Wednesday, August 26, 2009

Worth Reading..:)

Extracted from nosurgeryforclubfoot forum..

Hi everyone,

We just returned from Iowa for a second opinion for 17 mos old DS (BCF). Met with Dr. M and Maria, who felt like old friends because I've read so much about them!! The hospital is beautiful and the clinic is awesome. Iowa City is a very nice small city full of incredibly friendly people.

DS was treated here in Detroit by a Ponsetti approved doctor. Dr. M said he did a good job, and used our pictures of DS's serial castings to teach his "students of the day". The only difference in our doctor's treatment verses Dr. M's treatment is for DS's tightening heel cord. It's been getting stiffer since taking off the shoes during the day so he can walk. Our doctor was talking about doing another tenotomy. I pushed for PT, which helped. Dr. M said it's common for this to happen once the shoe time decreases. In fact, keeping the heel cord stretched is one of THE most important job of the shoes. He gave us the option of PT for 20 min/day for 3-4 months, then recheck, or recasting for 2 times. We chose the casts because DS doesn't like the PT, plus it's almost a sure fix. So I will return to Iowa in 10 days for a cast change. Then we can remove the 2nd casts at home.

As far as the DOBBS BAR - Dr. M didn't say anything bad about it, BUT he did say there are only 2 papers (studies) on it so far, and the first paper was done using a slightly different model than is sold now. The concern is that the mobility allowed with foot flexion and extension allows the heel cord too much movement and it seems to start tightening up. They have seen 6 cases of tight heel cords possibly form Dobbs bar use already. (We got ours after DS's problem was noticed, so I don't think his tightness is from the Dobbs bar). Dr. M didn't tell us not to use it, but did suggest that if we did continue to use it that we definately should do the heel cord stretches. If it starts to tighten up within 6 weeks time, then he would recommend going back to the Ponsetti bar.

We also talked about the ATTT. Dr. M there's a long time study now that shows that the surgery doesn't cause any later-in-life problems at all (no arthritis, etc.), so if DS does need it later, not to worry at all. (We repeatedly stated we were trying to avoid surgery at all costs). He did caution us not to let anyone do it before the age of 3, because one of the foot bones isn't fully calcified until then. Otherwise, it's not the end of the world or a failure and shouldn't cause us any sleepless nights.

While we were waiting for our casting, Maria went over all the details about coming back to Iowa next week. The Ronald McDonald House takes requests, using severity of illness as their criteria, so we may or may not get a room. They do work with the local hotels if they're full. I just saw the lobby and family room area when I went to get on the list, but the place is very comfortable and inviting. There is a free shuttle to/from the airport and the hospital. We stayed at the Heartland Inn, which is undeer $70/night with the hospital rate. Free breakfast, light supper snacks, and a shuttle to the hospital are included. It was also very nice, and most guests are there for hospital reasons.

Then the best part - I turned around and there was Dr. Ponsetti!! I teared up, and just really couldn't express my gratitude enough. My child and many others will live completely normal lives thanks to the dedication of him and his staff. How can words ever be enough?? He looked at DS's pictures, touched his feet, smiled and nodded. He still goes to clinic regularly to see "his kids" and watch them walk. He is very excited about the upcoming Ponsetti races, so if you're in Iowa for the conference definately participate. He should be at the finish line watching and smiling.

All in all, it was a very wonderful experience. Lessons learned:
*If you're unsure about your child's feet at all - GO if you can. You won't regret it.
*The businesses around the University cater to hospital patients and their families. You will be comfortable no matter where you stay.
*Everyone at the Ponsetti Clinic will do absolutely everything in their power to help you in any way they can.
*Consider doing the heel stretches once your shoe time decreases and your child starts walking. It won't hurt and may help.
*Use your bar and shoes 14 hours/night faithfully.
*The Ponsetti-recommened doctors are very well trained and skilled at the method.
*Meeting Dr. Ponsetti is a humbling and awesome experience.

I hope our experience helps and encourages some of you on your club-foot journey.
Many Belssings,
Diane


Blog Author Note :

We went to see Dr Amnuay in Bangkok on 11th Aug.Dr Amnuay said Dania's feet seems to be normal but he need to know in details. He sent us for X-Ray.After X-ray, it was found that Dania's heel cord is still tight and was not as good as what he expected to be.Dr Amnuay told us that, we need to change the way we strech her feet. We need to do it more frequently. He also said that perhaps Dania need another tenotomy. Tenotomy means her tendon will be cut again and she will be recast for another 3-4 weeks. However, he said it is the last things that he wants to do seems Dania can walk, can run and can squat like any other normal kids.

Still, he wants to see more improvement when he see us for another 6 months..
We need to work harder..I wont let Dania's tendon to be cut again...
I'll make sure this time, the heel cord will cooperate..insya allah!!

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