Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 , You totally read my mind! I was thinking of asking them to try to start an iv with him awake so he won't be so dehydrated since he won't take ANY clears at all, not even a popsickle. ly, I'm a bit angry that they won't do a 45 minute cast on a 2 yr old before a 4 hr spinal surgery but what do I know? Thanks for the tip! Xoxo, heather@... wrote: >Any patient that must fast all night, then all day the next day prior to >late afternoon anesthesia may benefit from IV for fluids prior to the >procedure. It would help so much with anesthesia recovery....Although, I >know its hard for little ones to be hooked up to IV.....Tough call...But, >Ive seen this happen with my daughter multiple times. The more dehydrated >she is prior to anesthesia, the more difficult her recovery....Food for >thought. Every one is different I know, but thats what I have seen with >my own child over the last decade. >HRH > >> , >> >> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One >> pm is >> around the same time we had for Bex last cast- one or 1:30...and he didn't >> go >> until 3:30! I asked and they said next time to call before coming that >> morning >> and ask if the OR is running on time. That's never happened to us before, >> it was >> an extreme circumstance with a complicated surgery that day...but still. >> It is >> not fun to see your kiddo hungry and not be able to give them milk! I say >> demand >> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you >> and I >> am really dying to hear good news. Bex went up a half shoe size. Is Isaiah >> growing taller in this one? >>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >> Shriners, >> currently down from 62 degrees to 19.7 in cast) >> >> >> >> >> >> ________________________________ >> From: <missikay10@...> >> infantile scoliosis treatment >> Sent: Fri, July 23, 2010 5:45:50 PM >> Subject: Re: New here >> >>  >> Heidi, >> Have I told you lately how great you are in responding and giving great >> advice? >> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a >> rough >> day for sure. Just wanted to give you kuddos on your responses! >> >> Xoxo, >> >> >> NIck Guthe <nickguthe@...> wrote: >> >>>Hi , welcome to CAST! >>> >>>36 degrees, is that in a lying down X-ray? Standing is more accurate, >>> and will >>>likely be higher. 36 is already pretty high. My advice is also not to >>> wait to >>>apply to Shriners. Chicago is a terrific center for this method, many >>> families >>>love it there! I am sure some will respond soon. Watch and wait or wait >>> and see >> >>>is the wrong approach to take, unfortunately, and is the norm to hear >>> from most >> >>>doctors. The very best chance for correction and avoiding multiple spinal >>>surgeries down the line is a properly applied series of casts done on the >>>derotational, 3 dimensional table, as Chicago does. A regular Risser cast >>> will >>>not have the same chance at correction, that is likely the kind your >>> current >>>doctor referred to (?) >>> >>>The best time to begin tretment is under age 2 and under 50-60 degrees. >>> Truly >>>the sooner, the better, these casts correct along with your child's >>> natural >>>growth spurts, and you do not want to miss one, as that can allow the >>> condition >> >>>to progress fast. Even weeks and certainly months can make a huge >>> differerence >>>in the length of treatment needed. The surgeries are not easy at all, are >>> much >>>more invasive, and can have many complications. >>> >>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>non-surgical. At the least, it will postpone surgery for as long as >>> possible, >>>while bracing often does not even hold the curve in progressive cases. >>> If you >>>opt for bracing, the window of correction with proper casting can be >>> lost, in >>>some cases making surgery necessary very young, as young as 2 or 3, every >>> 6 >>>months or sooner. It has more than a 100 percent complication rate. >>> >>>Parents of children with low muscle tone will know more about that, but >>> they are >>> >>>here for sure, you can also search for it in older posts on this group. >>> Casting >> >>>is hard at first, but very do-able! >>> >>>Congratulations on adopting Kiya, you are in the right place to do the >>> very best >>> >>>thing for your precious child! >>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>> Shriners, >>>currently down from 62 degrees to 19.7 in cast) >>> >>> >>> >>> >>> >>>________________________________ >>>From: cjustl <cjustl@...> >>>infantile scoliosis treatment >>>Sent: Fri, July 23, 2010 12:15:28 PM >>>Subject: New here >>> >>> >>>Hi! >>> >>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 >>> months >>> >>>old next week. She was diagnosed with moderate scoliosis in June of this >>> year. >>>She has had an MRI that came back normal (thank goodness). We are seeing >>> a >>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>> months and >> >>>decide from there. He mentioned the Boston brace and possibly body >>> casting but >>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>> >>> >>>After much research on my own, I read about Mehta casting. I don't even >>> know if >> >>>my daughter would qualify for this type of cast. We are looking into >>> applying at >>> >>>Shriner's hospital in Chicago. >>> >>>We adopted my daughter from Ethiopia last year. She came home at just >>> under 6 >>>months of age with very low muscle tone. She is yet to walk independently >>> but is >>> >>>getting close. We have her in PT and are looking to qualify for Early >>>intervention in our state. We worry about not doing anything and it >>> getting a >>>lot worse and we worry that casting will hold her back devleopment wise. >>> So much >>> >>>to decide.... >>> >>>We are hoping to gain insight, info and support as we navigate this >>> process for >> >>>our daughter. >>> >>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's in >>>Chicago? Advice as we start that process? >>> >>> >>>mom, to Kiya, 20 months >>> >>> >>> >>> >>> >>> >> >> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Hi Jane, He's second that day an they will not allow any food/milk etc. After midnight but he can have clears in the morning. Trouble is he won't drink anything clear at all. Nothing. So he ends up so dehydrated. I'm going to beg they work him in first before the 4 hr surgery scheduled before him espically since those tend to run over which will push us back even further. Wish me luck! Jane Bigler <janemhar@...> wrote: >, can you call the day before and see what # he is? I know they'll let >Grace have clear fluids by mouth up to 2 hours prior to sedation. If you knew >he was going to be #4 and later in the day, they should be adjusting his input >restrictions accordingly. I know they sometimes don't tell you, but I ask now, >and will in the future because of our 17 hour day for Grace's 2nd cast  > > >Honestly, I agree, it is a personal decision each parent has to make about the >iv before sedation. I personally couldn't do that to Grace. She does >wonderfully with everything just as they currently do it and I wouldn't want to >make it any rougher on her than I have to.  Something additional to think about, >they may NOT do it before the procedure, unless he is already showing signs of >dehydration. But IDK, i'm sure every facility is different. > >Jane > > > > >________________________________ >From: <missikay10@...> >infantile scoliosis treatment >Sent: Mon, July 26, 2010 3:56:50 PM >Subject: Re: anesthesia > > >, >You totally read my mind! I was thinking of asking them to try to start an iv >with him awake so he won't be so dehydrated since he won't take ANY clears at >all, not even a popsickle. ly, I'm a bit angry that they won't do a 45 >minute cast on a 2 yr old before a 4 hr spinal surgery but what do I know? > > >Thanks for the tip! >Xoxo, > > >heather@... wrote: > >>Any patient that must fast all night, then all day the next day prior to >>late afternoon anesthesia may benefit from IV for fluids prior to the >>procedure. It would help so much with anesthesia recovery....Although, I >>know its hard for little ones to be hooked up to IV.....Tough call...But, >>Ive seen this happen with my daughter multiple times. The more dehydrated >>she is prior to anesthesia, the more difficult her recovery....Food for >>thought. Every one is different I know, but thats what I have seen with >>my own child over the last decade. >>HRH >> >>> , >>> >>> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One >>> pm is >>> around the same time we had for Bex last cast- one or 1:30...and he didn't >>> go >>> until 3:30! I asked and they said next time to call before coming that >>> morning >>> and ask if the OR is running on time. That's never happened to us before, >>> it was >>> an extreme circumstance with a complicated surgery that day...but still. >>> It is >>> not fun to see your kiddo hungry and not be able to give them milk! I say >>> demand >>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you >>> and I >>> am really dying to hear good news. Bex went up a half shoe size. Is Isaiah >>> growing taller in this one? >>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>> Shriners, >>> currently down from 62 degrees to 19.7 in cast) >>> >>> >>> >>> >>> >>> ________________________________ >>> From: <missikay10@...> >>> infantile scoliosis treatment >>> Sent: Fri, July 23, 2010 5:45:50 PM >>> Subject: Re: New here >>> >>>  >>> Heidi, >>> Have I told you lately how great you are in responding and giving great >>> advice? >>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a >>> rough >>> day for sure. Just wanted to give you kuddos on your responses! >>> >>> Xoxo, >>> >>> >>> NIck Guthe <nickguthe@...> wrote: >>> >>>>Hi , welcome to CAST! >>>> >>>>36 degrees, is that in a lying down X-ray? Standing is more accurate, >>>> and will >>>>likely be higher. 36 is already pretty high. My advice is also not to >>>> wait to >>>>apply to Shriners. Chicago is a terrific center for this method, many >>>> families >>>>love it there! I am sure some will respond soon. Watch and wait or wait >>>> and see >>> >>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>> from most >>> >>>>doctors. The very best chance for correction and avoiding multiple spinal >>>>surgeries down the line is a properly applied series of casts done on the >>>>derotational, 3 dimensional table, as Chicago does. A regular Risser cast >>>> will >>>>not have the same chance at correction, that is likely the kind your >>>> current >>>>doctor referred to (?) >>>> >>>>The best time to begin tretment is under age 2 and under 50-60 degrees. >>>> Truly >>>>the sooner, the better, these casts correct along with your child's >>>> natural >>>>growth spurts, and you do not want to miss one, as that can allow the >>>> condition >>> >>>>to progress fast. Even weeks and certainly months can make a huge >>>> differerence >>>>in the length of treatment needed. The surgeries are not easy at all, are >>>> much >>>>more invasive, and can have many complications. >>>> >>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>non-surgical. At the least, it will postpone surgery for as long as >>>> possible, >>>>while bracing often does not even hold the curve in progressive cases. >>>> If you >>>>opt for bracing, the window of correction with proper casting can be >>>> lost, in >>>>some cases making surgery necessary very young, as young as 2 or 3, every >>>> 6 >>>>months or sooner. It has more than a 100 percent complication rate. >>>> >>>>Parents of children with low muscle tone will know more about that, but >>>> they are >>>> >>>>here for sure, you can also search for it in older posts on this group. >>>> Casting >>> >>>>is hard at first, but very do-able! >>>> >>>>Congratulations on adopting Kiya, you are in the right place to do the >>>> very best >>>> >>>>thing for your precious child! >>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>> Shriners, >>>>currently down from 62 degrees to 19.7 in cast) >>>> >>>> >>>> >>>> >>>> >>>>________________________________ >>>>From: cjustl <cjustl@...> >>>>infantile scoliosis treatment >>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>Subject: New here >>>> >>>> >>>>Hi! >>>> >>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 >>>> months >>>> >>>>old next week. She was diagnosed with moderate scoliosis in June of this >>>> year. >>>>She has had an MRI that came back normal (thank goodness). We are seeing >>>> a >>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>> months and >>> >>>>decide from there. He mentioned the Boston brace and possibly body >>>> casting but >>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>> >>>> >>>>After much research on my own, I read about Mehta casting. I don't even >>>> know if >>> >>>>my daughter would qualify for this type of cast. We are looking into >>>> applying at >>>> >>>>Shriner's hospital in Chicago. >>>> >>>>We adopted my daughter from Ethiopia last year. She came home at just >>>> under 6 >>>>months of age with very low muscle tone. She is yet to walk independently >>>> but is >>>> >>>>getting close. We have her in PT and are looking to qualify for Early >>>>intervention in our state. We worry about not doing anything and it >>>> getting a >>>>lot worse and we worry that casting will hold her back devleopment wise. >>>> So much >>>> >>>>to decide.... >>>> >>>>We are hoping to gain insight, info and support as we navigate this >>>> process for >>> >>>>our daughter. >>>> >>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's in >>>>Chicago? Advice as we start that process? >>>> >>>> >>>>mom, to Kiya, 20 months >>>> >>>> >>>> >>>> >>>> >>>> >>> >>> >>> >>> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 , When are y'all scheduled to go? Hope you can get in earlier. TashaMommy of 5 year old twin boys- and Fort Worth, Texas is treated at Texas ish Rite Hospital in Dallas, TexasSeries of 6 casts for 14 months followed by bracing since September 2007You can read 's story at.... http://www.infantilescoliosis.org/stories.html From: <missikay10@...>infantile scoliosis treatment Sent: Mon, July 26, 2010 6:39:49 PMSubject: Re: anesthesia Hi Jane,He's second that day an they will not allow any food/milk etc. After midnight but he can have clears in the morning. Trouble is he won't drink anything clear at all. Nothing. So he ends up so dehydrated. I'm going to beg they work him in first before the 4 hr surgery scheduled before him espically since those tend to run over which will push us back even further. Wish me luck!Jane Bigler <janemhar@...> wrote:>, can you call the day before and see what # he is? I know they'll let >Grace have clear fluids by mouth up to 2 hours prior to sedation. If you knew >he was going to be #4 and later in the day, they should be adjusting his input >restrictions accordingly. I know they sometimes don't tell you, but I ask now, >and will in the future because of our 17 hour day for Grace's 2nd cast >>>Honestly, I agree, it is a personal decision each parent has to make about the >iv before sedation. I personally couldn't do that to Grace. She does >wonderfully with everything just as they currently do it and I wouldn't want to >make it any rougher on her than I have to. Something additional to think about, >they may NOT do it before the procedure, unless he is already showing signs of >dehydration. But IDK, i'm sure every facility is different.> >Jane>>>>>________________________________>From: <missikay10@...>>infantile scoliosis treatment >Sent: Mon, July 26, 2010 3:56:50 PM>Subject: Re: anesthesia>> >,>You totally read my mind! I was thinking of asking them to try to start an iv >with him awake so he won't be so dehydrated since he won't take ANY clears at >all, not even a popsickle. ly, I'm a bit angry that they won't do a 45 >minute cast on a 2 yr old before a 4 hr spinal surgery but what do I know? >>>Thanks for the tip!>Xoxo,>>>heather@... wrote:>>>Any patient that must fast all night, then all day the next day prior to>>late afternoon anesthesia may benefit from IV for fluids prior to the>>procedure. It would help so much with anesthesia recovery....Although, I>>know its hard for little ones to be hooked up to IV.....Tough call...But,>>Ive seen this happen with my daughter multiple times. The more dehydrated>>she is prior to anesthesia, the more difficult her recovery....Food for>>thought. Every one is different I know, but thats what I have seen with>>my own child over the last decade.>>HRH>>>>> ,>>>>>> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One>>> pm is>>> around the same time we had for Bex last cast- one or 1:30...and he didn't>>> go>>> until 3:30! I asked and they said next time to call before coming that>>> morning>>> and ask if the OR is running on time. That's never happened to us before,>>> it was>>> an extreme circumstance with a complicated surgery that day...but still.>>> It is>>> not fun to see your kiddo hungry and not be able to give them milk! I say>>> demand>>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you>>> and I>>> am really dying to hear good news. Bex went up a half shoe size. Is Isaiah>>> growing taller in this one?>>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City>>> Shriners,>>> currently down from 62 degrees to 19.7 in cast)>>>>>>>>>>>>>>>>>> ________________________________>>> From: <missikay10@...>>>> infantile scoliosis treatment >>> Sent: Fri, July 23, 2010 5:45:50 PM>>> Subject: Re: New here>>>>>>  >>> Heidi,>>> Have I told you lately how great you are in responding and giving great>>> advice?>>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a>>> rough>>> day for sure. Just wanted to give you kuddos on your responses!>>>>>> Xoxo,>>> >>>>>> NIck Guthe <nickguthe@...> wrote:>>>>>>>Hi , welcome to CAST!>>>>>>>>36 degrees, is that in a lying down X-ray? Standing is more accurate,>>>> and will>>>>likely be higher. 36 is already pretty high. My advice is also not to>>>> wait to>>>>apply to Shriners. Chicago is a terrific center for this method, many>>>> families>>>>love it there! I am sure some will respond soon. Watch and wait or wait>>>> and see>>>>>>>is the wrong approach to take, unfortunately, and is the norm to hear>>>> from most>>>>>>>doctors. The very best chance for correction and avoiding multiple spinal>>>>surgeries down the line is a properly applied series of casts done on the>>>>derotational, 3 dimensional table, as Chicago does. A regular Risser cast>>>> will>>>>not have the same chance at correction, that is likely the kind your>>>> current>>>>doctor referred to (?)>>>>>>>>The best time to begin tretment is under age 2 and under 50-60 degrees.>>>> Truly>>>>the sooner, the better, these casts correct along with your child's>>>> natural>>>>growth spurts, and you do not want to miss one, as that can allow the>>>> condition>>>>>>>to progress fast. Even weeks and certainly months can make a huge>>>> differerence>>>>in the length of treatment needed. The surgeries are not easy at all, are>>>> much>>>>more invasive, and can have many complications.>>>>>>>>Mehta or EDF casting is the only potential cure, and it is gentle and>>>>non-surgical. At the least, it will postpone surgery for as long as>>>> possible,>>>>while bracing often does not even hold the curve in progressive cases.>>>> If you>>>>opt for bracing, the window of correction with proper casting can be>>>> lost, in>>>>some cases making surgery necessary very young, as young as 2 or 3, every>>>> 6>>>>months or sooner. It has more than a 100 percent complication rate.>>>>>>>>Parents of children with low muscle tone will know more about that, but>>>> they are>>>>>>>>here for sure, you can also search for it in older posts on this group.>>>> Casting>>>>>>>is hard at first, but very do-able!>>>>>>>>Congratulations on adopting Kiya, you are in the right place to do the>>>> very best>>>>>>>>thing for your precious child!>>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City>>>> Shriners,>>>>currently down from 62 degrees to 19.7 in cast)>>>>>>>>>>>>>>>>>>>>>>>>________________________________>>>>From: cjustl <cjustl@...>>>>>infantile scoliosis treatment >>>>Sent: Fri, July 23, 2010 12:15:28 PM>>>>Subject: New here>>>>>>>> >>>>Hi!>>>>>>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20>>>> months>>>>>>>>old next week. She was diagnosed with moderate scoliosis in June of this>>>> year.>>>>She has had an MRI that came back normal (thank goodness). We are seeing>>>> a>>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3>>>> months and>>>>>>>decide from there. He mentioned the Boston brace and possibly body>>>> casting but>>>>didn't give a lot of detail. My daughter's curve is currently at 36%.>>>>>>>>>>>>After much research on my own, I read about Mehta casting. I don't even>>>> know if>>>>>>>my daughter would qualify for this type of cast. We are looking into>>>> applying at>>>>>>>>Shriner's hospital in Chicago.>>>>>>>>We adopted my daughter from Ethiopia last year. She came home at just>>>> under 6>>>>months of age with very low muscle tone. She is yet to walk independently>>>> but is>>>>>>>>getting close. We have her in PT and are looking to qualify for Early>>>>intervention in our state. We worry about not doing anything and it>>>> getting a>>>>lot worse and we worry that casting will hold her back devleopment wise.>>>> So much>>>>>>>>to decide....>>>>>>>>We are hoping to gain insight, info and support as we navigate this>>>> process for>>>>>>>our daughter.>>>>>>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's in>>>>Chicago? Advice as we start that process?>>>>>>>>>>>>mom, to Kiya, 20 months>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Tasha, We are scheduled on fri july 30th. Say a prayer for me that they move our time up! Tasha Fontenot <ryanswalk@...> wrote: >, >When are y'all scheduled to go? Hope you can get in earlier. > Tasha >Mommy of 5 year old twin boys- and >Fort Worth, Texas > is treated at Texas ish Rite Hospital in Dallas, Texas >Series of 6 casts for 14 months followed by bracing since September 2007 >You can read 's story at.... http://www.infantilescoliosis.org/stories.html > > > > > > > > >________________________________ >From: <missikay10@...> >infantile scoliosis treatment >Sent: Mon, July 26, 2010 6:39:49 PM >Subject: Re: anesthesia > > >Hi Jane, >He's second that day an they will not allow any food/milk etc. After midnight >but he can have clears in the morning. Trouble is he won't drink anything clear >at all. Nothing. So he ends up so dehydrated. I'm going to beg they work him in >first before the 4 hr surgery scheduled before him espically since those tend to >run over which will push us back even further. Wish me luck! > > > >Jane Bigler <janemhar@...> wrote: > >>, can you call the day before and see what # he is? I know they'll let >>Grace have clear fluids by mouth up to 2 hours prior to sedation. If you knew >>he was going to be #4 and later in the day, they should be adjusting his input >>restrictions accordingly. I know they sometimes don't tell you, but I ask now, > >>and will in the future because of our 17 hour day for Grace's 2nd cast  >> >> >>Honestly, I agree, it is a personal decision each parent has to make about the >>iv before sedation. I personally couldn't do that to Grace. She does >>wonderfully with everything just as they currently do it and I wouldn't want to > >>make it any rougher on her than I have to.  Something additional to think about, >> >>they may NOT do it before the procedure, unless he is already showing signs of >>dehydration. But IDK, i'm sure every facility is different. >> >>Jane >> >> >> >> >>________________________________ >>From: <missikay10@...> >>infantile scoliosis treatment >>Sent: Mon, July 26, 2010 3:56:50 PM >>Subject: Re: anesthesia >> >> >>, >>You totally read my mind! I was thinking of asking them to try to start an iv >>with him awake so he won't be so dehydrated since he won't take ANY clears at >>all, not even a popsickle. ly, I'm a bit angry that they won't do a 45 >>minute cast on a 2 yr old before a 4 hr spinal surgery but what do I know? >> >> >>Thanks for the tip! >>Xoxo, >> >> >>heather@... wrote: >> >>>Any patient that must fast all night, then all day the next day prior to >>>late afternoon anesthesia may benefit from IV for fluids prior to the >>>procedure. It would help so much with anesthesia recovery....Although, I >>>know its hard for little ones to be hooked up to IV.....Tough call...But, >>>Ive seen this happen with my daughter multiple times. The more dehydrated >>>she is prior to anesthesia, the more difficult her recovery....Food for >>>thought. Every one is different I know, but thats what I have seen with >>>my own child over the last decade. >>>HRH >>> >>>> , >>>> >>>> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! One >>>> pm is >>>> around the same time we had for Bex last cast- one or 1:30...and he didn't >>>> go >>>> until 3:30! I asked and they said next time to call before coming that >>>> morning >>>> and ask if the OR is running on time. That's never happened to us before, >>>> it was >>>> an extreme circumstance with a complicated surgery that day...but still. >>>> It is >>>> not fun to see your kiddo hungry and not be able to give them milk! I say >>>> demand >>>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after you >>>> and I >>>> am really dying to hear good news. Bex went up a half shoe size. Is Isaiah >>>> growing taller in this one? >>>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>> Shriners, >>>> currently down from 62 degrees to 19.7 in cast) >>>> >>>> >>>> >>>> >>>> >>>> ________________________________ >>>> From: <missikay10@...> >>>> infantile scoliosis treatment >>>> Sent: Fri, July 23, 2010 5:45:50 PM >>>> Subject: Re: New here >>>> >>>>  >>>> Heidi, >>>> Have I told you lately how great you are in responding and giving great >>>> advice? >>>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be a >>>> rough >>>> day for sure. Just wanted to give you kuddos on your responses! >>>> >>>> Xoxo, >>>> >>>> >>>> NIck Guthe <nickguthe@...> wrote: >>>> >>>>>Hi , welcome to CAST! >>>>> >>>>>36 degrees, is that in a lying down X-ray? Standing is more accurate, >>>>> and will >>>>>likely be higher. 36 is already pretty high. My advice is also not to >>>>> wait to >>>>>apply to Shriners. Chicago is a terrific center for this method, many >>>>> families >>>>>love it there! I am sure some will respond soon. Watch and wait or wait >>>>> and see >>>> >>>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>>> from most >>>> >>>>>doctors. The very best chance for correction and avoiding multiple spinal >>>>>surgeries down the line is a properly applied series of casts done on the >>>>>derotational, 3 dimensional table, as Chicago does. A regular Risser cast >>>>> will >>>>>not have the same chance at correction, that is likely the kind your >>>>> current >>>>>doctor referred to (?) >>>>> >>>>>The best time to begin tretment is under age 2 and under 50-60 degrees. >>>>> Truly >>>>>the sooner, the better, these casts correct along with your child's >>>>> natural >>>>>growth spurts, and you do not want to miss one, as that can allow the >>>>> condition >>>> >>>>>to progress fast. Even weeks and certainly months can make a huge >>>>> differerence >>>>>in the length of treatment needed. The surgeries are not easy at all, are >>>>> much >>>>>more invasive, and can have many complications. >>>>> >>>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>>non-surgical. At the least, it will postpone surgery for as long as >>>>> possible, >>>>>while bracing often does not even hold the curve in progressive cases. >>>>> If you >>>>>opt for bracing, the window of correction with proper casting can be >>>>> lost, in >>>>>some cases making surgery necessary very young, as young as 2 or 3, every >>>>> 6 >>>>>months or sooner. It has more than a 100 percent complication rate. >>>>> >>>>>Parents of children with low muscle tone will know more about that, but >>>>> they are >>>>> >>>>>here for sure, you can also search for it in older posts on this group. >>>>> Casting >>>> >>>>>is hard at first, but very do-able! >>>>> >>>>>Congratulations on adopting Kiya, you are in the right place to do the >>>>> very best >>>>> >>>>>thing for your precious child! >>>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>>> Shriners, >>>>>currently down from 62 degrees to 19.7 in cast) >>>>> >>>>> >>>>> >>>>> >>>>> >>>>>________________________________ >>>>>From: cjustl <cjustl@...> >>>>>infantile scoliosis treatment >>>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>>Subject: New here >>>>> >>>>> >>>>>Hi! >>>>> >>>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be 20 >>>>> months >>>>> >>>>>old next week. She was diagnosed with moderate scoliosis in June of this >>>>> year. >>>>>She has had an MRI that came back normal (thank goodness). We are seeing >>>>> a >>>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>>> months and >>>> >>>>>decide from there. He mentioned the Boston brace and possibly body >>>>> casting but >>>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>>> >>>>> >>>>>After much research on my own, I read about Mehta casting. I don't even >>>>> know if >>>> >>>>>my daughter would qualify for this type of cast. We are looking into >>>>> applying at >>>>> >>>>>Shriner's hospital in Chicago. >>>>> >>>>>We adopted my daughter from Ethiopia last year. She came home at just >>>>> under 6 >>>>>months of age with very low muscle tone. She is yet to walk independently >>>>> but is >>>>> >>>>>getting close. We have her in PT and are looking to qualify for Early >>>>>intervention in our state. We worry about not doing anything and it >>>>> getting a >>>>>lot worse and we worry that casting will hold her back devleopment wise. >>>>> So much >>>>> >>>>>to decide.... >>>>> >>>>>We are hoping to gain insight, info and support as we navigate this >>>>> process for >>>> >>>>>our daughter. >>>>> >>>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's in >>>>>Chicago? Advice as we start that process? >>>>> >>>>> >>>>>mom, to Kiya, 20 months >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>>> >>>> >>> >>> >> >> >> >> >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 Hey Mel, Whats the rule at TSRH? Youngest 1st? > , > You totally read my mind! I was thinking of asking them to try to start > an iv with him awake so he won't be so dehydrated since he won't take ANY > clears at all, not even a popsickle. ly, I'm a bit angry that they > won't do a 45 minute cast on a 2 yr old before a 4 hr spinal surgery but > what do I know? > > Thanks for the tip! > Xoxo, > > > heather@... wrote: > >>Any patient that must fast all night, then all day the next day prior to >>late afternoon anesthesia may benefit from IV for fluids prior to the >>procedure. It would help so much with anesthesia recovery....Although, I >>know its hard for little ones to be hooked up to IV.....Tough call...But, >>Ive seen this happen with my daughter multiple times. The more >> dehydrated >>she is prior to anesthesia, the more difficult her recovery....Food for >>thought. Every one is different I know, but thats what I have seen with >>my own child over the last decade. >>HRH >> >>> , >>> >>> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! >>> One >>> pm is >>> around the same time we had for Bex last cast- one or 1:30...and he >>> didn't >>> go >>> until 3:30! I asked and they said next time to call before coming that >>> morning >>> and ask if the OR is running on time. That's never happened to us >>> before, >>> it was >>> an extreme circumstance with a complicated surgery that day...but >>> still. >>> It is >>> not fun to see your kiddo hungry and not be able to give them milk! I >>> say >>> demand >>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after >>> you >>> and I >>> am really dying to hear good news. Bex went up a half shoe size. Is >>> Isaiah >>> growing taller in this one? >>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>> Shriners, >>> currently down from 62 degrees to 19.7 in cast) >>> >>> >>> >>> >>> >>> ________________________________ >>> From: <missikay10@...> >>> infantile scoliosis treatment >>> Sent: Fri, July 23, 2010 5:45:50 PM >>> Subject: Re: New here >>> >>>  >>> Heidi, >>> Have I told you lately how great you are in responding and giving great >>> advice? >>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be >>> a >>> rough >>> day for sure. Just wanted to give you kuddos on your responses! >>> >>> Xoxo, >>> >>> >>> NIck Guthe <nickguthe@...> wrote: >>> >>>>Hi , welcome to CAST! >>>> >>>>36 degrees, is that in a lying down X-ray? Standing is more >>>> accurate, >>>> and will >>>>likely be higher. 36 is already pretty high. My advice is also not to >>>> wait to >>>>apply to Shriners. Chicago is a terrific center for this method, many >>>> families >>>>love it there! I am sure some will respond soon. Watch and wait or >>>> wait >>>> and see >>> >>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>> from most >>> >>>>doctors. The very best chance for correction and avoiding multiple >>>> spinal >>>>surgeries down the line is a properly applied series of casts done on >>>> the >>>>derotational, 3 dimensional table, as Chicago does. A regular Risser >>>> cast >>>> will >>>>not have the same chance at correction, that is likely the kind your >>>> current >>>>doctor referred to (?) >>>> >>>>The best time to begin tretment is under age 2 and under 50-60 degrees. >>>> Truly >>>>the sooner, the better, these casts correct along with your child's >>>> natural >>>>growth spurts, and you do not want to miss one, as that can allow the >>>> condition >>> >>>>to progress fast. Even weeks and certainly months can make a huge >>>> differerence >>>>in the length of treatment needed. The surgeries are not easy at all, >>>> are >>>> much >>>>more invasive, and can have many complications. >>>> >>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>non-surgical. At the least, it will postpone surgery for as long as >>>> possible, >>>>while bracing often does not even hold the curve in progressive >>>> cases. >>>> If you >>>>opt for bracing, the window of correction with proper casting can be >>>> lost, in >>>>some cases making surgery necessary very young, as young as 2 or 3, >>>> every >>>> 6 >>>>months or sooner. It has more than a 100 percent complication rate. >>>> >>>>Parents of children with low muscle tone will know more about that, but >>>> they are >>>> >>>>here for sure, you can also search for it in older posts on this group. >>>> Casting >>> >>>>is hard at first, but very do-able! >>>> >>>>Congratulations on adopting Kiya, you are in the right place to do the >>>> very best >>>> >>>>thing for your precious child! >>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>> Shriners, >>>>currently down from 62 degrees to 19.7 in cast) >>>> >>>> >>>> >>>> >>>> >>>>________________________________ >>>>From: cjustl <cjustl@...> >>>>infantile scoliosis treatment >>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>Subject: New here >>>> >>>> >>>>Hi! >>>> >>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be >>>> 20 >>>> months >>>> >>>>old next week. She was diagnosed with moderate scoliosis in June of >>>> this >>>> year. >>>>She has had an MRI that came back normal (thank goodness). We are >>>> seeing >>>> a >>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>> months and >>> >>>>decide from there. He mentioned the Boston brace and possibly body >>>> casting but >>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>> >>>> >>>>After much research on my own, I read about Mehta casting. I don't even >>>> know if >>> >>>>my daughter would qualify for this type of cast. We are looking into >>>> applying at >>>> >>>>Shriner's hospital in Chicago. >>>> >>>>We adopted my daughter from Ethiopia last year. She came home at just >>>> under 6 >>>>months of age with very low muscle tone. She is yet to walk >>>> independently >>>> but is >>>> >>>>getting close. We have her in PT and are looking to qualify for Early >>>>intervention in our state. We worry about not doing anything and it >>>> getting a >>>>lot worse and we worry that casting will hold her back devleopment >>>> wise. >>>> So much >>>> >>>>to decide.... >>>> >>>>We are hoping to gain insight, info and support as we navigate this >>>> process for >>> >>>>our daughter. >>>> >>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's >>>> in >>>>Chicago? Advice as we start that process? >>>> >>>> >>>>mom, to Kiya, 20 months >>>> >>>> >>>> >>>> >>>> >>>> >>> >>> >>> >>> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2010 Report Share Posted July 27, 2010 , At one time they told me it was but the child before us is older. I was told the anesthesiologists want to get the big surgery out of the way first. I'm going to talk to the surgery scheduler the day before and see if she can do anything but I doubt it. heather@... wrote: >Hey Mel, >Whats the rule at TSRH? Youngest 1st? > > >> , >> You totally read my mind! I was thinking of asking them to try to start >> an iv with him awake so he won't be so dehydrated since he won't take ANY >> clears at all, not even a popsickle. ly, I'm a bit angry that they >> won't do a 45 minute cast on a 2 yr old before a 4 hr spinal surgery but >> what do I know? >> >> Thanks for the tip! >> Xoxo, >> >> >> heather@... wrote: >> >>>Any patient that must fast all night, then all day the next day prior to >>>late afternoon anesthesia may benefit from IV for fluids prior to the >>>procedure. It would help so much with anesthesia recovery....Although, I >>>know its hard for little ones to be hooked up to IV.....Tough call...But, >>>Ive seen this happen with my daughter multiple times. The more >>> dehydrated >>>she is prior to anesthesia, the more difficult her recovery....Food for >>>thought. Every one is different I know, but thats what I have seen with >>>my own child over the last decade. >>>HRH >>> >>>> , >>>> >>>> Awww...you are so sweet. Can you believe it's number 6 already? Crazy! >>>> One >>>> pm is >>>> around the same time we had for Bex last cast- one or 1:30...and he >>>> didn't >>>> go >>>> until 3:30! I asked and they said next time to call before coming that >>>> morning >>>> and ask if the OR is running on time. That's never happened to us >>>> before, >>>> it was >>>> an extreme circumstance with a complicated surgery that day...but >>>> still. >>>> It is >>>> not fun to see your kiddo hungry and not be able to give them milk! I >>>> say >>>> demand >>>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after >>>> you >>>> and I >>>> am really dying to hear good news. Bex went up a half shoe size. Is >>>> Isaiah >>>> growing taller in this one? >>>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>> Shriners, >>>> currently down from 62 degrees to 19.7 in cast) >>>> >>>> >>>> >>>> >>>> >>>> ________________________________ >>>> From: <missikay10@...> >>>> infantile scoliosis treatment >>>> Sent: Fri, July 23, 2010 5:45:50 PM >>>> Subject: Re: New here >>>> >>>>  >>>> Heidi, >>>> Have I told you lately how great you are in responding and giving great >>>> advice? >>>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will be >>>> a >>>> rough >>>> day for sure. Just wanted to give you kuddos on your responses! >>>> >>>> Xoxo, >>>> >>>> >>>> NIck Guthe <nickguthe@...> wrote: >>>> >>>>>Hi , welcome to CAST! >>>>> >>>>>36 degrees, is that in a lying down X-ray? Standing is more >>>>> accurate, >>>>> and will >>>>>likely be higher. 36 is already pretty high. My advice is also not to >>>>> wait to >>>>>apply to Shriners. Chicago is a terrific center for this method, many >>>>> families >>>>>love it there! I am sure some will respond soon. Watch and wait or >>>>> wait >>>>> and see >>>> >>>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>>> from most >>>> >>>>>doctors. The very best chance for correction and avoiding multiple >>>>> spinal >>>>>surgeries down the line is a properly applied series of casts done on >>>>> the >>>>>derotational, 3 dimensional table, as Chicago does. A regular Risser >>>>> cast >>>>> will >>>>>not have the same chance at correction, that is likely the kind your >>>>> current >>>>>doctor referred to (?) >>>>> >>>>>The best time to begin tretment is under age 2 and under 50-60 degrees. >>>>> Truly >>>>>the sooner, the better, these casts correct along with your child's >>>>> natural >>>>>growth spurts, and you do not want to miss one, as that can allow the >>>>> condition >>>> >>>>>to progress fast. Even weeks and certainly months can make a huge >>>>> differerence >>>>>in the length of treatment needed. The surgeries are not easy at all, >>>>> are >>>>> much >>>>>more invasive, and can have many complications. >>>>> >>>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>>non-surgical. At the least, it will postpone surgery for as long as >>>>> possible, >>>>>while bracing often does not even hold the curve in progressive >>>>> cases. >>>>> If you >>>>>opt for bracing, the window of correction with proper casting can be >>>>> lost, in >>>>>some cases making surgery necessary very young, as young as 2 or 3, >>>>> every >>>>> 6 >>>>>months or sooner. It has more than a 100 percent complication rate. >>>>> >>>>>Parents of children with low muscle tone will know more about that, but >>>>> they are >>>>> >>>>>here for sure, you can also search for it in older posts on this group. >>>>> Casting >>>> >>>>>is hard at first, but very do-able! >>>>> >>>>>Congratulations on adopting Kiya, you are in the right place to do the >>>>> very best >>>>> >>>>>thing for your precious child! >>>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt Lake City >>>>> Shriners, >>>>>currently down from 62 degrees to 19.7 in cast) >>>>> >>>>> >>>>> >>>>> >>>>> >>>>>________________________________ >>>>>From: cjustl <cjustl@...> >>>>>infantile scoliosis treatment >>>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>>Subject: New here >>>>> >>>>> >>>>>Hi! >>>>> >>>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will be >>>>> 20 >>>>> months >>>>> >>>>>old next week. She was diagnosed with moderate scoliosis in June of >>>>> this >>>>> year. >>>>>She has had an MRI that came back normal (thank goodness). We are >>>>> seeing >>>>> a >>>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>>> months and >>>> >>>>>decide from there. He mentioned the Boston brace and possibly body >>>>> casting but >>>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>>> >>>>> >>>>>After much research on my own, I read about Mehta casting. I don't even >>>>> know if >>>> >>>>>my daughter would qualify for this type of cast. We are looking into >>>>> applying at >>>>> >>>>>Shriner's hospital in Chicago. >>>>> >>>>>We adopted my daughter from Ethiopia last year. She came home at just >>>>> under 6 >>>>>months of age with very low muscle tone. She is yet to walk >>>>> independently >>>>> but is >>>>> >>>>>getting close. We have her in PT and are looking to qualify for Early >>>>>intervention in our state. We worry about not doing anything and it >>>>> getting a >>>>>lot worse and we worry that casting will hold her back devleopment >>>>> wise. >>>>> So much >>>>> >>>>>to decide.... >>>>> >>>>>We are hoping to gain insight, info and support as we navigate this >>>>> process for >>>> >>>>>our daughter. >>>>> >>>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's >>>>> in >>>>>Chicago? Advice as we start that process? >>>>> >>>>> >>>>>mom, to Kiya, 20 months >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>>> >>>> >>> >>> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 You never know! I hope this can be accomplished for lil Isaiah since applying the cast is such a quick procedure but understand the reasoning of the anesthesiologist. Spine cases are brutal on all involved. Let us know hon. HRH > , > At one time they told me it was but the child before us is older. I was > told the anesthesiologists want to get the big surgery out of the way > first. I'm going to talk to the surgery scheduler the day before and see > if she can do anything but I doubt it. > > > > heather@... wrote: > >>Hey Mel, >>Whats the rule at TSRH? Youngest 1st? >> >> >>> , >>> You totally read my mind! I was thinking of asking them to try to >>> start >>> an iv with him awake so he won't be so dehydrated since he won't take >>> ANY >>> clears at all, not even a popsickle. ly, I'm a bit angry that >>> they >>> won't do a 45 minute cast on a 2 yr old before a 4 hr spinal surgery >>> but >>> what do I know? >>> >>> Thanks for the tip! >>> Xoxo, >>> >>> >>> heather@... wrote: >>> >>>>Any patient that must fast all night, then all day the next day prior >>>> to >>>>late afternoon anesthesia may benefit from IV for fluids prior to the >>>>procedure. It would help so much with anesthesia recovery....Although, >>>> I >>>>know its hard for little ones to be hooked up to IV.....Tough >>>> call...But, >>>>Ive seen this happen with my daughter multiple times. The more >>>> dehydrated >>>>she is prior to anesthesia, the more difficult her recovery....Food for >>>>thought. Every one is different I know, but thats what I have seen >>>> with >>>>my own child over the last decade. >>>>HRH >>>> >>>>> , >>>>> >>>>> Awww...you are so sweet. Can you believe it's number 6 already? >>>>> Crazy! >>>>> One >>>>> pm is >>>>> around the same time we had for Bex last cast- one or 1:30...and he >>>>> didn't >>>>> go >>>>> until 3:30! I asked and they said next time to call before coming >>>>> that >>>>> morning >>>>> and ask if the OR is running on time. That's never happened to >>>>> us >>>>> before, >>>>> it was >>>>> an extreme circumstance with a complicated surgery that >>>>> day...but >>>>> still. >>>>> It is >>>>> not fun to see your kiddo hungry and not be able to give them milk! I >>>>> say >>>>> demand >>>>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after >>>>> you >>>>> and I >>>>> am really dying to hear good news. Bex went up a half shoe size. Is >>>>> Isaiah >>>>> growing taller in this one? >>>>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt >>>>> Lake City >>>>> Shriners, >>>>> currently down from 62 degrees to 19.7 in cast) >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> ________________________________ >>>>> From: <missikay10@...> >>>>> infantile scoliosis treatment >>>>> Sent: Fri, July 23, 2010 5:45:50 PM >>>>> Subject: Re: New here >>>>> >>>>>  >>>>> Heidi, >>>>> Have I told you lately how great you are in responding and giving >>>>> great >>>>> advice? >>>>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will >>>>> be >>>>> a >>>>> rough >>>>> day for sure. Just wanted to give you kuddos on your responses! >>>>> >>>>> Xoxo, >>>>> >>>>> >>>>> NIck Guthe <nickguthe@...> wrote: >>>>> >>>>>>Hi , welcome to CAST! >>>>>> >>>>>>36 degrees, is that in a lying down X-ray? Standing is more >>>>>> accurate, >>>>>> and will >>>>>>likely be higher. 36 is already pretty high. My advice is also not to >>>>>> wait to >>>>>>apply to Shriners. Chicago is a terrific center for this method, many >>>>>> families >>>>>>love it there! I am sure some will respond soon. Watch >>>>>> and wait or >>>>>> wait >>>>>> and see >>>>> >>>>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>>>> from most >>>>> >>>>>>doctors. The very best chance for correction and avoiding multiple >>>>>> spinal >>>>>>surgeries down the line is a properly applied series of casts done on >>>>>> the >>>>>>derotational, 3 dimensional table, as Chicago does. A regular Risser >>>>>> cast >>>>>> will >>>>>>not have the same chance at correction, that is likely the >>>>>> kind your >>>>>> current >>>>>>doctor referred to (?) >>>>>> >>>>>>The best time to begin tretment is under age 2 and under 50-60 >>>>>> degrees. >>>>>> Truly >>>>>>the sooner, the better, these casts correct along with your child's >>>>>> natural >>>>>>growth spurts, and you do not want to miss one, as that can allow the >>>>>> condition >>>>> >>>>>>to progress fast. Even weeks and certainly months can make a huge >>>>>> differerence >>>>>>in the length of treatment needed. The surgeries are not easy at all, >>>>>> are >>>>>> much >>>>>>more invasive, and can have many complications. >>>>>> >>>>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>>>non-surgical. At the least, it will postpone surgery for as long as >>>>>> possible, >>>>>>while bracing often does not even hold the curve in >>>>>> progressive >>>>>> cases. >>>>>> If you >>>>>>opt for bracing, the window of correction with proper casting >>>>>> can be >>>>>> lost, in >>>>>>some cases making surgery necessary very young, as young as 2 or 3, >>>>>> every >>>>>> 6 >>>>>>months or sooner. It has more than a 100 percent complication rate. >>>>>> >>>>>>Parents of children with low muscle tone will know more about that, >>>>>> but >>>>>> they are >>>>>> >>>>>>here for sure, you can also search for it in older posts on this >>>>>> group. >>>>>> Casting >>>>> >>>>>>is hard at first, but very do-able! >>>>>> >>>>>>Congratulations on adopting Kiya, you are in the right place to do >>>>>> the >>>>>> very best >>>>>> >>>>>>thing for your precious child! >>>>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt >>>>>> Lake City >>>>>> Shriners, >>>>>>currently down from 62 degrees to 19.7 in cast) >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>>________________________________ >>>>>>From: cjustl <cjustl@...> >>>>>>infantile scoliosis treatment >>>>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>>>Subject: New here >>>>>> >>>>>> >>>>>>Hi! >>>>>> >>>>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will >>>>>> be >>>>>> 20 >>>>>> months >>>>>> >>>>>>old next week. She was diagnosed with moderate scoliosis in June of >>>>>> this >>>>>> year. >>>>>>She has had an MRI that came back normal (thank goodness). We are >>>>>> seeing >>>>>> a >>>>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>>>> months and >>>>> >>>>>>decide from there. He mentioned the Boston brace and possibly body >>>>>> casting but >>>>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>>>> >>>>>> >>>>>>After much research on my own, I read about Mehta casting. I don't >>>>>> even >>>>>> know if >>>>> >>>>>>my daughter would qualify for this type of cast. We are looking into >>>>>> applying at >>>>>> >>>>>>Shriner's hospital in Chicago. >>>>>> >>>>>>We adopted my daughter from Ethiopia last year. She came home at just >>>>>> under 6 >>>>>>months of age with very low muscle tone. She is yet to walk >>>>>> independently >>>>>> but is >>>>>> >>>>>>getting close. We have her in PT and are looking to qualify for Early >>>>>>intervention in our state. We worry about not doing anything and it >>>>>> getting a >>>>>>lot worse and we worry that casting will hold her back devleopment >>>>>> wise. >>>>>> So much >>>>>> >>>>>>to decide.... >>>>>> >>>>>>We are hoping to gain insight, info and support as we navigate this >>>>>> process for >>>>> >>>>>>our daughter. >>>>>> >>>>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's >>>>>> in >>>>>>Chicago? Advice as we start that process? >>>>>> >>>>>> >>>>>>mom, to Kiya, 20 months >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>>> >>> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2010 Report Share Posted July 29, 2010 Thanks , We can't move him up earlier and the previous surgery will likely run over the nurse said. So were stuck. He can eat up to 5am so we are going to wake him at 4:30am and feed him. Guess that's the best we can do. Ill post how it goes! mom to isaiah heather@... wrote: >You never know! I hope this can be accomplished for lil Isaiah since >applying the cast is such a quick procedure but understand the reasoning >of the anesthesiologist. Spine cases are brutal on all involved. Let us >know hon. >HRH > >> , >> At one time they told me it was but the child before us is older. I was >> told the anesthesiologists want to get the big surgery out of the way >> first. I'm going to talk to the surgery scheduler the day before and see >> if she can do anything but I doubt it. >> >> >> >> heather@... wrote: >> >>>Hey Mel, >>>Whats the rule at TSRH? Youngest 1st? >>> >>> >>>> , >>>> You totally read my mind! I was thinking of asking them to try to >>>> start >>>> an iv with him awake so he won't be so dehydrated since he won't take >>>> ANY >>>> clears at all, not even a popsickle. ly, I'm a bit angry that >>>> they >>>> won't do a 45 minute cast on a 2 yr old before a 4 hr spinal surgery >>>> but >>>> what do I know? >>>> >>>> Thanks for the tip! >>>> Xoxo, >>>> >>>> >>>> heather@... wrote: >>>> >>>>>Any patient that must fast all night, then all day the next day prior >>>>> to >>>>>late afternoon anesthesia may benefit from IV for fluids prior to the >>>>>procedure. It would help so much with anesthesia recovery....Although, >>>>> I >>>>>know its hard for little ones to be hooked up to IV.....Tough >>>>> call...But, >>>>>Ive seen this happen with my daughter multiple times. The more >>>>> dehydrated >>>>>she is prior to anesthesia, the more difficult her recovery....Food for >>>>>thought. Every one is different I know, but thats what I have seen >>>>> with >>>>>my own child over the last decade. >>>>>HRH >>>>> >>>>>> , >>>>>> >>>>>> Awww...you are so sweet. Can you believe it's number 6 already? >>>>>> Crazy! >>>>>> One >>>>>> pm is >>>>>> around the same time we had for Bex last cast- one or 1:30...and he >>>>>> didn't >>>>>> go >>>>>> until 3:30! I asked and they said next time to call before coming >>>>>> that >>>>>> morning >>>>>> and ask if the OR is running on time. That's never happened to >>>>>> us >>>>>> before, >>>>>> it was >>>>>> an extreme circumstance with a complicated surgery that >>>>>> day...but >>>>>> still. >>>>>> It is >>>>>> not fun to see your kiddo hungry and not be able to give them milk! I >>>>>> say >>>>>> demand >>>>>> popcicles at least. I hope Isaiah gets moved up. We go 2 weeks after >>>>>> you >>>>>> and I >>>>>> am really dying to hear good news. Bex went up a half shoe size. Is >>>>>> Isaiah >>>>>> growing taller in this one? >>>>>>  Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt >>>>>> Lake City >>>>>> Shriners, >>>>>> currently down from 62 degrees to 19.7 in cast) >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> ________________________________ >>>>>> From: <missikay10@...> >>>>>> infantile scoliosis treatment >>>>>> Sent: Fri, July 23, 2010 5:45:50 PM >>>>>> Subject: Re: New here >>>>>> >>>>>>  >>>>>> Heidi, >>>>>> Have I told you lately how great you are in responding and giving >>>>>> great >>>>>> advice? >>>>>> BTW Isaiah gets cast #6 on fri july 30th...and not til 1pm! It will >>>>>> be >>>>>> a >>>>>> rough >>>>>> day for sure. Just wanted to give you kuddos on your responses! >>>>>> >>>>>> Xoxo, >>>>>> >>>>>> >>>>>> NIck Guthe <nickguthe@...> wrote: >>>>>> >>>>>>>Hi , welcome to CAST! >>>>>>> >>>>>>>36 degrees, is that in a lying down X-ray? Standing is more >>>>>>> accurate, >>>>>>> and will >>>>>>>likely be higher. 36 is already pretty high. My advice is also not to >>>>>>> wait to >>>>>>>apply to Shriners. Chicago is a terrific center for this method, many >>>>>>> families >>>>>>>love it there! I am sure some will respond soon. Watch >>>>>>> and wait or >>>>>>> wait >>>>>>> and see >>>>>> >>>>>>>is the wrong approach to take, unfortunately, and is the norm to hear >>>>>>> from most >>>>>> >>>>>>>doctors. The very best chance for correction and avoiding multiple >>>>>>> spinal >>>>>>>surgeries down the line is a properly applied series of casts done on >>>>>>> the >>>>>>>derotational, 3 dimensional table, as Chicago does. A regular Risser >>>>>>> cast >>>>>>> will >>>>>>>not have the same chance at correction, that is likely the >>>>>>> kind your >>>>>>> current >>>>>>>doctor referred to (?) >>>>>>> >>>>>>>The best time to begin tretment is under age 2 and under 50-60 >>>>>>> degrees. >>>>>>> Truly >>>>>>>the sooner, the better, these casts correct along with your child's >>>>>>> natural >>>>>>>growth spurts, and you do not want to miss one, as that can allow the >>>>>>> condition >>>>>> >>>>>>>to progress fast. Even weeks and certainly months can make a huge >>>>>>> differerence >>>>>>>in the length of treatment needed. The surgeries are not easy at all, >>>>>>> are >>>>>>> much >>>>>>>more invasive, and can have many complications. >>>>>>> >>>>>>>Mehta or EDF casting is the only potential cure, and it is gentle and >>>>>>>non-surgical. At the least, it will postpone surgery for as long as >>>>>>> possible, >>>>>>>while bracing often does not even hold the curve in >>>>>>> progressive >>>>>>> cases. >>>>>>> If you >>>>>>>opt for bracing, the window of correction with proper casting >>>>>>> can be >>>>>>> lost, in >>>>>>>some cases making surgery necessary very young, as young as 2 or 3, >>>>>>> every >>>>>>> 6 >>>>>>>months or sooner. It has more than a 100 percent complication rate. >>>>>>> >>>>>>>Parents of children with low muscle tone will know more about that, >>>>>>> but >>>>>>> they are >>>>>>> >>>>>>>here for sure, you can also search for it in older posts on this >>>>>>> group. >>>>>>> Casting >>>>>> >>>>>>>is hard at first, but very do-able! >>>>>>> >>>>>>>Congratulations on adopting Kiya, you are in the right place to do >>>>>>> the >>>>>>> very best >>>>>>> >>>>>>>thing for your precious child! >>>>>>> Heidi, Bexon's Mommy, (3 years old, in 7th cast from Salt >>>>>>> Lake City >>>>>>> Shriners, >>>>>>>currently down from 62 degrees to 19.7 in cast) >>>>>>> >>>>>>> >>>>>>> >>>>>>> >>>>>>> >>>>>>>________________________________ >>>>>>>From: cjustl <cjustl@...> >>>>>>>infantile scoliosis treatment >>>>>>>Sent: Fri, July 23, 2010 12:15:28 PM >>>>>>>Subject: New here >>>>>>> >>>>>>> >>>>>>>Hi! >>>>>>> >>>>>>>We are VERY new to this world of scoliosis. My daughter, Kiya, will >>>>>>> be >>>>>>> 20 >>>>>>> months >>>>>>> >>>>>>>old next week. She was diagnosed with moderate scoliosis in June of >>>>>>> this >>>>>>> year. >>>>>>>She has had an MRI that came back normal (thank goodness). We are >>>>>>> seeing >>>>>>> a >>>>>>>doctor here in Madison, WI and he is telling us to repeat xrays in 3 >>>>>>> months and >>>>>> >>>>>>>decide from there. He mentioned the Boston brace and possibly body >>>>>>> casting but >>>>>>>didn't give a lot of detail. My daughter's curve is currently at 36%. >>>>>>> >>>>>>> >>>>>>>After much research on my own, I read about Mehta casting. I don't >>>>>>> even >>>>>>> know if >>>>>> >>>>>>>my daughter would qualify for this type of cast. We are looking into >>>>>>> applying at >>>>>>> >>>>>>>Shriner's hospital in Chicago. >>>>>>> >>>>>>>We adopted my daughter from Ethiopia last year. She came home at just >>>>>>> under 6 >>>>>>>months of age with very low muscle tone. She is yet to walk >>>>>>> independently >>>>>>> but is >>>>>>> >>>>>>>getting close. We have her in PT and are looking to qualify for Early >>>>>>>intervention in our state. We worry about not doing anything and it >>>>>>> getting a >>>>>>>lot worse and we worry that casting will hold her back devleopment >>>>>>> wise. >>>>>>> So much >>>>>>> >>>>>>>to decide.... >>>>>>> >>>>>>>We are hoping to gain insight, info and support as we navigate this >>>>>>> process for >>>>>> >>>>>>>our daughter. >>>>>>> >>>>>>>Thanks in advance for any advice, info, etc. Anyone been to Shriner's >>>>>>> in >>>>>>>Chicago? Advice as we start that process? >>>>>>> >>>>>>> >>>>>>>mom, to Kiya, 20 months >>>>>>> >>>>>>> >>>>>>> >>>>>>> >>>>>>> >>>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>> >>>>> >>>> >>> >>> >> > > Quote Link to comment Share on other sites More sharing options...
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