Re: back from Rochester- no change again Jill,Noelle has generalized mild hypotonia and some ligament laxity as well..... Her neuro says this is not uncommon for our children's age range and most do outgrow it. Noelle is having an appointment with a cardiologist for an EKG to rule out an underlying connective tissue disease.... The least invasive of all the tests and it doesn't hurt. We all expect it to be normal and if it is..... Then I'm done with looking for the needle in the haystack!!! LOL StephFrom: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PMHi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>

[Guest guest]

Ditto with Sophia. Her heart tests were normal. So she has a little low tone and loose ligaments, could be much worse!Sent from my Verizon Wireless BlackBerryFrom: Kauffunger Date: Wed, 3 Dec 2008 20:25:35 -0800 (PST)To: <infantile_scoliosis >Subject: Re: Re: back from Rochester- no change again Jill,Noelle has generalized mild hypotonia and some ligament laxity as well..... Her neuro says this is not uncommon for our children's age range and most do outgrow it. Noelle is having an appointment with a cardiologist for an EKG to rule out an underlying connective tissue disease.... The least invasive of all the tests and it doesn't hurt. We all expect it to be normal and if it is..... Then I'm done with looking for the needle in the haystack!!! LOL StephFrom: <mariaf305yahoo (DOT) com>Subject: [infantile_scoliosi s] Re: back from Rochester- no change againTo: infantile_scoliosis @yahoogroups. comDate: Wednesday, December 3, 2008, 5:09 PMHi Jill,When you said you could not sleep, now I know we think alike - LOL!I guess it's part of parenthood - but I suspect that after a few days, the more you think about things the better you will feel. Remember, just because someone says "you might want to see a genetisist" does NOT mean that there is ANYTHING wrong (my son is proof of that!)In the meantime, enjoy the fact that your son's curve is stable and his back looks so good!Best regards,> >> > Hi everyone. Well I am not sure where to start. We are back from > our latest cast change. had his last cast on for just over 3 > months. We had been stuck at 16 degrees for the past 3 cast, now > make it four. The xrays (supine) looked so good to me. I was sure > we were close to 10 degrees. I could barely contain myself, then the > doctor pulled up the xray on his computer and started measuring it > with a new program (as opposed to with protractor, ruler and pencil > as he usually does.) Guess the number that came up...16. He said by > tweaking and moving the lines a bit he got anywhere from 11 or 12 to > 18 or 19. Our doctor knows our frustration and can't explain why we > are not getting more of a change. In the past he has said, "I think > we can fix this, especially because it is clear has no other > underlying syndromes... " Well this time it was almost as if he was > trying to help explain the lack of progress he threw out there maybe > we should> > see a geneticist. I may be in denial, but I feel that is > unnecessary. I do not want my baby to be poked or prodded any more > than needed. > > His back to the naked eye is beautiful. When asked to bend over it > looks so straight!> > We are going to try another cast until March (when turns 3). > We may even do one more after that and then go for a brace for the > summer. What do you all think of this? I have cried until I am out > of tears due to frustration and exhaustion. I know is healthy > and happy and that the casts have made a difference in his life. The > doctor almost sounded as if he is giving up on curing . > > What do you all think of all of this? Thank you for all the > support. > > Jill and > >>