Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 I got this from a member of an SMA group on Google. That group is mostly made up of parents with kids who have SMA. A woman who has a little girl with SMA got PT home visits now. Her mom told the PT about the contractions in the little girls hips and knees and BOTOX is what the PT recommended. I've copied her group post below: " ...the PT told me how they use botox in kids with CP to relax the muscles so they can be stretched. This is the first time I had heard about this. Then I instantly thought you don't want to mess with what little muscle our SMA kids have to work with. So, my question is: has anyone else heard of this being done with SMA kids? I am thinking no, but wanted to ask. I googled it and found nothing about SMA kids just CP kids. " Now, I've never heard of Botox being used to treat contractions. Have any of you? Couldn't this be harmful for kids/adults with SMA??? Comments? Blessings, Maggie ( " Meg " ) W. * " Your Approval of Me is Not needed, desired nor required, but I will take your Acceptance! " * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Hi,  I was at a seminar once and a doctor who was there speaking about BOTOX specifically said that it was not to be used on pregnant women or people with neuromuscular disorders. So, I would say definitely stay away from it based on what I learned in that seminar.  Tania   From: Maggie W. <areby77@...> Subject: BOTOX for SMA " " < > Received: Saturday, August 27, 2011, 1:05 PM  I got this from a member of an SMA group on Google. That group is mostly made up of parents with kids who have SMA. A woman who has a little girl with SMA got PT home visits now. Her mom told the PT about the contractions in the little girls hips and knees and BOTOX is what the PT recommended. I've copied her group post below: " ...the PT told me how they use botox in kids with CP to relax the muscles so they can be stretched. This is the first time I had heard about this. Then I instantly thought you don't want to mess with what little muscle our SMA kids have to work with. So, my question is: has anyone else heard of this being done with SMA kids? I am thinking no, but wanted to ask. I googled it and found nothing about SMA kids just CP kids. " Now, I've never heard of Botox being used to treat contractions. Have any of you? Couldn't this be harmful for kids/adults with SMA??? Comments? Blessings, Maggie ( " Meg " ) W. * " Your Approval of Me is Not needed, desired nor required, but I will take your Acceptance! " * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 Let me put a huge NO NO NO NO NO here in this discussion. I knew of two other children with SMA who had botox done for contractures before we opted to use botox on Tabitha's salivary glands. I knew of these kids because they had severe side effects from their injections. Both suffered generalized weakness (like someone with SMA needs that) after their botox treatments that lasted for months. We decided to do botox to lessen Tabitha's production of saliva to help reduce recurrent pneumonias and choking episodes. We knew of a few others that had had botox injections for contractures and had some significant side effects, but we figured since the dose for salivary glands was miniscule compared to the dose for contractures, the risk of the same side effect happening was small. We had data that this treatment had been very effective in the ALS community and hoped it would be the same for Tabitha. As you might have guessed, Tabitha started showing increased weakness a few days after the treatment and because the effect of the botox increases for several days we watched her lose more and more function. At the peak of her weakness, she couldn't keep her eyes open, could barely twitch her fingers and had lost her ability to smile. It was awful. Our specialist who is also one of the foremost researchers of SMA right now, Dr. Swoboda, moved mountains to get her an experimental medication flown in overnight from out of state. With the application of that medication we, it stopped the progression of weakness, but it took several months for Tabitha's strength to slowly work back to normal. Dr. Swoboda said she will never use botox or recommend botox for another SMA patient and strongly suggests others follow suit. There is just too much to lose. You can read the whole story on my blog. Just go to the archives on lower right side and find the post titled " Regret " in October of 2009. www.monicathemighty.blogspot.com On Sat, Aug 27, 2011 at 11:35 AM, Tania Sala <tssala@...> wrote: > ** > > > Hi, > > I was at a seminar once and a doctor who was there speaking about BOTOX > specifically said that it was not to be used on pregnant women or people > with neuromuscular disorders. So, I would say definitely stay away from it > based on what I learned in that seminar. > > Tania > > > > > > From: Maggie W. <areby77@...> > Subject: BOTOX for SMA > " " < > > Received: Saturday, August 27, 2011, 1:05 PM > > > > > I got this from a member of an SMA group on Google. That group is mostly > made up of parents with kids who have SMA. A woman who has a little girl > with SMA got PT home visits now. Her mom told the PT about the contractions > in the little girls hips and knees and BOTOX is what the PT recommended. > I've copied her group post below: > > " ...the PT told me how they use botox in kids with CP to relax the muscles > so they can be stretched. This is the first time I had heard about this. > Then I instantly thought you don't want to mess with what little muscle our > SMA kids have to work with. > So, my question is: has anyone else heard of this being done with SMA kids? > I am thinking no, but wanted to ask. I googled it and found nothing about > SMA kids just CP kids. " > > Now, I've never heard of Botox being used to treat contractions. > > Have any of you? Couldn't this be harmful for kids/adults with SMA??? > > Comments? > > Blessings, > Maggie ( " Meg " ) W. > > * " Your Approval of Me is Not needed, desired nor required, but I will take > your Acceptance! " * > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2011 Report Share Posted August 27, 2011 BTW, feel free to copy and past my response for the other group, or just give them my e-mail if they want more info. On Sat, Aug 27, 2011 at 2:54 PM, <monicathemighty@...> wrote: > Let me put a huge NO NO NO NO NO here in this discussion. > > I knew of two other children with SMA who had botox done for contractures > before we opted to use botox on Tabitha's salivary glands. I knew of these > kids because they had severe side effects from their injections. Both > suffered generalized weakness (like someone with SMA needs that) after their > botox treatments that lasted for months. > > We decided to do botox to lessen Tabitha's production of saliva to help > reduce recurrent pneumonias and choking episodes. We knew of a few others > that had had botox injections for contractures and had some significant side > effects, but we figured since the dose for salivary glands was miniscule > compared to the dose for contractures, the risk of the same side effect > happening was small. We had data that this treatment had been very > effective in the ALS community and hoped it would be the same for Tabitha. > > As you might have guessed, Tabitha started showing increased weakness a few > days after the treatment and because the effect of the botox increases for > several days we watched her lose more and more function. At the peak of her > weakness, she couldn't keep her eyes open, could barely twitch her fingers > and had lost her ability to smile. It was awful. > > Our specialist who is also one of the foremost researchers of SMA right > now, Dr. Swoboda, moved mountains to get her an experimental > medication flown in overnight from out of state. With the application of > that medication we, it stopped the progression of weakness, but it took > several months for Tabitha's strength to slowly work back to normal. > > Dr. Swoboda said she will never use botox or recommend botox for another > SMA patient and strongly suggests others follow suit. There is just too > much to lose. > > You can read the whole story on my blog. Just go to the archives on lower > right side and find the post titled " Regret " in October of 2009. > www.monicathemighty.blogspot.com > > > > > On Sat, Aug 27, 2011 at 11:35 AM, Tania Sala <tssala@...> wrote: > >> ** >> >> >> Hi, >> >> I was at a seminar once and a doctor who was there speaking about BOTOX >> specifically said that it was not to be used on pregnant women or people >> with neuromuscular disorders. So, I would say definitely stay away from it >> based on what I learned in that seminar. >> >> Tania >> >> >> >> >> >> From: Maggie W. <areby77@...> >> Subject: BOTOX for SMA >> " " < > >> Received: Saturday, August 27, 2011, 1:05 PM >> >> >> >> >> I got this from a member of an SMA group on Google. That group is mostly >> made up of parents with kids who have SMA. A woman who has a little girl >> with SMA got PT home visits now. Her mom told the PT about the contractions >> in the little girls hips and knees and BOTOX is what the PT recommended. >> I've copied her group post below: >> >> " ...the PT told me how they use botox in kids with CP to relax the muscles >> so they can be stretched. This is the first time I had heard about this. >> Then I instantly thought you don't want to mess with what little muscle our >> SMA kids have to work with. >> So, my question is: has anyone else heard of this being done with SMA >> kids? I am thinking no, but wanted to ask. I googled it and found nothing >> about SMA kids just CP kids. " >> >> Now, I've never heard of Botox being used to treat contractions. >> >> Have any of you? Couldn't this be harmful for kids/adults with SMA??? >> >> Comments? >> >> Blessings, >> Maggie ( " Meg " ) W. >> >> * " Your Approval of Me is Not needed, desired nor required, but I will take >> your Acceptance! " * >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2011 Report Share Posted August 28, 2011 Thank you for all the info. I'll post it in the other group and I'll give them your email. There are a lot of parents who aren't sure what to do at this point with the Botox option. Thanks again! Blessings, Maggie ( " Meg " ) W. * " Your Approval of Me is Not needed, desired nor required, but I will take your Acceptance! " * On Aug 27, 2011, at 4:16 PM, <monicathemighty@...> wrote: > BTW, feel free to copy and past my response for the other group, or just > give them my e-mail if they want more info. > > > > On Sat, Aug 27, 2011 at 2:54 PM, <monicathemighty@...> wrote: > >> Let me put a huge NO NO NO NO NO here in this discussion. >> >> I knew of two other children with SMA who had botox done for contractures >> before we opted to use botox on Tabitha's salivary glands. I knew of these >> kids because they had severe side effects from their injections. Both >> suffered generalized weakness (like someone with SMA needs that) after their >> botox treatments that lasted for months. >> >> We decided to do botox to lessen Tabitha's production of saliva to help >> reduce recurrent pneumonias and choking episodes. We knew of a few others >> that had had botox injections for contractures and had some significant side >> effects, but we figured since the dose for salivary glands was miniscule >> compared to the dose for contractures, the risk of the same side effect >> happening was small. We had data that this treatment had been very >> effective in the ALS community and hoped it would be the same for Tabitha. >> >> As you might have guessed, Tabitha started showing increased weakness a few >> days after the treatment and because the effect of the botox increases for >> several days we watched her lose more and more function. At the peak of her >> weakness, she couldn't keep her eyes open, could barely twitch her fingers >> and had lost her ability to smile. It was awful. >> >> Our specialist who is also one of the foremost researchers of SMA right >> now, Dr. Swoboda, moved mountains to get her an experimental >> medication flown in overnight from out of state. With the application of >> that medication we, it stopped the progression of weakness, but it took >> several months for Tabitha's strength to slowly work back to normal. >> >> Dr. Swoboda said she will never use botox or recommend botox for another >> SMA patient and strongly suggests others follow suit. There is just too >> much to lose. >> >> You can read the whole story on my blog. Just go to the archives on lower >> right side and find the post titled " Regret " in October of 2009. >> www.monicathemighty.blogspot.com >> >> >> >> >> On Sat, Aug 27, 2011 at 11:35 AM, Tania Sala <tssala@...> wrote: >> >>> ** >>> >>> >>> Hi, >>> >>> I was at a seminar once and a doctor who was there speaking about BOTOX >>> specifically said that it was not to be used on pregnant women or people >>> with neuromuscular disorders. So, I would say definitely stay away from it >>> based on what I learned in that seminar. >>> >>> Tania >>> >>> >>> >>> >>> >>> From: Maggie W. <areby77@...> >>> Subject: BOTOX for SMA >>> " " < > >>> Received: Saturday, August 27, 2011, 1:05 PM >>> >>> >>> >>> >>> I got this from a member of an SMA group on Google. That group is mostly >>> made up of parents with kids who have SMA. A woman who has a little girl >>> with SMA got PT home visits now. Her mom told the PT about the contractions >>> in the little girls hips and knees and BOTOX is what the PT recommended. >>> I've copied her group post below: >>> >>> " ...the PT told me how they use botox in kids with CP to relax the muscles >>> so they can be stretched. This is the first time I had heard about this. >>> Then I instantly thought you don't want to mess with what little muscle our >>> SMA kids have to work with. >>> So, my question is: has anyone else heard of this being done with SMA >>> kids? I am thinking no, but wanted to ask. I googled it and found nothing >>> about SMA kids just CP kids. " >>> >>> Now, I've never heard of Botox being used to treat contractions. >>> >>> Have any of you? Couldn't this be harmful for kids/adults with SMA??? >>> >>> Comments? >>> >>> Blessings, >>> Maggie ( " Meg " ) W. >>> >>> * " Your Approval of Me is Not needed, desired nor required, but I will take >>> your Acceptance! " * >>> >>> Quote Link to comment Share on other sites More sharing options...
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