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Clubfoot Discussion Community

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Hello [Oct. 10th, 2004|03:13 pm]
Clubfoot Discussion Community

clubfeet

[ana_blue]
Hi, I just came across the group today, thought I would join. I belong to a couple of email groups, but I don't feel I get the support there that I need. They are wonderful people, but sometimes I just need to vent and not be judged.

Anyway, let me introduce myself. I am the mother of a 3 month old BEAUTIFUL baby boy named Brendan. He was born with a slight case of CF in his left foot. He is being treated with the Ponseti method. He was doing wonderfully with all the casts and what not, but now that we have reached the DBB stage...we seem to have hit a wall. Sometimes I just don't know how to deal with it. I know it is best for him, but it seems to be changing him. He was the happiest baby, laughing and smiling..very loving. Ever since we started trying the DBB (a week and a half ago) he has taken to sleeping like ALL day. He cries like he is being murdered half the time, he rarely smiles. He wakes up screaming like a banshee...even when we don't have the bar on. We are supposed to have it on 23 hours out of the day, but we just haven't been able to. He manages to take his foot out somehow, no matter how tight I make the shoe. I know this is currently the best method of treatment for him..but I just wish there was SOMETHING better...easier. It tears my heart apart to see my wonderful boy go through so much. While I am so thankful that of all things that could have happened to him, it is just this, this correctable thing...I still wonder why. I still wish I could wave a wand and make him all better.

Everyone calls me "a rock". I am supposed to always be the strong one. I don't feel so strong with this. Part of me just wants to give up and say forget the bar! It takes a lot of will power to not cave.

Anyway, this is who I am. I look forward to getting to know all of you.
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Comments:
[User Picture]From: katie8471
2004-10-11 01:29 am (UTC)
I can imagine how frustrating that is. did you try the yahoo group "nosurgery4clubfoot"? I have found them very supportive. they are encouraging because THEY had babies that cried and screamed and just plain didnt like the DBB. Our little guy is 2(just home from russia) and we are still at the point where doctors are deciding what the problem is but we thought it was club foot in the beginning. I am sorry things are so rough. hang in there. from what I hear it gets better with time.
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[User Picture]From: ana_blue
2004-10-11 11:59 am (UTC)
I just joined that one. I was on just the clubfoot yahoo group before that. I got lambasted alot. Even in private emails. nosurgery is infinitely more supportive! BTW...I think your little guy is adorable :)I hope they find out what is causing his problems soon.
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[User Picture]From: prettyh
2004-10-11 07:34 am (UTC)
Ahhh... Being a now-grownup who had the dreaded bar between her shoes for several years, I can completely relate to both what you must be going through and what your little guy is feeling. I too used to sneak one foot out in the middle of the night, and my parents didn't have the heart to strap me back in. Granted, I had surgery as well, so I can't say how much impact the bar itself had, but I do remember well what it was like, and I can honestly say that as painful as it was at the time, I don't regret my parents' or my doctors' decision to use it.

You won't find anyone judgemental here. Welcome. :)
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[User Picture]From: ana_blue
2004-10-11 11:57 am (UTC)
You do not know how much better that makes me feel. I have tears in my eyes. *hugs you* I always worry if he thinks we are hurting him on purpose....thank you. Hopefully someday I will hear him say those same words.
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[User Picture]From: prettyh
2004-10-11 10:22 pm (UTC)
I'm glad that helped. I'm in sort of a unique position sometimes, being able to talk about my own experiences as a child, and now working in the healthcare field where I get to watch babies' progress with their own feet, so I'm happy to share any information that might be useful to you!

Even though I didn't fully understand why my parents were making me wear the shoes/splints/casts etc., I could tell that they hated doing it, so I never resented them. I actually called my mom and told her about your post, to get a mother's perspective, and she said she could completely relate to how you must be feeling & said to tell you to "try to stay strong; it's worth it in the end." *hugs!*
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[User Picture]From: ana_blue
2004-10-12 11:59 am (UTC)
now i'm teary eyed and want to hug you AND your mom! :)
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From: (Anonymous)
2009-06-12 07:19 pm (UTC)

club feet

Hi

My baby has club feet.. H e is nine months old now.. We got his surgery done when he was 7months old. Got dbb shoes for him which just didnot fit him he was takin his foot out after evry 5 mins.. I also cudnot made him wear 23hours then i got to know bout afo braces they r really good my son is wearin it now.. I m hopin to get good results now.
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From: (Anonymous)
2011-03-12 01:38 pm (UTC)

Clubfoot

Hiya, my name's Christina. I was born with a clubfoot and was in an incubator for the first couple of months of my life due to prematurity of three months. For some reason my clubfoot wasn't really picked up by anyone, maybe because that was the least of their concerns at that stage. I always had my shoes specially made as a child and walked with quite a bit of pain.

What I would say my mum did more than anything I remember was to massage my foot with a small amount of olive oil and do her best to just knead it into the right position and reduce the pain. This really helped in our bonding and made me feel a lot better about it especially as it created a time when I could speak to her about any teasing I experienced. Obviously your little boy Brendan is not old enough to speak to you yet but I would recommend just holding or rubbing his feet when the bar is not on because the warmth of your hands should help with any pain and stress.

Try to get whoever is dealing with your case to show you how to do gentle physiotherapy with him. I don't know anything about the treatments they have for it myself as I never went through any of them, so I can't advise you on that. My feet are still two sizes different and I have occasional pain and slight limping when I walk for prolongued periods but at twenty four years old I've run, swum, climbed, cycled and played many different sports though admittedly with a little more difficulty than everyone else. I would say the most important thing is to do the physiotherapy with him as he grows up because it will teach him how to reduce his own pain when he's alone and to position his foot properly, also it will create times of good quality time for both of you. My main issue growing up was that I didn't know anyone else with the same condition which made me feel a little bit freakish about the things I struggled with doing but my mum always held my foot and went through my exercises with me. I would have wished to be able to talk to others with the condition, so if you can arrange that for him I think it may be beneficial.

I don't know if you have any religious beliefs but my mum's a Christian, as I am now, and has always prayed for me other than everything else she did like getting me active and playing and practising doing everything even with my foot the way it was, I believe that God played a big part in my development. I really hope that everything goes well for you and your son and that you find a way that works for you to help him overcome the difficulties.
God bless.
Christina.
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From: (Anonymous)
2011-03-15 03:21 am (UTC)

club foot- 25 years old

I have a clubbed right foot and I am very athletic. I had about 12 casts while I was under 2 years old and my shoe size is and the other is 8 approximately. It makes it hard to buy shoes because one foot is usually in adult size and the other in kids. Sometimes I buy just the larger pair, but for football, personal training, or cop work I make sure the shoes or boots fit. I am very fast, but not fast enough to be in the NFL because I do not have full range of motion to get the speed. My left calf is 2 times larger than my right one because the right one can not pack on nearly as much muscle. I live a normal life and I say this to encourage anyone that has a clubbed foot. Life can be great as it is a gift from God.
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From: eroman5
2013-06-16 10:40 am (UTC)
thanks for sharing. You have the right attitude.
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From: eroman5
2013-06-16 10:39 am (UTC)
Hello. My name is Ed, am 42 years old, married and a father of five. I live and work in Greenville, South Carolina, USA as a school principal. I was born with two clubfeet in Chile and was very fortunate to have the best corrective surgery at the time and place which has allowed me to walk since 2 and currently can work in the yard for hours, run with the dog, play recreational sports with my children and play drums. However, my left is very deformed with a true club at the heel and still have a hard time accepting that my calves are not there, walk with a slight limp, have short legs and don't enjoy the summer months for obvious reasons.(never wear shorts or swim publically) I am still very self-consciuos when I guess I should not be. My oldest child and only son(20 years old) was born with one clubfoot(his right), my daughters are all fine, and even though his surgery here in the states was much better and his foot looks much better, he still has an obvious impediment that has also caused him some grief in his young age. I am interested in local, national and international forums that provide support, hope, understanding and more to people with similar conditions that we may all aspire to positive lives. thanks Werner
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