Guest guest Posted December 14, 2004 Report Share Posted December 14, 2004 Forwarding this message from Nandini, which somehow came directly to me instead of the group Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Welcome, and congrats on twins!!! I found out about my daughters clubfoot at my 20 week u/s. I was devastated for several weeks, but realized I just needed to move forward. I did not have an amnio because it wasn't necessary. I did have another u/s at 30 weeks to make sure everything looked okay. All organs, etc measured okay, so I wasn't worried about any other deffect. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Welcome, and congrats on twins!!! I found out about my daughters clubfoot at my 20 week u/s. I was devastated for several weeks, but realized I just needed to move forward. I did not have an amnio because it wasn't necessary. I did have another u/s at 30 weeks to make sure everything looked okay. All organs, etc measured okay, so I wasn't worried about any other deffect. Shook Retail Operations Manager/Baking Instructor Vie de France Yamazaki, Inc. 2070 Chain Bridge Rd. Suite 500 Vienna, VA 22182 x374 x374 fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Congrats!! Twins!! What an exciting...and busy...time! LOL We found out about our bilateral clubbed feet at our 18 week ultrasound as well. We did not have twins, but it was also an isolated incident. We had to go through genetics counseling which we just ignored as it was very poorly done and they bring a whole lot of other problems that " could " be there which adds to the fear. Put that behind you and enjoy these twins to your fullest right now! My husband and I were " encouraged " to have the amnio and all triple tests done to find out if anything else was wrong. Since there was nothing they could do inside the womb at that time if something came up, we chose not to do those tests. It didn't matter to us, we were having this baby and loving this baby regardless. Don't lose the joy of this pregnancy by replacing it with fear. clubfoot is treatable, start doing research on that. Find a good doctor, either one on the doctor approved list or Dr. Ponseti himself. There are a lot of dr.'s who say they use the ponseti method but have tweaked it somehow and can do more damage than good. Alot of us here have gone through that, learn from our mistakes. Use this board to get the most answers. We would love to help you go through this time. And you WILL get through it. Lord bless you as you make your decisions and start your research! Have fun!! Don't forget, we are here for you. severe atypical bilateral clubfoot 10-09-03 , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hello Nandini, Congratulations on your pregnancy! Twins Wow how exciting! Do not worry, everything is going to be fine. Clubfoot is a totally fixable condition! Definately do your research, you will find that there is a non-surgical treatment - Ponseti - that is effective in 95% of all cases! You have come to a great place for information and support, you are not alone, we will all be here for you! & Grace 07-21-04 Unilateral (one foot affected) Right Club Foot > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hello Nandini, Congratulations on your pregnancy! Twins Wow how exciting! Do not worry, everything is going to be fine. Clubfoot is a totally fixable condition! Definately do your research, you will find that there is a non-surgical treatment - Ponseti - that is effective in 95% of all cases! You have come to a great place for information and support, you are not alone, we will all be here for you! & Grace 07-21-04 Unilateral (one foot affected) Right Club Foot > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 a, I totally agree. I believe that God always gives us more than we can handle when we are trying to handle it WITHOUT Him. WITH Him, we can handle anything. But without Him? Nothing. He gives us more so we realize how much we need Him and lets us know He is there and wants to help if we just hand it to him. If we stop and realize that through this trial He's actually carrying us, we would stop struggling so much to fix it on our own. The phrase is usually misquoted. God nevers gives us more TEMPTATION than we can handle...but problems and trials? You betcha, because He wants to take care of it for us. We are going to get through this by the grace of God and then look back and think Whooo-hooo what a ride!! How wonderful when others are taking the ride with you! atypical bl cf 10-09-03 , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Keep your chin up a. It can only go up from here. Thank goodness for our moms. I know I depend on mine alot..... dm a Holland pandlholland@...> wrote: , i totally agree with God not giving us more than we can handle but i heard something that pretty much fits where i have been, am now, and where i am going. God gives us a little more than we can handle because when he does it brings us closer to him. i know there are others that are worse off than me but having to borrow money for enough gas to make it home and to work again has never been in my thoughts. My parents have been wonderful but can only do so much themselves. i am so ready to quite my job, stay home with Logan (not have to pay for daycare) and maybe qualify for Medicade. I would even be willing to sell my truck. And to add to the pile. DH left yesterday to work out of state. Logan started vomiting and vomiting. well needless to say we were in the Emergency Room until 11:30 last night they put an IV in with a drip, drew blood and did a urine test. My poor little guy. He is either going to grow up to hate doctors or be one. went home to find everyone one our road had no power, wasnt gonna freeze my you know what off so off we went to moms house. doing fine know. thanks for listening. sorry i was blabding. a, mom to , , Logan (07/12/04, bicf, serial casting) Gerace cgerace@...> wrote: Nandini, Congratulations! You better start stocking up on diapers now.lol. I believe we found out about my son's clubfoot at our 16 week ultrasound because I recall having the amnio done at 18 weeks. We also had the genetic counseling (which I found useless) because they wouldn't do the amnio if we didn't go to the counseling...go figure! If I knew then what I know now I think I would be more worried about handling twins!! :-) LOLOL God only gives you what he knows you can handle. good luck! Mommy to (12-17-98) and Christian (1-30-04) LCF - DBB 23/7 Re: Re: sores w/ DBB // allison > > > We too are in healing casts. The first time in the shoes within two > days Aidan had a blister on the inside of one foot and a blister on the > back of the other. This Friday 12/17 we are going to try the shoes > again. I'm dreading it and I wish their were another way. Does he > actually have a couple of kids wearing these new shoes now? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Moms are awesome!! Mine is a teacher so she had this summer off. She came with me to Iowa for over 8 weeks to stay and help with the kids while saw dr. Ponseti. She chose to take 3 weeks off of the beginning of school year to stay and help. Now that we are back in casts again, grrr, she is driving with me to Iowa from Michigan (7 1/2 hour trip good weather) each week for castings. What would we do without those moms that are so selfless? I sure hope my boys think of me that way someday! I am so glad you have your mom to help you. God is so good to provide us with the help we need to get through anything. atyp bl cf 10-09-03 , > > > > I'm so sorry to hear about your problems with sores after using the > > Markell shoes. I received an email reply from Dr Ponseti > yesterday, he > > mentioned that he uses the shoes almost exclusively now > > 'because they are more comfortable' and the babies don't get any > sores. > > > > > > I'm holding thumbs that gets funding, or whatever he > needs > > to start making his brace in larger volumes so they can be > exported and > > supplied to more people outside those treated in Iowa. > > > > It doesn't affect us because is almost 2 and tolerates his > Markells > > well, but if I'd had the choice back then (April 2003) I'd have > gone for > > the 's! > > > > We are very happy that Dr Ponseti has just put onto night > time only > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > because still walks like he's over-corrected (a little > > duck-footed). We emailed a short video of walking and > climbing for > > Dr Ponseti to see (we live in South Africa). > > > > It feels like we've reached another milestone in this journey. I > guess > > that in the 'old' days they'd have taken him out of shoes around > now > > because of this, but Dr Ponseti revised it after they had some > relapses > > from too early release. He says must wear them at this > reduced > > angle and for shorter hours until he's 3 to avoid any chance of > relapse. > > > > > > I can understand your concern about the shoes, if you still have > > problems, maybe you should discuss your concerns with your doctor > and > > see if you can order the s instead. It seems like they are > > tried and proven to work already. > > > > and > > 24 Jan 2003, bilateral cf > > Treated by Dr Ponseti April 2003 > > > > www.clubfoot.co.za > > > > > > Re: Re: sores w/ DBB // allison > > > > > > We too are in healing casts. The first time in the shoes within > two > > days Aidan had a blister on the inside of one foot and a blister > on the > > back of the other. This Friday 12/17 we are going to try the shoes > > again. I'm dreading it and I wish their were another way. Does he > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 Isn't that where the sole of the feet has a crease in it? I don't know my terms very well. We've had just about everything, but dr. ponseti, love him dearly, but I have a hard time understanding him. hehe. Post it, i bet other moms know for sure what the terms are and what they mean. we go again on sunday so keep us in your prayers for good weather. some of the moms are driving 12 hours and 15 hours to see dr. ponseti. He is so worth it!! alicia , > > > > > > I'm so sorry to hear about your problems with sores after using the > > > Markell shoes. I received an email reply from Dr Ponseti > > yesterday, he > > > mentioned that he uses the shoes almost exclusively now > > > 'because they are more comfortable' and the babies don't get any > > sores. > > > > > > > > > I'm holding thumbs that gets funding, or whatever he > > needs > > > to start making his brace in larger volumes so they can be > > exported and > > > supplied to more people outside those treated in Iowa. > > > > > > It doesn't affect us because is almost 2 and tolerates his > > Markells > > > well, but if I'd had the choice back then (April 2003) I'd have > > gone for > > > the 's! > > > > > > We are very happy that Dr Ponseti has just put onto night > > time only > > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > > because still walks like he's over-corrected (a little > > > duck-footed). We emailed a short video of walking and > > climbing for > > > Dr Ponseti to see (we live in South Africa). > > > > > > It feels like we've reached another milestone in this journey. I > > guess > > > that in the 'old' days they'd have taken him out of shoes around > > now > > > because of this, but Dr Ponseti revised it after they had some > > relapses > > > from too early release. He says must wear them at this > > reduced > > > angle and for shorter hours until he's 3 to avoid any chance of > > relapse. > > > > > > > > > I can understand your concern about the shoes, if you still have > > > problems, maybe you should discuss your concerns with your doctor > > and > > > see if you can order the s instead. It seems like they are > > > tried and proven to work already. > > > > > > and > > > 24 Jan 2003, bilateral cf > > > Treated by Dr Ponseti April 2003 > > > > > > www.clubfoot.co.za > > > > > > > > > Re: Re: sores w/ DBB // allison > > > > > > > > > We too are in healing casts. The first time in the shoes within > > two > > > days Aidan had a blister on the inside of one foot and a blister > > on the > > > back of the other. This Friday 12/17 we are going to try the shoes > > > again. I'm dreading it and I wish their were another way. Does he > > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2004 Report Share Posted December 16, 2004 First off, I would see if there are any dr.'s ponseti certified in the area or surrounding area. If not, send pictures to dr. p. get some with his feet flat on ground, weight bearing. side shots, top shots, bottom shots and then instep shots. Dr. P will be able to help you with pictures. Is your dr. willing to converse with dr. p about Logans feet? We went through the problems of dr.s that said they used ponseti method and didn't. My son had a surgery he shouldn't have and we are still doing damage control from that. Dr. ponseti has a lot of experience and a lot of practice...drive as far as you have to if you can. do what you have to do to ensure logan gets the best. I sure hope this helps! , > > > > > > > > I'm so sorry to hear about your problems with sores after using the > > > > Markell shoes. I received an email reply from Dr Ponseti > > > yesterday, he > > > > mentioned that he uses the shoes almost exclusively now > > > > 'because they are more comfortable' and the babies don't get any > > > sores. > > > > > > > > > > > > I'm holding thumbs that gets funding, or whatever he > > > needs > > > > to start making his brace in larger volumes so they can be > > > exported and > > > > supplied to more people outside those treated in Iowa. > > > > > > > > It doesn't affect us because is almost 2 and tolerates his > > > Markells > > > > well, but if I'd had the choice back then (April 2003) I'd have > > > gone for > > > > the 's! > > > > > > > > We are very happy that Dr Ponseti has just put onto night > > > time only > > > > wear (10-12 hours), with a reduced rotation angle of 50 degrees - > > > > because still walks like he's over-corrected (a little > > > > duck-footed). We emailed a short video of walking and > > > climbing for > > > > Dr Ponseti to see (we live in South Africa). > > > > > > > > It feels like we've reached another milestone in this journey. I > > > guess > > > > that in the 'old' days they'd have taken him out of shoes around > > > now > > > > because of this, but Dr Ponseti revised it after they had some > > > relapses > > > > from too early release. He says must wear them at this > > > reduced > > > > angle and for shorter hours until he's 3 to avoid any chance of > > > relapse. > > > > > > > > > > > > I can understand your concern about the shoes, if you still have > > > > problems, maybe you should discuss your concerns with your doctor > > > and > > > > see if you can order the s instead. It seems like they are > > > > tried and proven to work already. > > > > > > > > and > > > > 24 Jan 2003, bilateral cf > > > > Treated by Dr Ponseti April 2003 > > > > > > > > www.clubfoot.co.za > > > > > > > > > > > > Re: Re: sores w/ DBB // allison > > > > > > > > > > > > We too are in healing casts. The first time in the shoes within > > > two > > > > days Aidan had a blister on the inside of one foot and a blister > > > on the > > > > back of the other. This Friday 12/17 we are going to try the shoes > > > > again. I'm dreading it and I wish their were another way. Does he > > > > actually have a couple of kids wearing these new shoes now? > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 > You are difinitely in a difficult sittuation. I was frantic when I knew in my heart that Iowa was the only logical place to take Kai. We had to borrow money from my dad because Angel Flights would not go as far as we needed (Seattle to Iowa) and had to rely heavily on family to help with the other kids, but we did it. > > Honestly, if you are dealing with unusual cavus, there are only a handful of doctors that are suggested. There may be one closer to you than Iowa. (searching for Dr P's e-mail that has the info .... ) > > Okay, here is the confirmed US list: > > Dr Ponseti, Iowa City, Iowa > Dr Mosca, Seattle, Washington > Dr Colburn, California (dont remember the city) > Dr Herzenberg, (help here, I dont remember!) > Dr Dobbs (again, dont remember!) I'll add Dr. Mack at Shriner's in Springfield, MA to this list. He's treated my son's feet and they were treated unsuccessfully by a non- Ponseti doctor. Dr. Ponseti recommended him to us. and 11/10/03 bilateral clubfeet dbb 23/7 Quote Link to comment Share on other sites More sharing options...
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