Ben's Fourth Appointment With Dr. Deering...

Ben, Waiting to Get Xrays

Well. we had another visit with Ben's Orthopaedic Surgeon, Dr. Deering, this past week. On this visit we had Ben's legs X-rayed, so that we could see whether the disease in his knees was causing his bones to worsen; or if the KAFO's were able to start correcting.

The last time we took X-rays; it seems as though the "beaking" on Ben's left Tibia was on the verge of fracturing. If the bone had started to fracture this time, it  would put Ben at a Langenskiold Stage of 4.



Langenskiold Staging

 Ben was not to thrilled about getting more X-rays.... He screamed and cried and had to be held down by myself and another technician. Luckily, his legs relaxed for all of two seconds; and we were able to get a good picture.

When it was time to see Dr. Deering, she seemed very pleased with the way that Ben looks now. Almost surprised at the progress he has made. Dr. Deering let Ben play on her iPad; while she looked at his legs; twisting and turning them to see the severity of the disease. She told me that not only are Ben's knees very affected with Blounts Disease, but because of how much disease in in the left knee, it is also affecting his left hip. While Ben was laying on his tummy, Dr. Deering showed me exactly what the problem was by holding Ben's left foot and ankle, and then slowly "cranking" his leg to the outside of his body. I was a little taken back at how far she was able to go; and by the fact that it didn't seem to bother Ben at all! As I have said before; my concerns as of lately have been more focused as to the rotation of Ben's legs. Really, all we can do is try and use the Thera Tog more; and keep moving forward.

Dr. Deering and I also discussed Ben's ankles. I have also been concerned that they seem to be "caving" inwards. She explained to me that most children his age are "flat footed"... but that Ben is a little more than that. Because of everything else he has going on with his left leg, she wrote me a prescription for his right foot. Something called an "Arch Angel"... I will update with more information after I do some more research. Basically, it is an orthopaedic insert for the shoe.

On to The X-Rays...

I feel SO good about these new x-rays! Ben's knees look amazing, in my opinion! Dr. Deering was also very excited and enthusiastic while we were looking at them. The tip of the tibia is still beaking; but not as much as it was in January. Also, it doesn't look even close to fracturing now. Which is AMAZING! On a Langenskiold Stage, Ben would be in between a 2 & a 3... closer to a 2.

June 2011

January 2011

Ben is going to continue the use of the KAFO and the Thera Tog until we go back to see Dr. Deering, in four months, in October. In October, it will be one year since Ben got the diagnoses of Blounts Disease. We have a PT appointment with Lisa coming up also, so I will update again soon!

Thank you all again, for your continued support! I hope to hear from more parents soon! If you have any questions, or would like to share your story with me... Please email me at ...

BenHasBlounts@gmail.com

Doing More...

At the beginning when your child gets diagnosed with Blounts Disease; there is sometimes a long wait in between appointments and fittings. I know how frustrating it can be to want to help your child as soon as possible. There are a few things you can do from the very beginning; that will help your child start the healing process.

"W" Sitting...

Probably one of the most important things you can do!! Don't let your child sit in a "w" position!!

I noticed with Ben; that even if he "sits right" all day long... he ALWAYS "w" sits in the bath.

Here is a video I took of Ben "w" sitting while he was playing...



Of course, while your child is wearing a KAFO brace, they are only able to "sit right". "W" sitting can undo an entire days worth of bracing. All children, not only those have have Blounts, should never "w" sit; it is extremely hard on the joints.


Physical Therapy...

I am a big time believer in the benefits of PT! In my opinion, it is an essential part of the treatment for Blounts Disease. Often times, the wait to get an appointment with a specialist can be anywhere from a few weeks, to a few months. Going to PT in the meantime may give you some peace of mind; as well as help your child. You can go to any PT you like. My advice though, would be to call your specialist's office and see which PT they use. That way, it is easier for the specialist and PT to communicate. If they don't use a PT; my advice would be to find a PT that is familiar in pediatric physical therapy.


Finding Support...

A good support system is key when dealing with any obstacle, especially a rare disease. When we first found out that Ben had Blounts Disease last fall, I was unable to find any type of support group in our community. I was also unable to find a forum or discussion group online for Blounts Disease. I really just wanted to talk to one other family who could understand how we were feeling. That is why I started this blog! Now, there is a group on Facebook called the "Ben Has Blounts Network". It is a great resource where families can get together, ask questions, give advice, and discuss concerns. Families, and people JUST LIKE YOU; who are trying to understand Blounts Disease, and get the best treatment for their child.


Remember... Take care of yourself! You are the most important advocate your child has. If you are unhappy with the treatment you are getting. Or, if you don't think the brace your child is using is working... Get another opinion! Do what ever you have too, to ensure that your child is getting the best care possible. Stay positive; and follow your instincts.

Have any questions? Want to send me a private email? I'd love to hear from you!

BenHasBlounts@gmail.com



First Event... In The Bag!

I know some of you were wondering how "Bounce for Blounts" went... It went great!

The event lasted 3 hours... The first hour was Pretty busy,

The second hour was steady,

& the last hour was dead...

But, all in all I thought it was great to get the first event under my belt. It was a learning experience for sure!

BHB has a few more fundraisers and appearances this summer; I will put them up as soon as I know the dates for sure!

Here are some pictures from "Bounce for Blounts"

JumpTime Colorado!!

Hotdogs!!

Ben... The Tiger!



Bouncing!!