Guest guest Posted July 12, 2005 Report Share Posted July 12, 2005 Hi It is In Boston how are you? I have a question bout the casting Kylie went thru What happended after 2 casts to her skin? Was it open sores? Could you tell after the 1st cast was removed? The reason I ask is Adan has had some red heat rashes ans I wonder if this is a sign of trouble ahead?? Thanks Hope all is well Lether <nlether@...> wrote: Hi Deborah,My name is and my 7yr old daughter, Kylie wasborn with idiopathic infantile scoliosis. Herscoliosis is severe with severe twisting. She has an"S" curve. Kylie has undergone many differenttreatments. She's worn TLSO's, plaster Risser casts,2 halo gravity tractions, growth rods, plaster Rissercasts with neck support, and now a custom brace withneck support. After her 1st halo traction corrected her from 70 to24 degrees, she had growth rods applied. The growthrods worked great for 2 1/2 yrs. It took her about aweek of recovery time. The first day was the hardestfor me, wondering if we had made the right decision. Every 6 mon. she would go in to have the rodsexpanded. This took about 1 to 1 1/2 hrs. They wouldsurgically open a small area of her back, at thebottom of where the rods were to expand them. Shewould recover from that in about a day. The rods heldher spine great. About 2 yrs. into the rods, Kyliedeveloped kyphosis above the growth rods. Because herkyphosis was up high almost in the neck area, the rodshad to be discontinued. We were devastated, this wasthe first treatment that held correction in her spinefor so long. I'm not sure what or how much info you have on thegrowth rods. I would be happy to answer any otherquestions you have. In the 2 years Kylie had them,our experience was great. I have also herd of somecases where the rods were dislodged many times andsome that have even broke in half. Kylie did have tobe very careful in what she did, to prevent thesethings from happening. She wore a non-correctivebrace during the day which made her unable to dobending to protect the rods.Have you looked into serial casting with plaster? Thisis another great treatment.I'm not sure if your daughter has congenital oridiopathic scoliosis. Idiopathic cases usually benefitthe most from this treatment. There are a lot of kidson this group who have greatly benefited from plastercasting. Kylie unfortunately isn't one of them. Herspine is too twisted and rigid to benefit. Her skinis too sensitive to handle more than 2 casts in a row.As far as info on the "Vepter", there are parents onthis group who have kids with this treatment. Theywould love to answer your questions you have about it.Not all treatments work the same on all kids. I hopeyou find the treatment that works the best for yourdaughter.Let me know if I can answer any other questions.Later,--- Deborah Salter <jsalt1@...> wrote:> My 5 yr old daughter was seen yesterday by her> pediatric orthopaedist and we were told that her> TLSO is not helping her scoliosis C curve. He said> we needed to go to the second step in treatment> which is inserting "growth rods". He said that he> doesn't feel like Vepter or Titanium Rods would be> an option for her because her best lung is her left> lung and the concave side is the left side although> the right side is the lung side that is being> compressed. Anyway, I was wondering if anyone here> has experience with Growth Rods or the other> procedure he mentioned. I don't fully understand> about the Vepter procedure and why he said it> wouldn't work well for her. I saw on the xray of> her spine/chest that her left ribs are spaced far> apart and there is alot of lung space on that side> and her right ribs are very close together and are> pointed downward instead of across her body with> very little lung space. Any comments, suggestions,> information based on experience, etc. would be> appreciated. > > Thanks,> > Deb in GA.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Hi , Kylie has very sensetive skin. When they cut the 1st cast off it was in the operating room. I did not get to see her skin after they cut it off. They said that her hip bones were the only area that was starting to show skin break down. They applied extra padding for the hips in the second cast. The 2nd cast came off in the outpatient clinic. Her hip bones were rubbed so raw, they had been bleeding and the undershirt was stuck to them. Kylie has a huge rib hump on her left side, thats also where her kyphosis starts, that was severly broke down too. Her skin was attatched to the undershirt. We didn't know that until we pulled the undershirt off. It ripped her skin off in that area. All of her skin was very red. Kylie never once said that the cast was hurting anywhere. Kylie's casts have always been a whole lot thicker and they have to apply a lot of pressure to pull correction because her spine is so stiff. I've been told that the thickness of the cast could prevent any possible airflow to the skin and all the pressure they have to use to get her spine to budge doesn't help either. I would definately keep an eye on it just in case. Kylie seems to always be " the one " to have something unusual happen! Take Care, --- <christinehrph@...> wrote: > Hi > > It is In Boston how are you? > I have a question bout the casting Kylie went thru > What happended after 2 casts to her skin? Was it > open sores? Could you tell after the 1st cast was > removed? > > The reason I ask is Adan has had some red heat > rashes ans I wonder if this is a sign of trouble > ahead?? > > Thanks > Hope all is well > > > Lether <nlether@...> wrote: > Hi Deborah, > > My name is and my 7yr old daughter, Kylie > was > born with idiopathic infantile scoliosis. Her > scoliosis is severe with severe twisting. She has an > " S " curve. Kylie has undergone many different > treatments. She's worn TLSO's, plaster Risser > casts, > 2 halo gravity tractions, growth rods, plaster > Risser > casts with neck support, and now a custom brace with > neck support. > > After her 1st halo traction corrected her from 70 to > 24 degrees, she had growth rods applied. The growth > rods worked great for 2 1/2 yrs. It took her about > a > week of recovery time. The first day was the > hardest > for me, wondering if we had made the right decision. > > Every 6 mon. she would go in to have the rods > expanded. This took about 1 to 1 1/2 hrs. They > would > surgically open a small area of her back, at the > bottom of where the rods were to expand them. She > would recover from that in about a day. The rods > held > her spine great. About 2 yrs. into the rods, Kylie > developed kyphosis above the growth rods. Because > her > kyphosis was up high almost in the neck area, the > rods > had to be discontinued. We were devastated, this > was > the first treatment that held correction in her > spine > for so long. > > I'm not sure what or how much info you have on the > growth rods. I would be happy to answer any other > questions you have. In the 2 years Kylie had them, > our experience was great. I have also herd of some > cases where the rods were dislodged many times and > some that have even broke in half. Kylie did have > to > be very careful in what she did, to prevent these > things from happening. She wore a non-corrective > brace during the day which made her unable to do > bending to protect the rods. > > Have you looked into serial casting with plaster? > This > is another great treatment. > I'm not sure if your daughter has congenital or > idiopathic scoliosis. Idiopathic cases usually > benefit > the most from this treatment. There are a lot of > kids > on this group who have greatly benefited from > plaster > casting. Kylie unfortunately isn't one of them. Her > spine is too twisted and rigid to benefit. Her skin > is too sensitive to handle more than 2 casts in a > row. > > As far as info on the " Vepter " , there are parents on > this group who have kids with this treatment. They > would love to answer your questions you have about > it. > > Not all treatments work the same on all kids. I hope > you find the treatment that works the best for your > daughter. > > Let me know if I can answer any other questions. > > Later, > > > > --- Deborah Salter <jsalt1@...> wrote: > > > My 5 yr old daughter was seen yesterday by her > > pediatric orthopaedist and we were told that her > > TLSO is not helping her scoliosis C curve. He > said > > we needed to go to the second step in treatment > > which is inserting " growth rods " . He said that he > > doesn't feel like Vepter or Titanium Rods would be > > an option for her because her best lung is her > left > > lung and the concave side is the left side > although > > the right side is the lung side that is being > > compressed. Anyway, I was wondering if anyone > here > > has experience with Growth Rods or the other > > procedure he mentioned. I don't fully understand > > about the Vepter procedure and why he said it > > wouldn't work well for her. I saw on the xray of > > her spine/chest that her left ribs are spaced far > > apart and there is alot of lung space on that side > > and her right ribs are very close together and are > > pointed downward instead of across her body with > > very little lung space. Any comments, > suggestions, > > information based on experience, etc. would be > > appreciated. > > > > Thanks, > > > > Deb in GA. > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Sorry to hear that That must of been a tough experience Thanks for the info We are off to Utah for the 2nd cast tomorrow AM about 5 Wish us luck Lether <nlether@...> wrote: Hi ,Kylie has very sensetive skin. When they cut the 1stcast off it was in the operating room. I did not getto see her skin after they cut it off. They said thather hip bones were the only area that was starting toshow skin break down. They applied extra padding forthe hips in the second cast. The 2nd cast came off inthe outpatient clinic. Her hip bones were rubbed soraw, they had been bleeding and the undershirt wasstuck to them. Kylie has a huge rib hump on her leftside, thats also where her kyphosis starts, that wasseverly broke down too. Her skin was attatched to theundershirt. We didn't know that until we pulled theundershirt off. It ripped her skin off in that area. All of her skin was very red. Kylie never once saidthat the cast was hurting anywhere. Kylie's casts have always been a whole lot thicker andthey have to apply a lot of pressure to pullcorrection because her spine is so stiff. I've beentold that the thickness of the cast could prevent anypossible airflow to the skin and all the pressure theyhave to use to get her spine to budge doesn't helpeither. I would definately keep an eye on it just in case. Kylie seems to always be "the one" to have somethingunusual happen!Take Care,--- <christinehrph@...>wrote:> Hi > > It is In Boston how are you?> I have a question bout the casting Kylie went thru> What happended after 2 casts to her skin? Was it> open sores? Could you tell after the 1st cast was> removed?> > The reason I ask is Adan has had some red heat> rashes ans I wonder if this is a sign of trouble> ahead??> > Thanks> Hope all is well> > > Lether <nlether@...> wrote:> Hi Deborah,> > My name is and my 7yr old daughter, Kylie> was> born with idiopathic infantile scoliosis. Her> scoliosis is severe with severe twisting. She has an> "S" curve. Kylie has undergone many different> treatments. She's worn TLSO's, plaster Risser> casts,> 2 halo gravity tractions, growth rods, plaster> Risser> casts with neck support, and now a custom brace with> neck support. > > After her 1st halo traction corrected her from 70 to> 24 degrees, she had growth rods applied. The growth> rods worked great for 2 1/2 yrs. It took her about> a> week of recovery time. The first day was the> hardest> for me, wondering if we had made the right decision.> > Every 6 mon. she would go in to have the rods> expanded. This took about 1 to 1 1/2 hrs. They> would> surgically open a small area of her back, at the> bottom of where the rods were to expand them. She> would recover from that in about a day. The rods> held> her spine great. About 2 yrs. into the rods, Kylie> developed kyphosis above the growth rods. Because> her> kyphosis was up high almost in the neck area, the> rods> had to be discontinued. We were devastated, this> was> the first treatment that held correction in her> spine> for so long. > > I'm not sure what or how much info you have on the> growth rods. I would be happy to answer any other> questions you have. In the 2 years Kylie had them,> our experience was great. I have also herd of some> cases where the rods were dislodged many times and> some that have even broke in half. Kylie did have> to> be very careful in what she did, to prevent these> things from happening. She wore a non-corrective> brace during the day which made her unable to do> bending to protect the rods.> > Have you looked into serial casting with plaster?> This> is another great treatment.> I'm not sure if your daughter has congenital or> idiopathic scoliosis. Idiopathic cases usually> benefit> the most from this treatment. There are a lot of> kids> on this group who have greatly benefited from> plaster> casting. Kylie unfortunately isn't one of them. Her> spine is too twisted and rigid to benefit. Her skin> is too sensitive to handle more than 2 casts in a> row.> > As far as info on the "Vepter", there are parents on> this group who have kids with this treatment. They> would love to answer your questions you have about> it.> > Not all treatments work the same on all kids. I hope> you find the treatment that works the best for your> daughter.> > Let me know if I can answer any other questions.> > Later,> > > > --- Deborah Salter <jsalt1@...> wrote:> > > My 5 yr old daughter was seen yesterday by her> > pediatric orthopaedist and we were told that her> > TLSO is not helping her scoliosis C curve. He> said> > we needed to go to the second step in treatment> > which is inserting "growth rods". He said that he> > doesn't feel like Vepter or Titanium Rods would be> > an option for her because her best lung is her> left> > lung and the concave side is the left side> although> > the right side is the lung side that is being> > compressed. Anyway, I was wondering if anyone> here> > has experience with Growth Rods or the other> > procedure he mentioned. I don't fully understand> > about the Vepter procedure and why he said it> > wouldn't work well for her. I saw on the xray of> > her spine/chest that her left ribs are spaced far> > apart and there is alot of lung space on that side> > and her right ribs are very close together and are> > pointed downward instead of across her body with> > very little lung space. Any comments,> suggestions,> > information based on experience, etc. would be> > appreciated. > > > > Thanks,> > > > Deb in GA.> > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 Good luck ! Sorry, we kept missing eachother on the phone. Lets try again when you guys get home. Sincerely, HRH Re: Growth Rods Sorry to hear that That must of been a tough experience Thanks for the info We are off to Utah for the 2nd cast tomorrow AM about 5 Wish us luck Lether <nlether@...> wrote: Hi ,Kylie has very sensetive skin. When they cut the 1stcast off it was in the operating room. I did not getto see her skin after they cut it off. They said thather hip bones were the only area that was starting toshow skin break down. They applied extra padding forthe hips in the second cast. The 2nd cast came off inthe outpatient clinic. Her hip bones were rubbed soraw, they had been bleeding and the undershirt wasstuck to them. Kylie has a huge rib hump on her leftside, thats also where her kyphosis starts, that wasseverly broke down too. Her skin was attatched to theundershirt. We didn't know that until we pulled theundershirt off. It ripped her skin off in that area. All of her skin was very red. Kylie never once saidthat the cast was hurting anywhere. Kylie's casts have always been a whole lot thicker andthey have to apply a lot of pressure to pullcorrection because her spine is so stiff. I've beentold that the thickness of the cast could prevent anypossible airflow to the skin and all the pressure theyhave to use to get her spine to budge doesn't helpeither. I would definately keep an eye on it just in case. Kylie seems to always be "the one" to have somethingunusual happen!Take Care,--- <christinehrph@...>wrote:> Hi > > It is In Boston how are you?> I have a question bout the casting Kylie went thru> What happended after 2 casts to her skin? Was it> open sores? Could you tell after the 1st cast was> removed?> > The reason I ask is Adan has had some red heat> rashes ans I wonder if this is a sign of trouble> ahead??> > Thanks> Hope all is well> > > Lether <nlether@...> wrote:> Hi Deborah,> > My name is and my 7yr old daughter, Kylie> was> born with idiopathic infantile scoliosis. Her> scoliosis is severe with severe twisting. She has an> "S" curve. Kylie has undergone many different> treatments. She's worn TLSO's, plaster Risser> casts,> 2 halo gravity tractions, growth rods, plaster> Risser> casts with neck support, and now a custom brace with> neck support. > > After her 1st halo traction corrected her from 70 to> 24 degrees, she had growth rods applied. The growth> rods worked great for 2 1/2 yrs. It took her about> a> week of recovery time. The first day was the> hardest> for me, wondering if we had made the right decision.> > Every 6 mon. she would go in to have the rods> expanded. This took about 1 to 1 1/2 hrs. They> would> surgically open a small area of her back, at the> bottom of where the rods were to expand them. She> would recover from that in about a day. The rods> held> her spine great. About 2 yrs. into the rods, Kylie> developed kyphosis above the growth rods. Because> her> kyphosis was up high almost in the neck area, the> rods> had to be discontinued. We were devastated, this> was> the first treatment that held correction in her> spine> for so long. > > I'm not sure what or how much info you have on the> growth rods. I would be happy to answer any other> questions you have. In the 2 years Kylie had them,> our experience was great. I have also herd of some> cases where the rods were dislodged many times and> some that have even broke in half. Kylie did have> to> be very careful in what she did, to prevent these> things from happening. She wore a non-corrective> brace during the day which made her unable to do> bending to protect the rods.> > Have you looked into serial casting with plaster?> This> is another great treatment.> I'm not sure if your daughter has congenital or> idiopathic scoliosis. Idiopathic cases usually> benefit> the most from this treatment. There are a lot of> kids> on this group who have greatly benefited from> plaster> casting. Kylie unfortunately isn't one of them. Her> spine is too twisted and rigid to benefit. Her skin> is too sensitive to handle more than 2 casts in a> row.> > As far as info on the "Vepter", there are parents on> this group who have kids with this treatment. They> would love to answer your questions you have about> it.> > Not all treatments work the same on all kids. I hope> you find the treatment that works the best for your> daughter.> > Let me know if I can answer any other questions.> > Later,> > > > --- Deborah Salter <jsalt1@...> wrote:> > > My 5 yr old daughter was seen yesterday by her> > pediatric orthopaedist and we were told that her> > TLSO is not helping her scoliosis C curve. He> said> > we needed to go to the second step in treatment> > which is inserting "growth rods". He said that he> > doesn't feel like Vepter or Titanium Rods would be> > an option for her because her best lung is her> left> > lung and the concave side is the left side> although> > the right side is the lung side that is being> > compressed. Anyway, I was wondering if anyone> here> > has experience with Growth Rods or the other> > procedure he mentioned. I don't fully understand> > about the Vepter procedure and why he said it> > wouldn't work well for her. I saw on the xray of> > her spine/chest that her left ribs are spaced far> > apart and there is alot of lung space on that side> > and her right ribs are very close together and are> > pointed downward instead of across her body with> > very little lung space. Any comments,> suggestions,> > information based on experience, etc. would be> > appreciated. > > > > Thanks,> > > > Deb in GA.> > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
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