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[witchyRina]

My name is Rina. My son is Gabriel, is almost 5 and has clubbed feet. We thought we were done with treatment, but were informed this week that we may be going back into casts.

He didn't have to have surgery when he was born, they just casted him immediatly and after a few months he went in the brace that looks like a snowboard. Being military, our family moves a lot and I know this has caused problems with treatment. Two years ago we were told he was going to be fine and wouldn't need any more treatment. Now we are just hoping to not have to do surgery.

Has any one else had such a rollercoaster? I just want my son to be able to walk and not in pain. He's autistic as well and I don't even know how to explain this to him...he doesn't remember the hurt from before, now he will.

[mrs.hammonds07]

My son is 3.5 and was casted by 2 different doctors from a week old to 4 months old and we figured out they weren't treating him correctly so we came to Iowa at 4 months. We spent 3 weeks here and then went home and 3 weeks later was in the boots and bar. His feet have looked wonderful up until a couple of months back. His left (which was worse at birth) started rolling causing him to walk on the outside of his foot. So in May we came to Iowa for an evaluation and were told he has underbalanced tendons because he had such a severe case of clubfeet at birth and because of that he would need the ATTT. We are now back in Iowa and Logan is in his first pre-ATTT cast. He will get it changed on the 12 and one also applied to his right foot that day and then on the 25th he will be having the ATTT. Casting wasn't bad.. They got him in and casted and out within an hour. No pain at all... Which Logan's never experienced pain when being casted correctly.

I sure wish you luck and hope everything goes smoothly for your LO. Where is he receiving treatment right now??

[witchyRina]

Right now I am waitting for the refferal to go through, we go to the hospital at Bethesda naval base...it's called something different now. We are located near DC.

Gabriel has done casting, the braces with the bar and physical therapy but is now walking on the outsides of his feet. An aunt of mine is going to help us get in touch with Shriner's Hospitals, and I hope it helps. There were mess ups at two of the three military hospitals he has been treated at before and a civilian doctor also seemed to have too high hopes when he told me that every thing was going to be fine.

I am at the point that I will sell every thing I own to get the right treatment. I am so worried and scared.

[StarMommy06]

I am so sorry you and him are having such a rough time! It always breaks my heart seeing the older kids relapse and go back into braces. My dd is 19 months old, when she was born the nurse said "we think she has clubfeet but they should just straighten out." When she was 4 months old she got cats, them her ponseti brace. In fact we are going to see dr. M in iowa city tomorrow to see how she is doing, hopefully she will be out of her braces.

[mrs.hammonds07]

Since we've been through what we have it breaks my heart to hear of kids receiving improper treatment and dr rushing straight to surgeries or trying to rush the braces when the feet clearly aren't fully corrected. I am soooo very glad my mommy intuition kicked in and I began my research and found Dr. Ponseti and Dr. Morcuende. I was like you when I started researching I became sick to my stomach that my little boy had been going through something that wasn't helping but hurting him and at that point I was willing to sell or do what I had to to get to Iowa where I knew I would have no worries because he'd be in the best hands possible. We love it here and the people are wonderful! We stay at the Ronald McDonald House when we come. They have everything here you need, besides your personal stuff of course. They charge a 15.00 a night rate but if you can't afford to pay they do not turn you away. We were here for 3 weeks when Logan was 4 months old and this time we will be here for 4 weeks. If there's anyway you can get to Iowa, I would strongly recommend it. You will never regret it. It was definitely the best decision we ever made in regards to Logan's treatment.

[airbornewife06]

The military should have never treated him we are also military and all they did was at birth put him in a cast then he was transfered to a civilian hospital... The Military has no clue what they are working with don't ever and I mean ever let another military hospital work on his feet cause they can do more harm than good for a child

 

Quoting witchyRina:

Right now I am waitting for the refferal to go through, we go to the hospital at Bethesda naval base...it's called something different now. We are located near DC.

Gabriel has done casting, the braces with the bar and physical therapy but is now walking on the outsides of his feet. An aunt of mine is going to help us get in touch with Shriner's Hospitals, and I hope it helps. There were mess ups at two of the three military hospitals he has been treated at before and a civilian doctor also seemed to have too high hopes when he told me that every thing was going to be fine.

I am at the point that I will sell every thing I own to get the right treatment. I am so worried and scared.

[witchyRina]

Got the information for Shriners and have to call tomorrow. I wish we had a way to Iowa, but I've heard nothing but good about Shriners. Thank you all for caring :)

[mrs.hammonds07]

Which Shriners hosp will you be taking him to? St Louis??

[witchyRina]

don't know yet, gotta wait on every thing to go through

[witchyRina]

We just saw the doctor, trained with ponseti (sp) so I feel I can trust him. Lil man is going back in casts, then brace and then surgery. Not going through Shriners because of the amount of time, husband wouldn't be able to go with us as it is far and would be over night every time. Wish us luck. We will have to get a wheelchair for him to be able to go to school and try to function normally. His autism isn't going to be a help either. Thank you all for your support.

[mrs.hammonds07]

I'm glad you feel comfortable with your dr. Did they say what surgery they would be doing after putting him in the brace? We are 2 days post-op now from the ATTT. It can seem hard at times. Logan and I have been in Iowa since Oct 2 alone, even went through his surgery with only me here. This is the 2nd time I've stayed here with him alone, the first time was when he was 4 months. I really didn't want to at first, but quickly got used to it. Just something I had to do for that peace of mind. Definitely wouldn't change any of it! I hope everything goes smoothly for you guys. We also have to put Logan in a wheel chair/stroller for 6 weeks as he can't put any weight on his casts. That can be the trying part, but with patience it all seems to become so much easier than we originally think.