I hate clubfeet

[Tinkerella]

I know this group isn't that active but I am really struggling and hoping that someone else might understand what I'm going through.

My son was born with clubfeet, they were corrected with the Ponsetti method although it was a struggle to get the doctor to stick to it completely. Then on his last appointment he had a new doctor that wasn't really into the Ponsetti treatment and said 'oh your son is 3 now, his feet look great... no new prescription for the FAB corrective shoes'. I was very upset but couldn't get him into a new doctor right away because we moved and had a change in insurance groups etc... so now I see his left foot is starting to curl in and yesterday he told me his foot was hurting when we were out walking the dog. I'm so upset.

Add to this that I was born with two clubfeet 42 years ago, had all the experimental surgeries (13 so far) and treatments and my foot is a total mess. Very painful, swells, I take meds that don't help, it causes my back to go out and spasm (scoliosis) when I'm walking around limping. I have two small children (3 and 5), I'm a single mom and I'm just sad and depressed about all of this. I wonder how long my foot will even hold out and if I'll be able to care for my kids much less myself for the next 40 years.

So, anyway, I'm sure no one really reads these posts and if they do they won't know what to say but I just want to put my feeling in writing and hope they'll not be quite so painful for me emotionally.

[Winter711]

I'm sorry this is such s trying time for you.  I can understand how frustrating it would be to see a relapse at this point.  My son has an appointment next month and will be 2.5 and he may be taken out of his brace because of his knee and I am very worried about a relapse.  I can not imagine what you have been through as far as your own feet.  You have every right to feel the way you do.  And if you need to vent then vent away.  The good news for your son is that even though it sucks your son can still be treated without surgery.  Are you in California?

[Tinkerella]

Thank you so much, some times it's just nice to get it out and feel like it's ok and you have reason to feel so crappy! I Usually I don't let it bother me but the drama of it seems like it's just been building.

We are in Southern California. I am hoping to get Kevin in to see Dr. Weinhert (sp?) and really want him to get the best care possible. I was a Shriners patient so they did a lot of experiements on mine trying to figure out how to make my foot straight. The sad thing is that Ponsetti published his work before I was born but the doctors were not listening to him and didn't do it right.  Sometimes I consider amputation.

A message to all moms of children with club feet... avoid surgery at all costs! I can tell you that it will bring years of pain for the rest of their life.

 

[OCTOBERMOMMY21]

i understand totally i hate it sometimes because everytime i go into the doctors he says angels great when he said she can only wear her brace at night i told my husbands family his grandma was like well what bout her toes, then her shins going in and the doc said she will grow out of it and his grandma said she needs a full leg brace he dont know what hes talking bout it just seems everything me and the doctors are doing isnt good enough when his family seen her with the brace for the first time they yelled at me and told me to take it off i said over my dead body it just drives me crazy i know her feet wont ever be perfect thats not my goal my goal is to have it working properly with no pain and noone understands that society is brainwashed to expect perfection thats my vent for tonight whos next??

Quoting Tinkerella:

Thank you so much, some times it's just nice to get it out and feel like it's ok and you have reason to feel so crappy! I Usually I don't let it bother me but the drama of it seems like it's just been building.

We are in Southern California. I am hoping to get Kevin in to see Dr. Weinhert (sp?) and really want him to get the best care possible. I was a Shriners patient so they did a lot of experiements on mine trying to figure out how to make my foot straight. The sad thing is that Ponsetti published his work before I was born but the doctors were not listening to him and didn't do it right.  Sometimes I consider amputation.

A message to all moms of children with club feet... avoid surgery at all costs! I can tell you that it will bring years of pain for the rest of their life.

 

[Tinkerella]

I understand. I'm not looking for perfection just functional and pain free. I guess that's too much to ask!