N's Progress Updates

October 2017

One year ago and now, glad we're free from the Mitchell Brace (bnb)!  Here's N helping make adjustments at her check up with Jerald. It's so helpful to have a team to work with on this clubfoot journey!

July 12, 2017

A HUGE Celebration

A year ago my daughter’s bilateral clubfeet (bcf) were being treated with the Ponseti Method of Clubfoot Treatment but little did we know, treatment was failing her and her feet were becoming complex.  Complex means that the issues associated with clubfoot like tight tendons, ligaments and soft tissue in the feet, were being compounded.  The doctor had outlined Ponseti treatment and because her bcf was a surprise at birth I hadn’t had any time to research. My gut began telling me something was wrong and on a friends advice I searched the internet for support on this journey. I found clubfoot facebook groups and everything changed for the better. We traveled to see one of the leading Ponseti Clubfoot doctors and in just 4 casts and a tenotomy which is where they cut the achilles tendon allowing it to regrow to the proper length in hopes of sustaining correction, the doctor had, we thought, corrected the mess 13 casts and 4 other doctors had made of my daughters feet. 

Finally we began bracing at 5 ½ months old, during the day she didn’t mind them but she could not sleep longer than 45 minutes to 2 hours. I clung to the advice that if we were consistent, she would adjust. Fast forward 4 months, she still wasn’t sleeping and she thrashed and cried. all. night. long! Tears streaming down her face. I saw a post from another mom who was using a single leg brace with great success. I began doing my own research, I found and talked with other parents who had used the brace and read about how the brace worked. This took some time and in April I took my little one to Maine to be measured and fitted for the Cunningham Brace/DTKAFO. This was the right choice for us! 

My daughter has been in the DTKAFO for just over 3 months now and our quality of life has greatly improved! She only wakes 2 to 3 times in 12 hours and isn’t crying at night anymore. She can stretch and even walk in the brace but since taking her first steps a little over a month ago she’s now walking everywhere and wearing the brace for naps and night time. At my daughter's first check up, which we did at a local hospital where both the Ponseti and French Functional Methods of CLubfoot Treatment are practiced, the doctor reported that our little one’s flexibility is excellent, that her bones are perfectly aligned according to his physical exam and xrays. The doctor said that he doesn’t think she’ll ever have a recurrence!!!!!!! I burst straight into tears! Always follow your gut intuition.  You know what’s best for your child, fight for it, clubfoot treatment is quite challenging but there are many avenues to success, keep looking, you will find what’s right for your family!

 

May 8, 2017

Hi everyone, here is our first update. My love has now been in the brace for a month. She was previously in boots and bar (bnb) for 7 months and she was waking every 45 minutes to two hours crying and thrashing as if she was in pain, tears streaming down her face! (it’s been a long year with improper casting lasting 5 1/2 months and then bnb!) She is 13 months and getting molars and had a cold right after we got the brace but her teeth are mostly in and sleep has improved a lot! She doesn’t mind the brace at all if it’s on when she’s awake and playing but she is almost walking so she wears it for naps and night time. 

I am so grateful for this brace because it has given me some hope that she won’t relapse which I didn’t have before using it. We’ve had an incredibly hard clubfoot journey. We were surprised by her cf at birth and when the Ponseti method was explained at our local children’s hospital (we live in Washington) it sounded very straightforward and they led us to believe after casting and tenotomy she would be ‘cured’. However, the weeks went on and her feet became very complex (the issues associated with her clubfeet-tight tendons and tissue, was being compounded because the team of doctors were improperly treating her feet.  Once we realized she was receiving failed Ponseti Treatment we traveled to Iowa for corrective treatment when she was 4 months old(she'd had 13 casts), she had 5 more casts including the post tenotomy cast and at 5 ½ months old she finally went into bnb. I never imagined she wouldn’t adjust to bnb. 

We started with the Ponseti bar and after a month tried the Dobbs bar. I have been doing cf research since my little one was two months old and because of all the trouble we’ve had with treatment I’ve been very concerned she would relapse (for complex clubfeet there's about a 70% relapse rate with the Ponseti Method) and I would do everything I could to prevent any surgical intervention including a second tenotomy. 

I researched the DTKAFO for a few months after initially seeing it in Delphine Le Boulanger Reid's updates on the facebook groups "Clubfoot Mommas" and "Clubfoot is Treatable" and after numerous conversations with families using it and Jerald Cunningham the orthotist in Maine who custom fits the brace to each child, we decided it was really the best option available to us. After all we’ve been through and the research I’ve done I’m incredibly confident in the DTKAFO and Jerald’s ingenuity. 

Finally, I’m hopeful!

Here’s my love going on about the business of play within minutes and hours of being fitted for it.