If You Or Someone You know Has Blount's Disease, I Really Want To Hear From You! Please Email Me!

Now, there is a place to go... Now, we are no longer alone...

BenHasBlounts@gmail.com

Wednesday, August 22, 2012

Ben Had Blounts...

Hello World! This is post is SO long overdue! Every few months over the past year, I have sat down to write to you all; and the words have not found a way out... I am here though... So here we go...

What a crazy, wonderful, insightful year it has been! BHB has a community on Facebook that it growing everyday. I am still getting emails from families all over the world on a regular basis. And, although I LOVE hearing their stories, and meeting new people; it breaks my heart that our children have to endure the heartache along side us. Everyday I read a story that inspires me; and when a parent that I have maintained contact with for a long period, finally is able to start treatment for their child, I am overjoyed.

I can still remember the feelings of horror and disbelief we felt when Ben was diagnosed with Blounts Disease. I can still see those frightening images we came across while doing our research... Although those images are still out there, now, there are images of Ben. 

I can still remember when I was such an emotional wreck, grasping, and hoping, and reaching out on message boards just trying to find ONE person who could tell me what would happen to my precious boy. What does Ben's future hold? I still have the email from the first family who found my blog; and I can still remember the relief in knowing that we were not alone on this journey.  

I can still remember staying strong, and acting normal through countless doctor visits; and x rays, and castings. When really, I was terrified. Scared that Ben would see through my smiles and tickles, and we would both fall apart.

But...

I can also remember the first time I saw Ben walk with his feet pointed forward; and how accepting all of the kids at his preschool were; that they never, not once asked why Ben had on braces. I remember every email, every name, and every country of the people I have come in contact with.

And...

I remember going to our beloved Dr. Deering's office last Fall. Getting Ben's x rays back and seeing that he no longer was considered "Blounts"... He no longer needed the braces we had hated to love... And now I can say, "Ben Had Blounts".


Monday, June 20, 2011

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

Sunday, June 12, 2011

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



Wednesday, June 8, 2011

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!!


Friday, May 27, 2011

It's On!! Bounce for Blounts Information!!

Bounce for Blounts Information

I'm so excited about this event! I hope to see everyone there!
I have had SO much support from our community;
without that support, this would have been nearly impossible!


Here is a map, just in case you need it!



I want to mention a few people who have made this event possible...

Thank you Ed, from Buds Signs for donating the banners we will use at B4B...

& also to Roger from Partyland for donating a tent for us to set up our information booth...

& also to Mesa Developmental Services for designing & printing flyer's!










A BIG "shout out" to JumpTime Colorado
&
Whaz up Dawg

You guys were the first on board; and I can't wait to see you at the event!!

If you have any questions about Bounce for Blounts or Ben Has Blounts, please email me at BenHasBlounts@gmail.com

Saturday, May 14, 2011

BHB Local News Coverage...



Recently, BHB has had a lot of local press; which is super exciting!

I wanted to share with you, the recent article in the Daily Sentinel

And thanks to that article, I was approached by a local news station for an interview.

Unfortunately; the news station is having some technical difficulties, so the story is not longer available online. However, I took a recording off of my television to share with everyone!



Special thanks to Matt Vanderveer, from KKCO 11 News in
Grand Junction, CO
& to
Richie Ashcraft from The Daily Sentinel in
Grand Junction, CO

& last, but not least...

A HUGE thank you to Lindsay Ellis from
She has been a great support & resource for BHB

Help Me, Help You...



What if... Every time a child was diagnosed with Blounts Disease,
Their parents had a place to go...
That had all of the information on the best care available
in the area where that family lived?

It is possible!

I need your help. I would like to start a database of doctors, physical therapists, orthotists...
And I would like to start with you.

Where is your child being treated?

Who is your child's Doctor?

What type of treatment is your child getting?
( surgical, non-surgical, bracing, PT, etc. )

What kind of brace does your child have?

Who provided that brace?

Are you satisfied with the care you are getting?

Do you need help finding a different provider?

We can all help each other get the best treatment for our kids. Please email me, and tell your story about Blounts Disease. I truly will do everything I can to help you find the answers to any questions you might have... and in turn, I can gain more knowledge, to help more families.

Even if you live outside of the U.S. !!!

I want to hear from you!

Please email me @ BenHasBlounts@gmail.com

Together, we can make a difference; one family at a time!