Journaling our Journey with Blount's

Ok, so I decided to finally start a blog. One of the main reasons for this is that I realized that there appeared to be very little support resources available for children diagnosed with Blount's Disease. I want to create a journal of our experiences to share with other families of children in order to assist them on their journey. My hope is that they may find comfort and support in knowing there are others out there who have gone through this and have survived to tell their story. I know that may sound dramatic, but as a parent whose child has been recently diagnosed with this disease, I have found it very difficult to find the support from other parents of kids with Blounts.

For those of you unfamiliar with Blount's Disease it is a bowing of the legs that can get progressively worse if left untreated. Most children, when first learning to walk DO have a slight bowing of the legs. Within a short period of time, the legs SHOULD straighten out. In our case, it did not, thus the diagnosis.

We first discovered something wasn't quite right when Hannah was 18 months. She had learned to walk a week before her first birthday. Nothing unusual there....she was right on target.
But by the time she was 18 months we suggested (on the advice from my wonderful MIL) to ask the doctor about the slight bowing of her legs which we had noted. Our pediatrician did notice it too, and referred us to an orthopedic specialist at Children's Hospital.

We made our first appointment with the orthopedic specialist at Children's shortly thereafter. He took x-rays of both legs and told us that it COULD be Blount's Disease, but he thought it was something slightly different called Interior Tibial Torsion. He told us that she would most likely outgrow this condition (ITT) and told us to come back for a re-check in 1 year.

We saw the orthopedic specialist in October 2009 (right before her 2nd birthday). Going into this appointment, I assumed he would tell us more of the same...(just let it fix itself she will outgrow it). They took x-rays again (and our amazing little girl did so well, even if mommy wasn't able to be in the room with her as not to hurt the baby inside mommy's tummy!) To my surprise and dismay, the x-rays showed an increase in the bowing. The orthopedic specialist then told me she probably would NOT outgrow this condition and that she would need braces. He never mentioned she had Blount's Disease to me. He wrote out a prescription for KAFO (Knee Ankle Food Orthotics) braces and directed me to a place within Children's Hospital called HANGER othotics to get fitted for them. It wasn't until I looked at the prescription that read clearly (imagine a legible doctor's handwriting!) Dx: BLOUNT'S. I was dismayed to say the least....a LABEL. Ok, so now what?

We make an appointment with HANGER a week or so later. They then take a cast of both of her little legs...of which she finds uncomfortable...especially when they are sawing the casts off of her with a loud cutting tool! Like most 2 year olds she does not like to be restricted. But needless to say, we were able to calm and sooth her. The HANGER Orthosist then tells us that they are awaiting insurance approval before they can proceed but that it should be approved within a week. We are also told that the braces do not come with shoes and that we would need to purchase a pair of high top, lace up, harder soled shoes that would be fitted with the braces. That shouldn't be too difficult, right??? WRONG!!!

Our search for toddler shoes that fit this criteria was very exhausting!!! We spent countless hours contacting local retailers, searching the internet, etc. and became frustrated when our searches were unsuccessful. I talked with our pediatrician for suggestions on retailers and was unsuccessful, we talked with a pediatrician who is a family friend....unsuccessful. We talked with the orthosist at HANGER orthotics....no help. I searched a local mom's network website for suggestions....no help. It seemed that no one out there has ever had experience with this before!! I felt so alone. I felt so exhausted. I didn't think that this was supposed to be the hard part. I figured getting my independent 2 year old to wear them was going to be the DIFFICULT part!!!

We also contacted HANGER orthotics the next week to see if they had obtained the insurance approval. They had not. So I contacted my insurance company to check on the status and the insurance company stated they have no record of anything ever having been submitted for approval from HANGER. I then called HANGER back to inform them and verify that it had been sent. They stated their computers were down and that their files did indicate it had been previously sent, but that they would resubmit the paperwork ASAP. Hmmm....ok??? Hmm....not sure what was the hold-up then...

I waited another week before contacting the insurance company. They still had no record of a submission. Hmm... I immediately called HANGER orthotics to inform them yet again and was told that the person I needed to speak with was unavailable until the following week.
This got me very upset, but I remained outwardly calm. I do not like being the "squeaky wheel" but I was feeling like I was getting the run around. Finally, I called the Orthopedic office and informed them of my experience and frustrations. The receptionist there was very helpful and got me the answers I needed. Lessons learned..."The squeaky wheel DOES get the oil!"

So now we are able to get the orthotic braces. We make an appointment to pick them up and get instructed on how to use them only to find out that they were assembled incorrectly and we would need to reschedule. ARGH!!! SERIOUSLY!? Glitch after glitch after glitch.

So we finally got the braces 3 nights ago. Hannah is doing surprisingly well! Better than expected and better than her mother!!! She is so strong and truly an inspiration. She is unable to bend her knees so climbing is difficult. I am sure she is worn out by the end of the day, but she continues to have more strength than I ever could have imagined.