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Heather Spann likes michelle’s activity 4 weeks ago · View
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Only 2 more weeks to go!!!! We are so excited that Bailey will have her FINAL set of casts off. Boy, I have saved some of her casts but this last set I will forsure be keeping. It’s so funny how dirty these hot pink casts have gotten! But I suppose being that she has had them on for 6 weeks and is crawling all over the place what should I expect. LOL.
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michelle and Heather Spann are now friends 4 weeks ago · View
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Heather Spann became a registered member 4 weeks, 1 day ago · View
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michelle likes Ruth Maude’s activity 1 month ago · View
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Hi Everybody. Boy have I been having some issues with getting Logged in to this club!! But I’m finally here and ready to see what it is all about. Here is my story……………….
My daughter Bailey was born Dec. 16, 2011. She was born with bi-lateral clubbed feet. The first set of casts went on at about 2 weeks old and changed weekely until about 5 months old. She did have her heel cord cut in there somewhere but unfortunalty the poinseti method was not successful for her. Dr. Noonan from AFCH said of the 300+ clubbed feet he has treated in his career that Baileys was the most severe he has ever treated! Severe=stiffness. So the casts came off and when she was 1year and 1 month she had major reconstructive surgery. The surgery could not be completed 100% due to her feet turning blue when put in the corrected position, so after a 5 day stay at the hospital, we went home and prepared to come back in 10 days for the last 10% of the surgery which was fairley simple, just flexing her feet into the exact position now that they have had time to adjust to the initial surgery. She had her post surgery casts on for 8 weeks. With the pins out and her LAST set of casts on (the little ones that go below her knees) we are anticapating May 2 when she will be able to start to learn how to walk. Bailey is now 16 months old and ready to take off!! She will have at set of braces on her legs for day-time and a different set for night-time, and besides some physical thearpy, and one or two heel cord cuts in the future she should be like any other child with all the same abilitys. I can not express to you this baby girls strength and endurance. She is such a perfect example of not letting anything stand in her way from doing what she wants and that smile and cheerful spirit of hers has tought me to be greatful for what I have and not complain. I hope you can all be inspired by Baileys story and I will keep ypu updated with her up-coming appt. to have her final set of casts removed. I am so excited for my baby girl to discover she has little toes and to feel the bottoms of her feet for the first time ever in her almost year and a half of life. Thank youThat’s interesting. My baby’s Doc said that my daughter’s feet are as bad as they get, but your story sounds so much worse than mine. My daughter’s cords were cut at about 3 months of age, and now that she is 4 months old, she just got her first set of splints/braces. I’m hopeful she won’t have to have any more surgery.
The Exercises are no fun at all, but I’m not sure if everyone has the same type of exercises to do. On my daughter, I have to turn her feet out, then force them upwards until the top of her foot touches her shin at least 5 times per day in sets of 3. She screams like we are killing her. I hate it. I absolutely hate it; it’s like torturing her over and over again. And the sad thing is, I can’t tell a difference in her flexibility. She still can’t hardly move her ankles (unless we force it and it hurts) and her toes are still curved in. But I’m sure the exercises are at least keeping it from getting worse, so we do it regardless of how much we hate it. Hopefully your daughter will feel less pain and have more flexibility as a result.
Wow. I’m so sorry to hear that your daughter is not liking the stretches and is in so much pain! I can understand how hard this can be on everybody. My daughter did have her achillies tendons cut at around maybe 3 to 4 months old. But after the next few set of casts and no more give the doc was thinking maybe we should stop. The major decision maker was when that last set of casts went on and a couple of days later they started to slip (and I new she was already getting a sore) we had to take her to the hospital to have her casts taken off instead of her regular ortho clinic cause they were closed and the doc accidently cut her ankle while sawing off the casts. Very traumatic for both of us! Needless to say when we went to see her ortho doc that next wed to determine wether he will continue with the casts or do the surgery when she is a year the casting was done. My daughter was then, and is now very traumatized when even approching an elevator (her ortho is on the 2nd floor) and by doctors and nurses. She also has seperation anxiety even if someone even looks at her. It’s getting better though. Sounds like your on the right path with your baby and keep up with the good work, just remember that even if she doesn’t understand right now that you are doing what is best for her and she wont remember much of this when she is older!
My Doc never sawed off my daughters’ casts, and for that I’m glad. I think *I* would have been traumatized if I’d seen that saw on my daughters’ legs LOL. My Doc had us soak her in vinegar the night before and peel the casts off ourselves. It took maybe 45 minutes each time, but it gave us a chance to give her a good bath before the next set of casts was put back on.
Her Daddy and I take turns stretching her feet. We don’t want her to associate either one of us with pain. We also make sure we softly stroke her feet and legs, and give them kisses all the time, so she doesn’t always think it will hurt when we touch her feet. We touch her softly way more often than we stretch her, but she still looks very concerned every time something touches her feet.
Heather,
We took Evan’s casts off the night before. We didn’t know about the ponseti method, he just had below the knee casts so he didn’t get a good result. My understanding is that with the Ponseti method they don’t take casts off the night before.
~ Ruth
Our Doc told us that he prefers us to take them off the night before for 2 reasons; 1) it’s gentler on her skin than the saw, and 2) so we have a chance to give her a good soaking bath once per week. My daughters’ casts were above the knee.
Regardless, we are stuck with this Doc. He’s the only Pediatric Orthopedic doctor within driving distance. As it is, it’s a 45 minute drive to his office.
Ruth and Heather, Wow It’s so amazing to hear that our Doc.’s are doing things so differently!! When I found out my daughter was going to have clubbed feet I did so much research and before I even went into the Ortho Doc. I found out through my research and word of mouth that the ponseti method was the prefered way of fixing clubbed feet. I guess I didnt even think there were other ways that Doc’s were doing it. Unfortunally that method didn’t work for her! I never even questioned her Doc. cause I read so much about the ponseti method. I wonder now if I should have gotten a second opinion.
The casts weren’t working very well on my daughter either. They did seem better after the surgery, but her toes still try to curl under her feet, and she still has only a tiny bit of mobility. The Doc went from saying that there was no doubt she would be able to ”run and play and participate in athletics” at her first consultation, to saying that she ”should be able to run and play”. ”Should” doesn’t sound nearly so optimistic.
I’ve had a couple parents on another forum recommend that I get a second opinion, but I really don’t think that is necessary. Her Doc has a LOT of experience with club feet, seeing as he is the only Orthopedic pediatric surgeon in at least 100 miles, and he has a huge wall of photo’s from past successfully treated patients. The exercises he has us doing on our daughter seem kind of extreme, but he told us when we started that every patient was different. If this is what he believes she needs, I trust he knows way more about it than I do.
I didn’t know that my daughter had club feet until she was born. It was so funny ( in a not funny way)……when she was born, everyone was so quiet. I asked if she was Okay, and her daddy said, ”Oh yeah, she’s fine except for the…..Never Mind.” He scared the crap out of me! Then the nurse said, ”It’s Okay, her feet are just a little crooked is all.” I was thinking maybe she was a bit bowlegged, which isn’t uncommon.
But then when they gave her to me, and I saw that her feet were nearly upside-down and her toes were twisted underneath her feet, I was right back to that panicky feeling. I didn’t even know what club-foot was before she was born.
Our storys are so similar in a lot of ways. I had heard of club feet but didnt really know much about it. My daughter also has a mild case of arthrogryposis (I might have spelled that wrong). She was so stiff when she was born she could barely open her mouth! I do like her Ortho Doc. but he is a little ummm how do I say this nicely….Not super anti-social but he doesn’t remember that this isn’t everyday routine for some parents like it is for him. I need some explanations on MY daughters specific needs and what he thinks her prognosis is. He told me that she will be stiff in the knees and ankels but she will walk. She will probably need physical th. for a long time and a couple more heal cord cuts. Overall I just have to have faith that he is doing everything he knows. He was trained by Doc.Ponseti himself. I just pray that my daughter will be able to do everything she wants to and not suffer any pain from her feet. I joke around to my family and friends that when she is finally done with this ordeal and is walking, running etc. that I will get her feet gold plated!! Her very last surgery was close to $100,000. And that was just her last surgery. She has been to SO many diff. docs. it’s crazy. I would say so far since they dicovered she had club feet in utero (and all of the 3/4D ultrasounds, amniocentesis, genetics, etc)until now she has accumulated easily $300,000. LOL and were not even done yet. Thank God we have ins. but we do have deductables and copays.But besides all that I still feel blessed! She is an amazeing little girl and so strong. I tell my 11 and 3 yr old to watch out for when she grows up, she’s going to be tough. I enjoy our conversations! It’s nice to know that I’m not alone and that other people have had similar stories! thanx
Oh Geez! I hope your co-pays are small. My daughter was turned down for her father’s insurance. He’s on her birth certificate as her father, he signed a paternity affidavit, and we even spent $500 on a paternity test, but they still say he hasn’t established her as his dependent. Arseholes. After getting thousands of dollars in medical bills, I caved and signed her up for Medicaid. So far they’ve covered 100%, so we are lucky in that regard.
Since clubfoot is so rare, and more rare for girls, and even more rare to have it in both feet, we tell people we are gonna have her play the lottery when she is old enough LOL.
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Maria Kosberg posted an update: 3 months, 3 weeks ago · View
Hi,
Just wondering if there is a group that meet or anyone living in the northern suburbs of Melbourne. It would be nice to meet up with other parents who have a child with clubfoot.
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Maria Kosberg joined the group The Ilizarov technique 3 months, 3 weeks ago · View
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Maria Kosberg joined the group The Ponseti Method 3 months, 3 weeks ago · View
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Maria Kosberg joined the group Adults & Teens with Clubfeet 3 months, 3 weeks ago · View
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Wajid Mahmood posted an update: 4 months, 1 week ago · View
Hi everyone, just joined in. Need to know the community and accordingly will share my daughter club foot on going treatment.
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Dwana Alayne Evans became a registered member 4 months, 1 week ago · View
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Wajid Mahmood became a registered member 4 months, 1 week ago · View
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Maria Kosberg became a registered member 5 months, 2 weeks ago · View
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