's setback - CT Scan

[Guest guest]

As most of you know , (4 years old now, whom we brought home

from China at almost 3 years of age with untreated bilateral

clubfeet) and I returned to Iowa in February due to problems with

's right foot after 5 months of casting (17 cast changes and

ATTT on both feet). Her left foot is perfect now and progressed the

way it should have when we got home after having her casts removed in

January. However, her right foot never got the full range of motion

and suddenly stopped on us within two weeks of coming home. I

immediately called Ponseti when it happened and he had us do an hour

of formal physical therapy everyday for a week to try and improve our

range. After a week of this there was no change. They were going to

have us return to Iowa and then she suddenly started taking her first

steps without her walker so they wanted us to wait another week and

see what would happen. We continued with the hour p/t everyday.

Still no improvement so we headed back to Iowa. They were thinking

they would probably do a few more castings and then a heel cord

lengthening to correct the problem. Ponseti said over the phone that

he wasn't too surprised as her right foot was the most difficult one

anyways.

When we returned to Iowa both Ponseti and Morcuende determined that

she would need a second surgery on that foot, but this time it would

be bone surgery, an osteotomy of the tibia. Ponseti said casting

would not help at this point. I was shocked and disheartened. They

needed us to wait about 4 months to do this surgery for her to regain

the strength in her legs after being casted for 5 months. (When she

got out of her casts she couldn't even stand or crawl.) They also

didn't want us to lose anything we gained with her left foot by doing

surgery too soon and putting her back in a wheelchair since her cast

will be no weight bearing with that type of surgery. The plan was to

return home, continue with physical therapy at home everyday and

check in with our physical therapist once a week. They did not want

us to lose any range of motion in her right foot; the goal was for us

to maintain that range of motion. If at anytime we lose any motion

in that foot we need to return immediately. I asked if they thought

we would gain any motion and they felt we would probably not, due to

the fact that they think she has very little cartilage in that right

foot to work with.

Dr. Ponseti did have Dr. Pirani from Canada see her in October when

we had some problems with her right foot not responding very well to

the casting back in Iowa then. (Some of you probably know that he is

a pediatric surgeon, originally from Africa who was exiled by then-

president Idi Amin in 1972. In 1998 when he returned to his homeland

of Africa for the first time, children with clubfeet touched his life

forever. He then started the Uganda Sustainable Clubfoot Care

Project to help the huge amount of untreated clubfoot children in

that country. He has returned to Africa for one month every year

since then to help these children and educate more doctors in the

Ponseti Method and tackling the challenges of distributing supplies

and accessibility of treatment to clubfeet children there.) Due to

this, he has great experience with treating older untreated clubfoot

children. After observing and manipulating her feet back in

October during a cast change Dr. Pirani said he had never treated a

child with a foot as stiff as her right foot. That was surprising to

all of us, as he's seen so many older untreated children. So as you

can see that foot has been quite the challenge all along.

The big problem after she got her casts off was that we were short 20

degrees on her right foot in dorsiflexion when that problem started.

(Ideally we need to gain 30 degrees overall for things to be really

good.) The good news is that we maintained this range in the first 3

weeks we were home from Iowa. The amazing news is that as of 5 weeks

ago, in just one week's time we had gained 10 degrees of dorsiflexion

in that foot. I couldn't believe it. I had her physical therapist

measure her 3 times during our hour session to make sure this

measurement was not a fluke. We have continued to maintain that gain

which has astounded all of us. Her ankle was immobile before,

however now we actually have gained some movement in the ankle

itself. Due to this, Dr. Ponseti is now thinking that maybe there is

a chance she has more cartilage in that foot than what they thought

after taking x-rays back in February. They felt then that the

cartilage in that foot was so thin that they didn't have anything to

work with. So Wednesday morning I will take her for a CT Scan of her

feet to determine how much cartilage is actually in the joint and

side of her right foot. If she has more cartilage than originally

thought then we may be able to correct the problem without having to

do an osteotomy of the tibia. I am just so thrilled that there is a

chance for an alternative to the first plan of action discussed back

in February. is such a good sport about doing her exercises

and all everyday. Her walking has improved dramatically. We have a

lift in her shoe as Ponseti instructed us to do which has helped to

correct the hyperextending of the knee when she started walking and

we've also been working in the last month on exercises to improve her

upper leg strength in addition to the other exercises which has

helped pull her feet in closer together as she walks. (Before she

was walking with them angled out at about 12 " apart below the knee.)

She is an amazing child!!! We are so blessed to have her! I just

pray we get good results.

Joyce

age 4 years, bcf ATTT 11-18-05