Guest guest Posted July 1, 2004 Report Share Posted July 1, 2004 > I knew this site would have a bunch of avenues to check out > concerning my feet. You guys are great. Thanks to all for your > answers. I guess I'll just have to get to a podiatrist/neurologist > and check it out. > > Lois > Gross 8/6/03 Hey, : Weighing in late on the subject, but might I suggest checking in with a doctor who specializes in physical medicine before/in addition to a podiatrist/neurologist? I have found that a good physical medicine doc is a great place to begin for questions like these. Gross 5/26/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 Hi , I am so glad you have had a positive result on the second tenotomy and that you went with your gut. I think most doctors really hate to be wrong, and hate it even more when we question them. Good on you for sticking with it! Louisa 6-27-99 Zoe 2-22-04 RCF FAB 16/7 > > > Hi Everyone, > I have posted here only a few times, but I have read A LOT of posts > over the past few months and I just want to say " Thank you " to all > of you here. The information that I gathered here and all that I > learned from you about clubfoot and its treatment helped me to open > up a dialog with my son's doctor and, ultimately, avoid major > reconstructive surgery for him. > > My son, was born March 30 with a right unilateral clubfoot. We > went through all of the serial casting and he had his first tendon > release surgery in May. After getting the cast off, a series of > events resulted in a relapse and his foot and tendon were very > stiff. The next option presented to us was that of reconstructive > surgery. Reading the posts on this site combined with my own very > strong belief that my son did not have optimal conditions for the > first tenotomy to work, gave me the resolve to talk to my doctor and > explore the possibility of another tendon-release as an alternative > to major reconstructive surgery at this time. Well, my son's Dr. is > a true professional. She didn't let me just walk all over her. But > she openly and honestly discussed his situation with me. We took it > week by week beginning again with casts. And ultimately, she opted > for the second tendon release. It was done Aug. 27th and it did the > trick!! 's foot looked fabulous after 3 weeks when his cast was > removed. He's doing great with his DBB and we are feeling > unbelievable relief. > > This positive outcome would not have come about without the > wonderful dialog that goes on at these bulletin boards. So thank > you thank you thank you to all of you who invest your time. > > I also want to pass on a valuable lesson I've learned from this > experience. It is this: You are your child's best advocate. Never > forget that. You know him/her best. Go with your instincts and > never be afraid to ask questions. There is no one who looks after > the best interests of a child better than his/her parents. My > husband and I learned this lesson in a big way these past 7 months. > When faced with the possibility of surgery for our son, we decided > that whatever happened, we needed to be at peace with our decisions > because we are his guardians and protectors. What an awesome > responsibility. But I know that all of you here on this board are > up to the challenge and are succeeding at being wonderful parents > for your children. Keep up the wonderful work! > > Again, thank you from the bottom of my heart. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 , We're so glad things worked out well for your little one, thanks to your determination and effort. You have done a great job! You are absolutely right.. a parent needs to follow their gut instinct, as their child's strongest advocate. We had a similar experience. Thanks for sharing your story, and continued best wishes.. and Claire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2004 Report Share Posted November 2, 2004 !! GO YOU!! Glad to hear that is in the shoes and doing well. My Elijah was born March 26th w/ RCF and has followed about the same timeline as . He had his first release in May. He slipped out of the 3 wk cast due to having atypical club foot (plantaris). He couldnt stay in his shoes so in September, they did a 2nd release. His 2nd 3 wk cast came off Sept 29th and hes been in his DBB since! Lori Mom to 3 + Elijah 7 mo. RCF DBB 23/7 > > > Hi Everyone, > I have posted here only a few times, but I have read A LOT of posts > over the past few months and I just want to say " Thank you " to all > of you here. The information that I gathered here and all that I > learned from you about clubfoot and its treatment helped me to open > up a dialog with my son's doctor and, ultimately, avoid major > reconstructive surgery for him. > > My son, was born March 30 with a right unilateral clubfoot. We > went through all of the serial casting and he had his first tendon > release surgery in May. After getting the cast off, a series of > events resulted in a relapse and his foot and tendon were very > stiff. The next option presented to us was that of reconstructive > surgery. Reading the posts on this site combined with my own very > strong belief that my son did not have optimal conditions for the > first tenotomy to work, gave me the resolve to talk to my doctor and > explore the possibility of another tendon-release as an alternative > to major reconstructive surgery at this time. Well, my son's Dr. is > a true professional. She didn't let me just walk all over her. But > she openly and honestly discussed his situation with me. We took it > week by week beginning again with casts. And ultimately, she opted > for the second tendon release. It was done Aug. 27th and it did the > trick!! 's foot looked fabulous after 3 weeks when his cast was > removed. He's doing great with his DBB and we are feeling > unbelievable relief. > > This positive outcome would not have come about without the > wonderful dialog that goes on at these bulletin boards. So thank > you thank you thank you to all of you who invest your time. > > I also want to pass on a valuable lesson I've learned from this > experience. It is this: You are your child's best advocate. Never > forget that. You know him/her best. Go with your instincts and > never be afraid to ask questions. There is no one who looks after > the best interests of a child better than his/her parents. My > husband and I learned this lesson in a big way these past 7 months. > When faced with the possibility of surgery for our son, we decided > that whatever happened, we needed to be at peace with our decisions > because we are his guardians and protectors. What an awesome > responsibility. But I know that all of you here on this board are > up to the challenge and are succeeding at being wonderful parents > for your children. Keep up the wonderful work! > > Again, thank you from the bottom of my heart. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2006 Report Share Posted July 1, 2006 I want everyone in this group to know how much I admire each of you for your strength and courage during the difficult battle with Sarcoid and NeuroSarcoid you are all facing. I would never had had the courage to stand up and continuely fight with my doctors had it not been for reading your messages and learning how you each have dealt with this monster as each new symptom appeared. Since I happened upon this group almost a year ago I have learned so much about Sarcoid from this group and the links and data listed here that I am able to go to my doctors and not feel uninformed and completly at their disposal. For so long all I could do was to accept the treatment - now I can ask questions and make informed decisions about my treatment. So many of you are going through so much more than I am...Again I want you all to know how much I admire your courage. Sincerely with prayer Ruth Quote Link to comment Share on other sites More sharing options...
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