Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Hi , My son, , has congenital scoliosis in addition to his RSS. He was diagnosed at about 18 months, and underwent a spinal fusion last January at age 4. He had over a 60 degree curve in his spine and they fused T11, T12, and L1. Our goal in fusing was not so much to correct the curve, but to prevent the areas above it and below from curving. So far, we're doing OK, but it's only been 18 months since the fusion. is not on growth hormone, but is pretty close to being ready for it. I'm trying to hold off on GH as long as possible because noone can give me any clear answers as to what it will do to his spine. I'm REAL concerned that it will make his torso area grow at a rapid rate, which will mean he'll need another spinal fusion sooner than later. has had 9 surgeries and many other tests, etc., and I'll tell ya, the spinal fusion was the worst thing we've ever lived through. I DO NOT want to go thru another one of those any time soon, so honestly I don't know if we'll do GH or not. After the spinal fusion, he spent 2 weeks in the hospital, 4 months in a full body cast, then 1 year in a brace. It was not fun at all. If you'd like any more info regarding his scoli or surgery, etc., please feel free to email me privately. I have not found many RSS kids with the scoli has, so I'm always happy to find someone else in my shoes. Cheryl Mom to , , and - all 5-1/2 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 hi cherryl i seen where micheal had a fussion was it anterior posterior? katie is 5 1\2 anda ta bout a 35 degree curve which is where she will be fussed at due to itbeing low lumbar spine. hears as well is conginital due to fussed vertebre at L1-2 and L2-3 plus L3 and 4 are hemi vertebr which is causing her left side to grow faster reulting in the curve. what was the reson for the full body cast was it due to the location? i am just curious since katie could have one at any tie providing she desideds to grow again. she hasnt gained hieght in almost 14mo. joanna katelynn vaters and rss austin vaters > Hi , > > My son, , has congenital scoliosis in addition to his RSS. > He was diagnosed at about 18 months, and underwent a spinal fusion > last January at age 4. He had over a 60 degree curve in his spine > and they fused T11, T12, and L1. Our goal in fusing was not so much > to correct the curve, but to prevent the areas above it and below > from curving. So far, we're doing OK, but it's only been 18 months > since the fusion. is not on growth hormone, but is pretty > close to being ready for it. I'm trying to hold off on GH as long > as possible because noone can give me any clear answers as to what > it will do to his spine. I'm REAL concerned that it will make his > torso area grow at a rapid rate, which will mean he'll need another > spinal fusion sooner than later. has had 9 surgeries and > many other tests, etc., and I'll tell ya, the spinal fusion was the > worst thing we've ever lived through. I DO NOT want to go thru > another one of those any time soon, so honestly I don't know if > we'll do GH or not. After the spinal fusion, he spent 2 weeks in > the hospital, 4 months in a full body cast, then 1 year in a brace. > It was not fun at all. > > If you'd like any more info regarding his scoli or surgery, etc., > please feel free to email me privately. I have not found many RSS > kids with the scoli has, so I'm always happy to find someone > else in my shoes. > > Cheryl > Mom to , , and - all 5-1/2 years old Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 hi my daughter has conginital scoliosis but i do know alittle about idiopathic scoliosis which is most likeally what your son has since they cant find and cause for it. i do know it is most common in teens or it can be caused by weak trunk muscles as well. when they grow it progresses but htey cant explian why some do and some stay stable. i do know that growth homrmones cna agrovate pre exsisting curves which is partially why katie has not started yet. joanna katelynn 5 1\2 vaters RSS austin vaters Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 if u are concerned about scoliosis some of th ethings to look for are lopsided shoulder blades,uneven hips,popping ribs,and uneven niples. sometimes if the curve is bad enough around 20 degrees u can see the curve by having him bend over and touch his toes if it is night in a straight line there probally is a crve. a x ray will show any curves that might be present plus nad boney abnorality as well that might be cuasing it. if he has any vertebre abnoralities u mighta sk for aspinal mri tomake shure ther are no spinal defects that are hidden. other whise a reg x ray will be sufficiant. joanna > > > Hi , > > > > > > My son, , has congenital scoliosis in addition to his RSS. > > > He was diagnosed at about 18 months, and underwent a spinal fusion > > > last January at age 4. He had over a 60 degree curve in his spine > > > and they fused T11, T12, and L1. Our goal in fusing was not so > > much > > > to correct the curve, but to prevent the areas above it and below > > > from curving. So far, we're doing OK, but it's only been 18 months > > > since the fusion. is not on growth hormone, but is pretty > > > close to being ready for it. I'm trying to hold off on GH as long > > > as possible because noone can give me any clear answers as to what > > > it will do to his spine. I'm REAL concerned that it will make his > > > torso area grow at a rapid rate, which will mean he'll need another > > > spinal fusion sooner than later. has had 9 surgeries and > > > many other tests, etc., and I'll tell ya, the spinal fusion was the > > > worst thing we've ever lived through. I DO NOT want to go thru > > > another one of those any time soon, so honestly I don't know if > > > we'll do GH or not. After the spinal fusion, he spent 2 weeks in > > > the hospital, 4 months in a full body cast, then 1 year in a > > brace. > > > It was not fun at all. > > > > > > If you'd like any more info regarding his scoli or surgery, etc., > > > please feel free to email me privately. I have not found many RSS > > > kids with the scoli has, so I'm always happy to find > > someone > > > else in my shoes. > > > > > > Cheryl > > > Mom to , , and - all 5-1/2 years old > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 10 > > Date: Wed, 17 Sep 2003 01:22:43 -0000 > > From: " jooanna " > > Subject: Re: Scoliosis > > > > > > hi my daughter has conginital scoliosis but i do know alittle about > > idiopathic scoliosis which is most likeally what your son has since > > they cant find and cause for it. i do know it is most common in > > teens or it can be caused by weak trunk muscles as well. when they > > grow it progresses but htey cant explian why some do and some stay > > stable. i do know that growth homrmones cna agrovate pre exsisting > > curves which is partially why katie has not started yet. > > > > joanna > > katelynn 5 1\2 vaters RSS > > austin vaters > > > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 11 > > Date: Wed, 17 Sep 2003 01:50:16 -0000 > > From: " sissakt " > > Subject: GROWTH HORMONE MOMS > > > > Hi all > > It is , mom to Maddison. Thanks for all the advice and info. > > Just another question. Number 1)Did anyone have an MRI before > > starting? Because today they told me she would have to be sedated > > for the 45minute MRI and I was shocked and scared. Number 2) How > > different is sedation or anesthia (they aren't do it I don't think) > > for our kids because of their size and is there any special thing I > > need to tell the doctors who do it to take into consideration? > > Number 3) Also the thing about being gh deficient or not, I am > > totally lost on and does it matter for gh? Number 4) which hand are > > the supposed to do the bone age x-ray on? Number 5)What side > > effects comes with gh,how will we know if the dose if too much or > > too strong, like for example when you start periactin, they have to > > adjust to being sleepy, and did they help anyones appetite, because > > she is almost 3 and still doesn't feed herself? > > > > > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 12 > > Date: Tue, 16 Sep 2003 21:55:34 -0500 > > From: Jovanovich > > Subject: Re: GROWTH HORMONE MOMS > > > > Hi , > > > > Sedation is kind of like a sleeping pill. Janelle always had it done as a > > suppository. (she had A LOT of MRI'S) She would get sleepy and fall into > a > > deep sleep. They usually like to have this done npo if there is reflux or > > at least clear liquids. Make sure they are prepared to keep Maddison's > blood > > sugar levels up if she is prone to hypoglycemia. Hope this helps. > > > > J > > > > > From: " sissakt " > > > Reply-To: RSS-Support > > > Date: Wed, 17 Sep 2003 01:50:16 -0000 > > > To: RSS-Support > > > Subject: GROWTH HORMONE MOMS > > > > > > Hi all > > > It is , mom to Maddison. Thanks for all the advice and info. > > > Just another question. Number 1)Did anyone have an MRI before > > > starting? Because today they told me she would have to be sedated > > > for the 45minute MRI and I was shocked and scared. Number 2) How > > > different is sedation or anesthia (they aren't do it I don't think) > > > for our kids because of their size and is there any special thing I > > > need to tell the doctors who do it to take into consideration? > > > Number 3) Also the thing about being gh deficient or not, I am > > > totally lost on and does it matter for gh? Number 4) which hand are > > > the supposed to do the bone age x-ray on? Number 5)What side > > > effects comes with gh,how will we know if the dose if too much or > > > too strong, like for example when you start periactin, they have to > > > adjust to being sleepy, and did they help anyones appetite, because > > > she is almost 3 and still doesn't feed herself? > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 if u are concerned about scoliosis some of th ethings to look for are lopsided shoulder blades,uneven hips,popping ribs,and uneven niples. sometimes if the curve is bad enough around 20 degrees u can see the curve by having him bend over and touch his toes if it is night in a straight line there probally is a crve. a x ray will show any curves that might be present plus nad boney abnorality as well that might be cuasing it. if he has any vertebre abnoralities u mighta sk for aspinal mri tomake shure ther are no spinal defects that are hidden. other whise a reg x ray will be sufficiant. joanna > > > Hi , > > > > > > My son, , has congenital scoliosis in addition to his RSS. > > > He was diagnosed at about 18 months, and underwent a spinal fusion > > > last January at age 4. He had over a 60 degree curve in his spine > > > and they fused T11, T12, and L1. Our goal in fusing was not so > > much > > > to correct the curve, but to prevent the areas above it and below > > > from curving. So far, we're doing OK, but it's only been 18 months > > > since the fusion. is not on growth hormone, but is pretty > > > close to being ready for it. I'm trying to hold off on GH as long > > > as possible because noone can give me any clear answers as to what > > > it will do to his spine. I'm REAL concerned that it will make his > > > torso area grow at a rapid rate, which will mean he'll need another > > > spinal fusion sooner than later. has had 9 surgeries and > > > many other tests, etc., and I'll tell ya, the spinal fusion was the > > > worst thing we've ever lived through. I DO NOT want to go thru > > > another one of those any time soon, so honestly I don't know if > > > we'll do GH or not. After the spinal fusion, he spent 2 weeks in > > > the hospital, 4 months in a full body cast, then 1 year in a > > brace. > > > It was not fun at all. > > > > > > If you'd like any more info regarding his scoli or surgery, etc., > > > please feel free to email me privately. I have not found many RSS > > > kids with the scoli has, so I'm always happy to find > > someone > > > else in my shoes. > > > > > > Cheryl > > > Mom to , , and - all 5-1/2 years old > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 10 > > Date: Wed, 17 Sep 2003 01:22:43 -0000 > > From: " jooanna " > > Subject: Re: Scoliosis > > > > > > hi my daughter has conginital scoliosis but i do know alittle about > > idiopathic scoliosis which is most likeally what your son has since > > they cant find and cause for it. i do know it is most common in > > teens or it can be caused by weak trunk muscles as well. when they > > grow it progresses but htey cant explian why some do and some stay > > stable. i do know that growth homrmones cna agrovate pre exsisting > > curves which is partially why katie has not started yet. > > > > joanna > > katelynn 5 1\2 vaters RSS > > austin vaters > > > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 11 > > Date: Wed, 17 Sep 2003 01:50:16 -0000 > > From: " sissakt " > > Subject: GROWTH HORMONE MOMS > > > > Hi all > > It is , mom to Maddison. Thanks for all the advice and info. > > Just another question. Number 1)Did anyone have an MRI before > > starting? Because today they told me she would have to be sedated > > for the 45minute MRI and I was shocked and scared. Number 2) How > > different is sedation or anesthia (they aren't do it I don't think) > > for our kids because of their size and is there any special thing I > > need to tell the doctors who do it to take into consideration? > > Number 3) Also the thing about being gh deficient or not, I am > > totally lost on and does it matter for gh? Number 4) which hand are > > the supposed to do the bone age x-ray on? Number 5)What side > > effects comes with gh,how will we know if the dose if too much or > > too strong, like for example when you start periactin, they have to > > adjust to being sleepy, and did they help anyones appetite, because > > she is almost 3 and still doesn't feed herself? > > > > > > > > > > > > ______________________________________________________________________ __ > > ______________________________________________________________________ __ > > > > Message: 12 > > Date: Tue, 16 Sep 2003 21:55:34 -0500 > > From: Jovanovich > > Subject: Re: GROWTH HORMONE MOMS > > > > Hi , > > > > Sedation is kind of like a sleeping pill. Janelle always had it done as a > > suppository. (she had A LOT of MRI'S) She would get sleepy and fall into > a > > deep sleep. They usually like to have this done npo if there is reflux or > > at least clear liquids. Make sure they are prepared to keep Maddison's > blood > > sugar levels up if she is prone to hypoglycemia. Hope this helps. > > > > J > > > > > From: " sissakt " > > > Reply-To: RSS-Support > > > Date: Wed, 17 Sep 2003 01:50:16 -0000 > > > To: RSS-Support > > > Subject: GROWTH HORMONE MOMS > > > > > > Hi all > > > It is , mom to Maddison. Thanks for all the advice and info. > > > Just another question. Number 1)Did anyone have an MRI before > > > starting? Because today they told me she would have to be sedated > > > for the 45minute MRI and I was shocked and scared. Number 2) How > > > different is sedation or anesthia (they aren't do it I don't think) > > > for our kids because of their size and is there any special thing I > > > need to tell the doctors who do it to take into consideration? > > > Number 3) Also the thing about being gh deficient or not, I am > > > totally lost on and does it matter for gh? Number 4) which hand are > > > the supposed to do the bone age x-ray on? Number 5)What side > > > effects comes with gh,how will we know if the dose if too much or > > > too strong, like for example when you start periactin, they have to > > > adjust to being sleepy, and did they help anyones appetite, because > > > she is almost 3 and still doesn't feed herself? > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 , With my son, it was quite obvious his back was curving. I could see it clearly, especially when I gave him a bath. His left side was bulging out, and his right side was incurving. I could feel and see the spine curving. Usually pediatricians look for this at the child's annual check-up. If not, you could always look to see an orthopaedic dr. and have it checked. They can see any curving thru x-rays. If there was a curve, they might order an MRI to see if there's any disfigurement to the spine. Take a look yourself at the bottom of your child's shoes. That can give you some answers. See if one shoe is more worn down than the other. My brother has scoliosis, and his left shoe always wears out before his right. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 , With my son, it was quite obvious his back was curving. I could see it clearly, especially when I gave him a bath. His left side was bulging out, and his right side was incurving. I could feel and see the spine curving. Usually pediatricians look for this at the child's annual check-up. If not, you could always look to see an orthopaedic dr. and have it checked. They can see any curving thru x-rays. If there was a curve, they might order an MRI to see if there's any disfigurement to the spine. Take a look yourself at the bottom of your child's shoes. That can give you some answers. See if one shoe is more worn down than the other. My brother has scoliosis, and his left shoe always wears out before his right. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Hi Joanna, They only fused from the back. The full body cast started from the chest and went down to both knees, with an opening in the crotch and buttocks. It was mainly to protect the spine. It takes a long time for a fusion to take - for us it took about a year. They didn't want any twisting nor weight bearing. We spent a lot of time lugging him around, or wheeling him in a special wheel chair or little red wagon. Hope this helps. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 thanks for the information when aktie has hers it will anterior and posterior. hopefully sinc she is growing os sloweally we can wait another yr or 2. joanna > Hi Joanna, > > They only fused from the back. The full body cast started from the > chest and went down to both knees, with an opening in the crotch and > buttocks. It was mainly to protect the spine. It takes a long time > for a fusion to take - for us it took about a year. They didn't > want any twisting nor weight bearing. We spent a lot of time > lugging him around, or wheeling him in a special wheel chair or > little red wagon. Hope this helps. > > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 thanks for the information when aktie has hers it will anterior and posterior. hopefully sinc she is growing os sloweally we can wait another yr or 2. joanna > Hi Joanna, > > They only fused from the back. The full body cast started from the > chest and went down to both knees, with an opening in the crotch and > buttocks. It was mainly to protect the spine. It takes a long time > for a fusion to take - for us it took about a year. They didn't > want any twisting nor weight bearing. We spent a lot of time > lugging him around, or wheeling him in a special wheel chair or > little red wagon. Hope this helps. > > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2003 Report Share Posted September 18, 2003 - Our pediatric orthopedist here in LA (who doesn't know Dr. Harbison) told us that the growth hormone would not " cause " scoliosis, but might speed up the timing of when it would occur. Scoliosis most often becomes visible in the teenage years, when a child suddenly goes from growing 2 inches a year, to a much faster rate of growth. He said that kids on growth hormone who would probably get scoliosis in their teenage years normally, might get it earlier when they are on growth hormone and suddenly growing at 4 inches a year instead of 2. Hope this makes sense. I am sorry to hear about -- I remember when Dr. H commented on it, and definitely set off alarms in my head about my own daughter (who has asymmetry of the left leg/hip). > Hi! I'm a new member to this support list, but not new to the magic > foundation. I attended the July conference and scoliosis in RSS kids > was briefly mentioned. Last month, my son , who is 7, was > diagnosed with pretty advanced scoliosis. The suprising thing is > that he was examined just six months ago by the orthopedic surgeon > who he has been seeing every six months since he was about 4 and the > scoliosis was not prevalent. My husband and I had noticed that our > son's back was beginning to look " swayed " a few months ago when we > saw him in a swimsuit. It appears that this scoliosis advanced > rapidly in just a period of six months. His doctor was very > concerned at the rapid advance and had an MRI done, which showed that > there are no abnormalities with his spine. Our doctor has prescribed > bracing for at least 16 hours a day, and will need surgery to > correct it in the future. We suspect that 's " accellerated " > advancement of scoliosis may be due to taking growth hormone. He has > been on humatrope growth hormone for 5 years. He has been growing at > a very fast rate, especially in the last year. Has anyone else had a > young child diagnosed with scoliosis that has also been on growth > hormone? I'd love to discuss this further. DeMeyer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2004 Report Share Posted January 25, 2004 Gaby has had a mild scoliosis for some time now, mainly due to low tone. She has had a dislocated hip (which was operated on last september), and since then her scoliosis has deteriorated further. We are currently in the process of seeing anothe Dr to discuss either a back brace or surgery ne, mum to Gaby aged 8 1/2 years, PDH Quote Link to comment Share on other sites More sharing options...
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