PuddleJumper1 Posted February 18, 2015 Share Posted February 18, 2015 The doctor is recommending this for youngest ds for tight heel cords. I have no experience with this treatment protocol. Ds has had serial casting twice a year for the last several years. For those that don't know - serial casting is when they put a cast on that is removed several days later and new one put on holding the heel in position to stretch the tendon/muscle. For us that usually goes on for about 3 - 5 weeks. That has helped stretch the heel cords with nothing else needed. This time, however, he is very tight and the stretching didn't last as long. Hence, the Botox recommendation. They are planning to do it in the office but we have the option of doing it under sedation. Not knowing how painful it is I have no idea which is best for ds. If you've ever used this treatment for your child (or even yourself) I'd love some BTDT experience. Was it painful? Were there side effects? If you've ever had someone tell you not to use Botox for whatever reason I'd love to hear about that too. Thanks! Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted February 18, 2015 Share Posted February 18, 2015 While I don't have personal experience with it, I do know someone who did do it with her son. She had no regrets and last I heard would do it again. I know they did the serial casting and PT before. She did continue PT with botox. You probably already tried this but have you tried googling for blogs/blog posts on this? Quote Link to comment Share on other sites More sharing options...
texasmama Posted February 18, 2015 Share Posted February 18, 2015 Is this to address clubfoot? If so, where are you located? My younger dd was born with bilateral clubfoot, and I have been very active in the clubfoot community. Tight Achilles tendon is one of the issues associated with clubfoot, so I know more than I ever wanted to about this issue. Botox was done by one doctor in particular (located in Canada, I believe) with poor results and is spoken out against in the Ponseti method clubfoot community. I cannot speak to the use of Botox for any other condition other than clubfoot. My dd's Achilles tendon was quite short during a period of growth over a year ago, and she was in pain. I did stretches (on the advice of her doctor), and she wore nothing but supportive tennis shoes during that time. This was in Texas in the summer so it was HOT, but she was in socks and shoes all the time. She also was limited in her movements and did nothing involved jumping or running for a time until the pain passed. She did not play Upward basketball that year. Instead, she took piano lessons. I don't know if this is helpful to you, but there is a network of fabulous non surgical clubfoot specialists who might be able to help your child even if the issue is not clubfoot. If I knew where you were located, I could recommend someone, perhaps. Feel free to PM me, if you prefer. The bottom line for me is that I would get a second opinion from someone familiar with the Ponseti method before using Botox on my child. I would need quite a lot of convincing that it was the best course of action. Quote Link to comment Share on other sites More sharing options...
Carrie12345 Posted February 18, 2015 Share Posted February 18, 2015 No personal experience, but I follow the FB page for the child of former classmates. He has a rare condition that is causing his muscles to contract, and he gets regular Botox treatments for it. They started with sedation and eventually went to just numbing cream. They haven't mentioned any negative side effects. Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted February 18, 2015 Share Posted February 18, 2015 Ditto what they've said up above. For foot drop due to neurological damage, Botox was helpful....shots were scheduled 6 months apart. It was a long wait for the first appointment, so once you got in to the shot cycle, you stayed in appointment rotation. The first slot took over 6 months to get in....in office, no sedation. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted February 18, 2015 Share Posted February 18, 2015 :bigear: DS currently wears DAFO braces each night for tight heal cords. Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted February 18, 2015 Share Posted February 18, 2015 I've had botox for medical reasons - before it was even in use for vanity reasons. it's no more painful than any other injection. (the pain varies by location of where a needle is being stuck with the density of nerves in the area.) what is the objective of the botox? it causes muscles to firm up, so I'm confused how that would help with his overly tight cord muscles. do they plan on doing one shot into the cord - or will the needle be moved around to different points? Quote Link to comment Share on other sites More sharing options...
wonderchica Posted February 18, 2015 Share Posted February 18, 2015 For kids I have known with tight heel cords, if if wears off too soon they won't do repeat treatments. I have known some kids who had surgery to have the cords released. Quote Link to comment Share on other sites More sharing options...
bethben Posted February 18, 2015 Share Posted February 18, 2015 My son started Botox treatments for tight hamstrings when he was 5. He was good to go for about 5 years and then he started a growth spurt. He has had botox treatments once a year for 5 years now. He can't really tell us if they're painful, but he's given laughing gas to calm him and he doesn't even flinch when they're happening. I know some kids have to have a light sedation. It takes a couple of weeks to see that it worked, but I can easily tell his muscles are much looser. Before, I could stretch his leg to around 120 degrees. Afterward, I can stretch his leg to close to 180 degrees. He does use knee immobilizers to keep his legs stretched out at night just to make the effects last longer. I know some kids have to have it repeated twice a year. It really does work for my child. We've had no side effects. I wouldn't hesitate to recommend it to someone else. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 Is this to address clubfoot? He's just got regular tight heel cords. No other foot issues except being flatfooted as a baby. They corrected that with AFOs No idea why the heels tighten but this guy has so many things going on there's no telling. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 While I don't have personal experience with it, I do know someone who did do it with her son. She had no regrets and last I heard would do it again. I know they did the serial casting and PT before. She did continue PT with botox. You probably already tried this but have you tried googling for blogs/blog posts on this? Thank you - good to hear they had no issues. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 Ditto what they've said up above. For foot drop due to neurological damage, Botox was helpful....shots were scheduled 6 months apart. It was a long wait for the first appointment, so once you got in to the shot cycle, you stayed in appointment rotation. The first slot took over 6 months to get in....in office, no sedation. Amazingly they have him down for March 6th. We can cancel and just go with the casting again if we decide not to do the botox. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 :bigear: DS currently wears DAFO braces each night for tight heal cords. Is it working well? I don't know why that hasn't been mentioned. It's a great alternative (to my way of thinking anyway) Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 I've had botox for medical reasons - before it was even in use for vanity reasons. it's no more painful than any other injection. (the pain varies by location of where a needle is being stuck with the density of nerves in the area.) what is the objective of the botox? it causes muscles to firm up, so I'm confused how that would help with his overly tight cord muscles. do they plan on doing one shot into the cord - or will the needle be moved around to different points? Interesting! The doctor said it helps to loosen the muscles. She did say it didn't work for everyone. I have no idea on placement but it is just one shot in each leg. Thanks for the note on the pain. He has no problem with regular shots so that shouldn't be an issue. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 For kids I have known with tight heel cords, if if wears off too soon they won't do repeat treatments. I have known some kids who had surgery to have the cords released. I honestly thought she was getting ready to suggest surgery. I will be sure to ask about the treatment if it doesn't work as they expect. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 18, 2015 Author Share Posted February 18, 2015 My son started Botox treatments for tight hamstrings when he was 5. He was good to go for about 5 years and then he started a growth spurt. He has had botox treatments once a year for 5 years now. He can't really tell us if they're painful, but he's given laughing gas to calm him and he doesn't even flinch when they're happening. I know some kids have to have a light sedation. It takes a couple of weeks to see that it worked, but I can easily tell his muscles are much looser. Before, I could stretch his leg to around 120 degrees. Afterward, I can stretch his leg to close to 180 degrees. He does use knee immobilizers to keep his legs stretched out at night just to make the effects last longer. I know some kids have to have it repeated twice a year. It really does work for my child. We've had no side effects. I wouldn't hesitate to recommend it to someone else. Thanks bethben! Exactly the btdt info I need. Quote Link to comment Share on other sites More sharing options...
Melissa in Australia Posted February 18, 2015 Share Posted February 18, 2015 I cannot comment on the Botox thing as I have no knowledge of it. Twin 1 has clubfoot and has been wearing AFOs for years. Just before we got him he had a 6 week stint of full leg casts. He has had several operations to loosen tight cords and will apparently need several more. This year he will need to have several more sessions of full leg casts. He wears his AFOs 24 hours a day, only removing them for bath time. He will possibly need to wear them until at least 14. HIs older sibling ( not in our care) has one of the worst cases of clubfoot that the Royal Children's Hospital has ever seen. Quote Link to comment Share on other sites More sharing options...
wonderchica Posted February 18, 2015 Share Posted February 18, 2015 They haven't done AFOs? That's surprising to me. I thought it was typical to start with those. Quote Link to comment Share on other sites More sharing options...
melmichigan Posted February 18, 2015 Share Posted February 18, 2015 Is it working well? I don't know why that hasn't been mentioned. It's a great alternative (to my way of thinking anyway) Yes, they are working well. He still toe walks, but he has the full range as of his last appointment. His DAFO's are adjustable, so we gradually increase the flexion over time, similar to serial casting. His only complaint is that they are warm. Our next option would be botox. The belief is that his toe walking is now just habit or sensory in nature. We aren't going to do anything else to correct it at this point, as long as he maintains full range of motion. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 19, 2015 Author Share Posted February 19, 2015 They haven't done AFOs? That's surprising to me. I thought it was typical to start with those. He wore AFOs for years from about 10 months but not for this issue. He needed the support to learn to walk. He graduated from those to a smaller insert. I'm going to ask if this is a possible treatment option for him. Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted February 19, 2015 Author Share Posted February 19, 2015 After doing online research and careful consideration we've decided not to pursue the Botox for now. Just too much potential risk for us to be comfortable with. I know the chance of a problem is rare but for ds, the possible benefit does not outweigh the possible risk. They're not even sure it will help. We will keep the idea in mind if this situation ever advances to the point of affecting his quality of life or ability to walk. We're going to go ahead with regular casting and ask about nighttime AFO wearing as melmichigan and wonderchica suggest. Thanks everyone so much for sharing your experiences and those of people you know. It's good to know the positive stories if we need to pursue this in the future. Quote Link to comment Share on other sites More sharing options...
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