Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 I posted awhile back about my son Ian. He's 15 months old and was born with unilateral cf. We first sought treatment from a doctor who casted and then put him in a Wheaton brace. He then relapsed from not being in a FAB brace. I was then referred by our pediatrician to a doctor who recasted him in the Ponsetti method (so he said) and now has him in the DBB. He was 13.5 months old at that time. I'm a bit concerned at this point. He told us that Ian only has to wear his brace for nap and night time. Don't you think he should be in it more? Also Ian is still walking on the outside of his foot and the doctor prescribed physical therapy to increase his range of motion and strengthen his foot. Also his foot isn't completely straight. It starts to curve inwards a bit down by his toes. Do you think I should get another opinion. I've talked to some parents who go to this same doctor and they rave about him but I'm not to sure. I don't live that far from Missouri. Maybe I should go see Dr. Dobbs just for the peace of mind. What would you do? Thanks, Anne Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 anne... from what i am understanding, and i may be wrong, but the curving of the toes inward and the walking on the outside of his foot is a sign of a relapse.. although in your case i am not sure his foot was ever fully corrected... i would absolutely seek another opinion... and it's not too late... and dr dobb's is wonderful.. and if you live close then i would go to him in a heart beat.. what can it hurt... he could say all looks great but if he thinks there is relapse then it's best to treat it now before it is too late... hth mommy to Grace 12-03-03 BCF Dobb's Brace 16/7 doulagal2002 bingham6@...> wrote: I posted awhile back about my son Ian. He's 15 months old and was born with unilateral cf. We first sought treatment from a doctor who casted and then put him in a Wheaton brace. He then relapsed from not being in a FAB brace. I was then referred by our pediatrician to a doctor who recasted him in the Ponsetti method (so he said) and now has him in the DBB. He was 13.5 months old at that time. I'm a bit concerned at this point. He told us that Ian only has to wear his brace for nap and night time. Don't you think he should be in it more? Also Ian is still walking on the outside of his foot and the doctor prescribed physical therapy to increase his range of motion and strengthen his foot. Also his foot isn't completely straight. It starts to curve inwards a bit down by his toes. Do you think I should get another opinion. I've talked to some parents who go to this same doctor and they rave about him but I'm not to sure. I don't live that far from Missouri. Maybe I should go see Dr. Dobbs just for the peace of mind. What would you do? Thanks, Anne Ian 12/2/03 left unilateral CF FAB nights and naps love, lisa before i made you in the womb, i knew you... love God. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Anne, I agree with and from experience I can say that it most likely wasn't fully corrected and is relapsing as well. If it were me, and of course it was so this is what I did, I'd be sending Dr. P some pictures and then following up with a phone call to him or Joyce pronto. We went after our local guy did what he could and I'll never regret it. Our daughter had relapsed and has even done so again on Dr. P. LOL I'm glad she's in his hands. You will be as well. Chris Re: WWYD question? anne... from what i am understanding, and i may be wrong, but the curving of the toes inward and the walking on the outside of his foot is a sign of a relapse.. although in your case i am not sure his foot was ever fully corrected... i would absolutely seek another opinion... and it's not too late... and dr dobb's is wonderful.. and if you live close then i would go to him in a heart beat.. what can it hurt... he could say all looks great but if he thinks there is relapse then it's best to treat it now before it is too late... hth mommy to Grace 12-03-03 BCF Dobb's Brace 16/7 doulagal2002 bingham6@...> wrote: I posted awhile back about my son Ian. He's 15 months old and was born with unilateral cf. We first sought treatment from a doctor who casted and then put him in a Wheaton brace. He then relapsed from not being in a FAB brace. I was then referred by our pediatrician to a doctor who recasted him in the Ponsetti method (so he said) and now has him in the DBB. He was 13.5 months old at that time. I'm a bit concerned at this point. He told us that Ian only has to wear his brace for nap and night time. Don't you think he should be in it more? Also Ian is still walking on the outside of his foot and the doctor prescribed physical therapy to increase his range of motion and strengthen his foot. Also his foot isn't completely straight. It starts to curve inwards a bit down by his toes. Do you think I should get another opinion. I've talked to some parents who go to this same doctor and they rave about him but I'm not to sure. I don't live that far from Missouri. Maybe I should go see Dr. Dobbs just for the peace of mind. What would you do? Thanks, Anne Ian 12/2/03 left unilateral CF FAB nights and naps love, lisa before i made you in the womb, i knew you... love God. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Anne- The curving in of the toes doesn't necessarily mean relapse usually relapse is the walking on the outside of the feet or walking with heal up (tip toes). Sometimes curved inward toes mean relapse but more often not. Since Ian is walking on the outside of the foot I would definately get another opinion. > > I posted awhile back about my son Ian. He's 15 months old and was > born with unilateral cf. We first sought treatment from a doctor > who casted and then put him in a Wheaton brace. He then relapsed > from not being in a FAB brace. I was then referred by our > pediatrician to a doctor who recasted him in the Ponsetti method (so > he said) and now has him in the DBB. He was 13.5 months old at that > time. I'm a bit concerned at this point. He told us that Ian only > has to wear his brace for nap and night time. Don't you think he > should be in it more? Also Ian is still walking on the outside of > his foot and the doctor prescribed physical therapy to increase his > range of motion and strengthen his foot. Also his foot isn't > completely straight. It starts to curve inwards a bit down by his > toes. Do you think I should get another opinion. I've talked to > some parents who go to this same doctor and they rave about him but > I'm not to sure. I don't live that far from Missouri. Maybe I > should go see Dr. Dobbs just for the peace of mind. What would you > do? > > Thanks, > Anne > Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 It sounds like your " mommy instinct " is telling you something isn't quite right. My best advice would be to trust it! It never hurts to get a second opinion - and if you live close enough to Dr. Dobbs, by all means go for it! And don't wait, either - the older your son gets I think the tougher he will be to treat. Plus the peace of mind you will get from knowing you have looked at all possibilities for his treatment is priceless. Good luck! Darby Livi 3/15/04 bi cf > > I posted awhile back about my son Ian. He's 15 months old and was > born with unilateral cf. We first sought treatment from a doctor > who casted and then put him in a Wheaton brace. He then relapsed > from not being in a FAB brace. I was then referred by our > pediatrician to a doctor who recasted him in the Ponsetti method (so > he said) and now has him in the DBB. He was 13.5 months old at that > time. I'm a bit concerned at this point. He told us that Ian only > has to wear his brace for nap and night time. Don't you think he > should be in it more? Also Ian is still walking on the outside of > his foot and the doctor prescribed physical therapy to increase his > range of motion and strengthen his foot. Also his foot isn't > completely straight. It starts to curve inwards a bit down by his > toes. Do you think I should get another opinion. I've talked to > some parents who go to this same doctor and they rave about him but > I'm not to sure. I don't live that far from Missouri. Maybe I > should go see Dr. Dobbs just for the peace of mind. What would you > do? > > Thanks, > Anne > Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Anne, I would go see Dr. Dobbs because you are better off safe than sorry. Other parents who rave about your current doctor may have very different experience, I mean that perhaps their children's feet were not as severe, or because they were treated early it's OK where your child started at a later date... And then again, your child's feet may be perfectly OK but typically physical therapy is not necessary for a good corrected club foot and at 15 months old you still stand an excellent chance of getting proper correction if you do not have it already. I would go get the 2nd opinion pronto. Listen to your instinct. ee, mother of two bcf boys: - NON Ponseti Method Club Foot Disaster Everett - Dr. Ponseti Success Story Re: WWYD question? It sounds like your " mommy instinct " is telling you something isn't quite right. My best advice would be to trust it! It never hurts to get a second opinion - and if you live close enough to Dr. Dobbs, by all means go for it! And don't wait, either - the older your son gets I think the tougher he will be to treat. Plus the peace of mind you will get from knowing you have looked at all possibilities for his treatment is priceless. Good luck! Darby Livi 3/15/04 bi cf > > I posted awhile back about my son Ian. He's 15 months old and was > born with unilateral cf. We first sought treatment from a doctor > who casted and then put him in a Wheaton brace. He then relapsed > from not being in a FAB brace. I was then referred by our > pediatrician to a doctor who recasted him in the Ponsetti method (so > he said) and now has him in the DBB. He was 13.5 months old at that > time. I'm a bit concerned at this point. He told us that Ian only > has to wear his brace for nap and night time. Don't you think he > should be in it more? Also Ian is still walking on the outside of > his foot and the doctor prescribed physical therapy to increase his > range of motion and strengthen his foot. Also his foot isn't > completely straight. It starts to curve inwards a bit down by his > toes. Do you think I should get another opinion. I've talked to > some parents who go to this same doctor and they rave about him but > I'm not to sure. I don't live that far from Missouri. Maybe I > should go see Dr. Dobbs just for the peace of mind. What would you > do? > > Thanks, > Anne > Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 I would go see Dr. Dobbs. If you aren't comfortable with your treatment you should at least get a second opinion. Go with your gut instints!!! doulagal2002 bingham6@...> wrote: I posted awhile back about my son Ian. He's 15 months old and was born with unilateral cf. We first sought treatment from a doctor who casted and then put him in a Wheaton brace. He then relapsed from not being in a FAB brace. I was then referred by our pediatrician to a doctor who recasted him in the Ponsetti method (so he said) and now has him in the DBB. He was 13.5 months old at that time. I'm a bit concerned at this point. He told us that Ian only has to wear his brace for nap and night time. Don't you think he should be in it more? Also Ian is still walking on the outside of his foot and the doctor prescribed physical therapy to increase his range of motion and strengthen his foot. Also his foot isn't completely straight. It starts to curve inwards a bit down by his toes. Do you think I should get another opinion. I've talked to some parents who go to this same doctor and they rave about him but I'm not to sure. I don't live that far from Missouri. Maybe I should go see Dr. Dobbs just for the peace of mind. What would you do? Thanks, Anne Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Another reason, if you need one, to see Dr Dobbs is that he has quite a bit of experience treating " older " children. Also, if you see him at the Shriner's hospital, care is provided free of charge. When you say that Ian is walking on the outside of his foot, do you mean that the sole of his foot is not flat on the ground (like yours is, I assume) when he is standing on it? If so, this is a pretty big red flag that something is not right. As far as the hours in the FAB go, did he go straight to nights 'n' naps (hmmmm, a new diapering product?) from the casting period with this second doctor? If so, that is another huge red flag. It doesn't matter how old the baby is, following the corrective casting there needs to be a substantial chunk of the day spent in the FAB for the first few months. Unless Ian is still sleeping 20+ hours a day, he is not getting enough time in the FAB. Yes, the weight-bearing while they are out of the FAB is important in helping the foot to stabilize. And, yes, having to keep a toddler in the FAB most of the day will be frustrating for both of you. But if it needs to be done, you need to do it. I know of a number of parents in the group who have done it and who are doing it right now. A second opinion with an experienced doctor would surely be worth it--if only for the peace of mind. Please let us know if there is more we can do to help you process all of this. We truly wish you and Ian all the best. Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) doulagal2002 bingham6@...> wrote: I posted awhile back about my son Ian. He's 15 months old and was born with unilateral cf. We first sought treatment from a doctor who casted and then put him in a Wheaton brace. He then relapsed from not being in a FAB brace. I was then referred by our pediatrician to a doctor who recasted him in the Ponsetti method (so he said) and now has him in the DBB. He was 13.5 months old at that time. I'm a bit concerned at this point. He told us that Ian only has to wear his brace for nap and night time. Don't you think he should be in it more? Also Ian is still walking on the outside of his foot and the doctor prescribed physical therapy to increase his range of motion and strengthen his foot. Also his foot isn't completely straight. It starts to curve inwards a bit down by his toes. Do you think I should get another opinion. I've talked to some parents who go to this same doctor and they rave about him but I'm not to sure. I don't live that far from Missouri. Maybe I should go see Dr. Dobbs just for the peace of mind. What would you do? Thanks, Anne Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 I would get a second opinion. If you can make the trip to Dr. Dobbs, it certainly couldn't hurt and at the very least put your mind at ease. It sounds like the foot isn't fully corrected if it is still turning in. But sometimes it looks like it is turning in when they are out of the brace, but the correction is still good. Does that make any sense? I still get paranoid about this. 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 April 28, 2005 Report Share Posted April 28, 2005 Run as fast as you can to Dr. Dobbs. It sounds like a relapse and can likely be fixed with casting and hopefully in a very short period of time and then on to maintaining it with the correction. Louisa Rachael 6-27-99 Zoe 2-22-04 RCF FAB 12/7 > > I posted awhile back about my son Ian. He's 15 months old and was > born with unilateral cf. We first sought treatment from a doctor > who casted and then put him in a Wheaton brace. He then relapsed > from not being in a FAB brace. I was then referred by our > pediatrician to a doctor who recasted him in the Ponsetti method (so > he said) and now has him in the DBB. He was 13.5 months old at that > time. I'm a bit concerned at this point. He told us that Ian only > has to wear his brace for nap and night time. Don't you think he > should be in it more? Also Ian is still walking on the outside of > his foot and the doctor prescribed physical therapy to increase his > range of motion and strengthen his foot. Also his foot isn't > completely straight. It starts to curve inwards a bit down by his > toes. Do you think I should get another opinion. I've talked to > some parents who go to this same doctor and they rave about him but > I'm not to sure. I don't live that far from Missouri. Maybe I > should go see Dr. Dobbs just for the peace of mind. What would you > do? > > Thanks, > Anne > Ian 12/2/03 left unilateral CF FAB nights and naps Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Thanks everyone for your answers to my WWYD question. Ian is only walking on the outside of his foot. When he's standing he has his foot flat on the ground. He did go straight to nights'n'naps from casting. I questioned the doctor on this because of everything I've read here and he assured me that it would be just fine (considering his age). I always had a bad feeling about it and he does spend more time in his FAB than what was recommended. We're definetly going to get another opinion. My insurance won't cover another consultation for a second opinion so..... how do I make an appointment at Shriner's and isn't there someplace you can stay? Thanks in advance for all your help. I'm so glad we found this group. Anne & Ian > > I posted awhile back about my son Ian. He's 15 months old and was > born with unilateral cf. We first sought treatment from a doctor > who casted and then put him in a Wheaton brace. He then relapsed > from not being in a FAB brace. I was then referred by our > pediatrician to a doctor who recasted him in the Ponsetti method (so > he said) and now has him in the DBB. He was 13.5 months old at that > time. I'm a bit concerned at this point. He told us that Ian only > has to wear his brace for nap and night time. Don't you think he > should be in it more? Also Ian is still walking on the outside of > his foot and the doctor prescribed physical therapy to increase his > range of motion and strengthen his foot. Also his foot isn't > completely straight. It starts to curve inwards a bit down by his > toes. Do you think I should get another opinion. I've talked to > some parents who go to this same doctor and they rave about him but > I'm not to sure. I don't live that far from Missouri. Maybe I > should go see Dr. Dobbs just for the peace of mind. What would you > do? > > Thanks, > Anne > Ian 12/2/03 left unilateral CF FAB nights and naps > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Anne, Here is Dr Dobbs' contact info from Dr Ponseti's list: Dobbs, M.D. Shriners Hospitals for Children St. Louis Unit 2001 S. Lindbergh Blvd. St. Louis, MO 63131-3597 Tel: Fax: email: mattdobbs @ earthlink dot com The Shriner's Hospital in StLouis has a website at: http://www.shrinershq.org/shc/stlouis/index.html When you call the main number, see if they will let you do the application over the phone, that will save you some time. I would also email Dr Dobbs and try to talk to his nurse on the phone to see if they can get you in soon since your son is older. The Care Coordinator will be able to help you with places to stay. And many Shrine Temples will help patients in their area with transportation costs. Most of the people here who see Dr Dobbs see him at Children's Hospital, but hopefully some of his Shriner's patients can pipe up here. You are doing a great job! Naomi The Family Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7) doulagal2002 bingham6@...> wrote: Thanks everyone for your answers to my WWYD question. Ian is only walking on the outside of his foot. When he's standing he has his foot flat on the ground. He did go straight to nights'n'naps from casting. I questioned the doctor on this because of everything I've read here and he assured me that it would be just fine (considering his age). I always had a bad feeling about it and he does spend more time in his FAB than what was recommended. We're definetly going to get another opinion. My insurance won't cover another consultation for a second opinion so..... how do I make an appointment at Shriner's and isn't there someplace you can stay? Thanks in advance for all your help. I'm so glad we found this group. Anne & Ian __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Anne, Dr. Dobbs assistant at Shriners is a, it is best to talk to her directly to get an appointment. Also, they will let you fill out the application over the phone or you can do it online at http://www.shrinershq.org/shc/stlouis/apps.html Oh, and the email I use for him is @earthlink.net (instead of .com), either one may work, I'm not sure. Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16-18/7) > Thanks everyone for your answers to my WWYD question. Ian is only > walking on the outside of his foot. When he's standing he has his > foot flat on the ground. He did go straight to nights'n'naps from > casting. I questioned the doctor on this because of everything I've > read here and he assured me that it would be just fine (considering > his age). I always had a bad feeling about it and he does spend more > time in his FAB than what was recommended. We're definetly going to > get another opinion. My insurance won't cover another consultation > for a second opinion so..... how do I make an appointment at > Shriner's and isn't there someplace you can stay? Thanks in advance > for all your help. I'm so glad we found this group. > > Anne & Ian > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2005 Report Share Posted April 29, 2005 Anne, I was just at Shriner's in St. Louis yesterday. Go on and make the trip for the second opinion. You won't regret it. Dr. Dobbs has also been having great success with his new brace He told me he had something like 56 patients in it with 100% compliance. He is so excited about this. He is very dedicated to the method, his patients, and research concerning clubfoot. The place we usually stay is the Holiday Inn Viking. I think Shriner's rate is $49/night plus taxes. We didn't stay the night yesterday though I had to get back to town for my other child and I have to work today. We usually like to leave home the day of the appointment early (our appt is usually about 1:30 or 2) and then we stay the night that night and drive back home the next day. We like to spend the night that night because he wears his new shoes that night and we check his feet over well the next morning and go back to the shop if we have any bad red marks or blisters starting. Thank goodness his feet looked great this morning since we were already home. We live in KY. Where do you live? There is also a Mc House there but we never have stayed there. I'm sure Shriner's would have information about it. Do call and ask for a Porter she will help get you set up to see Dr. Dobbs. I know he is going to be out of town quite a bit in May so call soon. Good luck Pam and (8-12-01) > > Thanks everyone for your answers to my WWYD question. Ian is only > > walking on the outside of his foot. When he's standing he has his > > foot flat on the ground. He did go straight to nights'n'naps from > > casting. I questioned the doctor on this because of everything I've > > read here and he assured me that it would be just fine (considering > > his age). I always had a bad feeling about it and he does spend more > > time in his FAB than what was recommended. We're definetly going to > > get another opinion. My insurance won't cover another consultation > > for a second opinion so..... how do I make an appointment at > > Shriner's and isn't there someplace you can stay? Thanks in advance > > for all your help. I'm so glad we found this group. > > > > Anne & Ian > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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