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!!



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

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

Grand Valley Moms for Moms...

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!



"Bounce For Blounts"...

I have been SO excited to share this news with everyone... and I'm done keeping it to myself! BHB is going to have its first official event! I don't have ALL of the details worked out... but here's what I do have:

~ June 4th, 2011

~Longs Park in Grand Junction Colorado from 11-2p.m.

~ So far, I have bump& jumps, courtesy of "Jump Time Colorado"

~ 'Whaz Up Dawg' hot dog stand will be there

~ Face painting, and plenty of other things for children to take part in. The cost for the bump & jump will be per family, not per child. I will make a formal posting as soon as I hear back from a few more people.... I think its going to be GREAT! I hope to see everyone there!

Shea's Story...

Recently I was contacted by a mother named Zoe, who lives here in Colorado, where I also live. Her daughter Shea, has just been diagnosed with Infantile Blounts Disease. Zoe is doing a great job at gathering information, so that she can be the best advocate for Shea. She is also brave enough to share Shea's Story with all of us... This is what Zoe had to say...



Beautiful Shea...

 Shea (18 months) was diagnosed with Blount's Disease (Tibia Vara) in April of 2011.  We are trying to find the best answer with the least amount of risk for her treatment.  One of her doctors is suggesting surgery but we are getting some other opinions to see if bracing might be an option.  Shea has a great spirit and is an amazing lil girl with lots of energy and love to share with the world. Both of Shea's legs are curved the angle is R 20* L 30*.  She started to walk at 91/2 months and has been in the 97% for height since she was born but she is not overweight.  We tried the Dennis Brown bar for 6 months after being informed she had Internal Tibial Torsion.  Due to the fact that she was so young Blount's could not be verified.  Shea has had no improvement, and now has the diagnosis of Blount's.  We want our lil girl to get a chance to lead a normal active life and are prepared to do anything and everything to make that happen.  I want to thank Kira for starting this blog to open people's eyes to this rare condition and having a great support system available for the families that are dealing with this situation. ~




Shea Playing... if you look closely, you can see the
 signs of Blounts Disease



I am so happy that BHB is a place where our stories can be heard. There are many children who are struggling with this disease. The more we share, the more families we can reach & support.

Thank you

Zoe, for being a voice

for Shea; you are an inspiration!

You can view a video of Shea on BHB's YouTube Channel...

http://www.youtube.com/watch?v=qXmaa7ZUu6c

Unique Streaks Raffle...

This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.

Now Let's Help Some Kids!!!

April Updates...

There is so much going on with BHB this month! I haven't blogged in a while; but I am working on a few things that I hope will give some insight and helpful information to everyone soon.

I did want to let you know the latest happenings with BHB becoming a non-profit, and all of the fundraising I have been trying to do...

Recently, I was interviewed by the Daily Sentinel, which is the local newspaper in my community. There is already a story online; and there will be another story next week, in the actual paper. A photographer came out to the house today to take pictures. Ben did great! Blew bubbles, and splashed us with the bottle! Then, of course, I turned the camera on him!



Ben & Dean Humphrey from the Daily Sentinel

The Basketball Raffle concluded yesterday. It didn't go as well as planned; but I am going to stay steadfast & keep having raffles! The next one is for gift certificates to a local salon; I think it will go over pretty well!

I am also working on an event that will be called "Bounce for Blounts" that will be held later this summer. I am working with a lot of local vendors, and some friends.... I am REALLY excited! I will keep everyone updated when I have all of the details!

Please know that I am working as hard as I can, to get BHB up & running! I am SO eager to start really helping the families who find me. We need treatment for our kids! Treatment that works, and doctors who know what they are doing, and how to treat Blounts Disease. It breaks my heart, when I hear that a family is unable to find the support of physicians because their child doesn't meet the "stereo-typical" standards that were brought forth years ago!! Blounts Disease affects kids of ALL races, ALL backgrounds, ALL body types...

I want to hear from you! Who is your child's Doctor? Are you satisfied with the level of care you are getting? Would you recommend the doctor to anyone else struggling with Blounts?

Email me @ BenHasBlounts@gmail.com

Ben Has Blounts 'Network'....

A few weeks ago, I set up a Facebook page for BHB. If you haven't seen it; you definately should check it out! I haven't found another forum where as parents we can get together; ask questions; and share our stories. I honestly believe that through eachother is how we will learn more about this disease, and the treatments offered.

So many times, as parents we feel that we aren't doing enough... If we only did "this" better. Or tried harder. Or found the right information... Give yourself a pep talk! You do the best you can! If you have an idea or a question that you need to have answered, why not try a forum specifically for those who are struggling with Blounts? I can tell you, that when you are able to talk with another person who is going through the same thing it is such a comfort!

If you or someone you know has questions about Blounts Disease, I want to hear from you!

Email me @ BenHasBlounts@gmail.com

Or come join the 'Network' on Facebook!

http://www.facebook.com/?ref=home#!/home.php?sk=group_190868670933387&ap=1

Basketball Skills Session Raffle!!

So happy to have this first raffle going! A special "thank you" to Lindsay at http://www.grandvalleymomsformoms.com/, and her husband for donating these services.

 This particular raffle is for Western CO residents only, unless you are planning a trip to the Grand Valley! I have a few more raffles in the works.... so stay tuned for those, some of them will be better suited for people all over the U.S.

Remember that all of the money going towards these raffles will be used to pay the legal fees for BHB to turn into a non profit! Then the REAL fundraising will begin! Thank you all so much for your support these past few months; and a special thank you to the families I have met who are struggling with Blounts Disease. These families have let me in, shared their experiences with me; and are my motivation to keep moving forward with BHB.

Now Let's Help Some Kids!!!

Going All The Way...

The feeling I've been having of wanting to do more for  those affected by Blounts Disease has not gone away. If anything, it is growing stronger by the day! Last week I talked with a wonderful woman at a small law firm in California. I'm pretty sure I am going to be using their services to turn BHB into a Non Profit.

Its very exciting, and very scary at the same time. It is a big commitment... But I really feel that it is an important step that I need to take to really try and make a difference.

First things first... I have to have a "board"... 2-3 people; who I can trust to take on some responsibility and help me run BHB. At this stage in the game, it would require a few hours a week; getting on forums, raising money, sharing ideas, etc... It would be helpful to have at least one person on the team with experience in accounting.

I also need to pay the lawyers. Right now I am trying to raise $500 to make the first payment to them. The cost will be around $2500 total. After considering it, I think this is well worth the money. They take care of all of the filing, everything legal; so that BHB can be up & running as quickly as possible! It's really important to me that it is done quickly... Blounts Disease can worsen so fast, and I want to get to these kids before surgery is their only option.

So... I NEED YOUR HELP! If you have ANY ideas on how to raise money, or if you need help promoting a fundraiser for BHB... Please let me know! OR if you are interested on being a board member... please email me at BenHasBlounts@gmail.com

Thank you all SO much for all of your support thus far.... It's only the beginning!!

Officially Tweeting....

In an effort to get more people aware, and hopefully get more funding... BHB is now on Twitter! 

I have been wishing so badly lately that I could help families affected with Blounts Disease. Wouldn't it be nice if these parents could take their children to any doctor they want to get the help that they need? What is those same families were able to get braces and other treatment for their kids right away? Or help with physical therapy? If BHB had the funding, these are the things I would like to help with.  

It is my goal that within the next six months, BHB will have a non-profit organization status. I also want to have a new website that is more efficient so that everyone can find the information that they need and really be a sounding board for each other. I KNOW these things will happen; it just takes time and hard work!

So if you are on Twitter.. make sure to follow Ben Has Blounts!

http://twitter.com/#!/BenHasBlounts

Ben's Sixth Physical Therapy Appointment...

After an extremely long night of sleeplessness thanks to Ben.... we went and saw Lisa yesterday. Ben was quite uncooperative this go around. Of course I suppose that is what happens when a two year old wakes up at 3:30 in the morning!

Finally, after using a sucker to bribe him with... Ben started walking the hall so that Lisa could watch his legs. I was really hoping to get rid of the Thera Tog on his right side.... Even though it has done wonders for Ben; he seems to mind it a little more now. Instead, we decided to use a longer strap to wrap around his leg and keep it "out toe". We also added a Thera Tog hip strap to Ben's left side. Its a little tricky with the KAFO... But I am really glad that this hip strap will help with the rotation issue I have been worrying about with Ben's left leg.

Lately, it seems like when Ben isn't wearing his braces, he is ready to trip over his feet again. It makes me really sad to see him get back to this point. At the beginning, all we did was address his in toeing and his gate. We didn't have the KAFO brace, just the Thera Tog. Now that we are using the KAFO, his bones are looking better, his leg is straighter; but his rotation is taking steps back. Its a very frustrating time in Ben's treatment. I haven't met another person who has used the Thera Tog to treat Blounts Disease; so I'm not sure if this is a common issue or not. I guess I'll pave the way!

I also wanted to let everyone know, that the metal in Ben's KAFO is starting to make holes in his pants. I usually just put him in sweats so that it is comfortable for him. So if you are on your way to getting a  Blounts KAFO; I would recommend cheap pants and iron-on patches for the inside of the knee area.

This Is a video of Ben walking without  the strap on his right leg...

This is a video of Ben walking with the strap on...

The difference is subtle; but still a difference. We chose to keep the strap on to help with the rotation of his right leg. He also has the hip strap on his left leg (the leg with the KAFO) which is helping with the rotation of his right leg.



Has anyone heard of the Eight Plate? If you have any experience with this surgery; I really would like to hear from you! Please email me at

BenHasBlounts@gmail.com

Help With Your KAFO...

We have been very lucky that we haven't had any problems with

Ben's KAFO Brace. However, there are things that can happen that you should

be aware of. Here is a useful list of guideline's and things to watch for:

Tips and Problem Solving

• The KAFO should always be worn with socks and

shoes and also some type of fabric over the leg to

serve as an interface between the leg and the

KAFO to improve comfort and wick perspiration.

• The best type of shoe to use is a basic gym shoe

with the laces or Velcro extending well down the

front of the shoe. This provides adjustability and

allows the shoe to accommodate the added

dimension of the device in the shoe without having

an excessively large shoe on the opposite foot.

Gym shoes help to encompass the foot and to

secure the KAFO. Dress shoes and sandals are not

recommended for these reasons.

• If you notice red marks, bruises or blisters on your

skin, discontinue wearing the KAFO and call your

orthotist to schedule an appointment.

• If you have any problems or have questions, please

contact your orthotist.
 
 

 

I found this list on http://www.cpousa.com/cm11.pdf

 

There is a lot of helpful hints and information. I would suggest reading as much as you can before starting the

 

KAFO Brace; and make sure to have a good relationship with your orthotist! You will need them in case

 

there are any problems.

Now On YouTube...

I wanted to make it easier for everyone to find all of Ben's videos. So 'Ben Has Blounts' is now on YouTube! We have our very own channel that I will update as we make more videos. If you have any videos that you would like to share, you can send them to me at BenHasBlounts@gmail.com... I would be glad to add them to the collection. I think it is beneficial to take pictures and videos throughout treatment so that you can look back and see the progress being made. I also think that it is a good tool to use to show your children that they are not alone... there are other kids going through the same thing.

Here is the link to BHB's YouTube Channel...

http://www.youtube.com/user/BenHasBlounts

In the future you can access the site by searching for "Ben Has Blounts" on YouTube, or by looking under the 'Connect With Others' tab on the BHB Blog.

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

Today we went and saw Dr. Deering, who is his Orthopaedic Surgeon. She really wanted to see Ben walking with his braces on to make sure he was handling it well. Of course, he did awesome! We talked a
little about his rotation, and I showed her pictures. In her opinion, this is just part of it. There isn't really anything we can do about it right now. It was nice to hear that she has been to BHB, and thinks it's wonderful! We will go back and see her in 3 months. At that time we will have more xrays done to see how his bones are, and if the Blounts Disease is worsening. Here are a few pictures from our visit...



In Dr. Deerings Office... Waiting




Happy Boy!








After we got home Ben was in a pretty good mood. We went out back to play. I decided to take a short video to show everyone how well Ben gets around in his braces. It's one thing for me to say he does... quite another for you to see it yourself!

Our next appointment for Ben is next week. He has Physical Therapy with Lisa on the 24th! 

Gearing Up...

Ben has an appointment with his Orthopaedic Surgeon in a few days. I'm pretty sure that she just wants to watch Ben walking with his braces on to see if he is improving. I'm pretty sure there aren't going to be any xrays. Hopefully, we will have good news! I am a little concerned with Ben's rotation. Without the Thera Tog on his left leg I think it may be getting worse in some area's. It seems that his left knee it really facing the wrong direction. I don't know if this even is a cause for concern. I really wish I had taken stand up pictures when we were first diagnosed so that I could compare them.



The Rotation of the Left Knee

As for the Blount's Disease in his legs; some days he looks awesome, and other days it is more obvious. When I look back at old videos and pictures; I can really see the difference.

I will be sure and give an update after we hear what Dr. Deering says.

Remember to take pictures! They will come

in handy... I promise!

Keep Those Braces On!

During my research lately, I have been coming across a ton of posts by parents asking how to keep leg braces on their kids. I also had a mom ask me how I keep Ben from taking his off. I know how difficult it can be; so I thought I would give us all a little pep talk!

Don't feel guilty that you aren't doing enough! We all want the best for our kids and it can be SO hard to stay motivated. Especially when your child doesn't want to wear the braces. When Ben was only using the Thera Tog brace I would wake him up from nap a little early so that he was still sleepy and wouldn't fight me. I have also used cookies, suckers, videos on my cell phone... all as bribery to get him to hold still! I really saw a change in his defiance after I was more consistent with putting them on. Now he knows what I'm doing; and he even tries to help.

I think with younger kids, like Ben, it is easy to make up a song, or go through the steps in an enthusiastic way... "Let's put on the BIG sock now!".... "Push your foot in!"... "Wow you are tough".... With older kids however; I can imagine it being more difficult. Ben has two older sisters; so I am familiar with compromise! Here are some ideas you can use to get your older kids on board with the braces:

~ Let them pick out a family movie for everyone to watch...

      "You were such a big kid with your braces today, YOU get to pick out a movie!"

~ Pick an activity for them to do "brace free"...

      "Keep your braces on all day, and then on Friday, we can go to the park with no brace!"

~ Go to the store and pick a special craft, or start a reward chart

~ Show your child videos of other children with braces, let them know they are not alone

~ STAY POSITIVE!

These might seem like little things, and they are... but to a child, positive reinforcement is the best way! I would also hold your ground; don't ask if they will put on the brace; tell them they need to. This is just a part of life... If you aren't upset and frustrated; and you are confident, they will be too.

If you have a few bad days, don't dwell on them! Everyday is a chance to start over...Guilt will help no one. If you still can't get your child to keep the brace on, you might try vet tape. It's sticky on one side, completely flexible; and is safe to use over any type of leg brace. You can find it at feed stores and most medical supply shops. Here is a link to buy it online...

http://www.amazon.com/3M-Elastic-Adhesive-Tape-Inch/dp/B003IYGS24

I am positive that if I can keep Ben's braces on... You can do the same with your child! Don't give up!
Keep those braces on!

Ben during nap... wearing his braces. Thera Tog on the right leg and the KAFO on the left

How do you get your kids to keep their braces on? I'd love to hear your ideas!

Misconceptions...

For a few months now, I have been reading everything I can on Blount's Disease. Some things, I don't fully understand; thanks to the medical jargon... But I think I know quite a bit!

It is upsetting to me that when most people read something on Blount's Disease, they automatically assume that your child is obese. I honestly think that for the average person to read a medical definition of Blounts, is probably confusing... perhaps finding words in that definition that are more common, such as "obesity", the general public think that this disease is caused by "being fat"... All of us who have personal experience with Blounts know different!!

It is true that the deformity caused by Blount's Disease is due to the weight baring on the bones. For most people this is fine; but with Blount's kids... the bones don't handle it well, and they start to deform.

Another misconception I have come across is that during pregnancy, there may have been a deficiency in nutrients. This is also, not the case!

I have found some studies linking a chromosomal abnormality to Blount's Disease. Nothing decisive as of yet; but I think it is interesting; and I hope that someone somewhere does a study to look further into this possibility. I am confused though that some medical websites say that it isn't hereditary, but that it is genetic... Hmm...

Definition of GENETIC : Genetics, in biology, the science of genes, heredity, and the variation of organisms


Genetic, used as an adjective, refers to heredity of traits

CONFUSING!

So much about this disease is confusing. It doesn't seem like doctor's and patients are on the same page. A lot of the medical professionals writing the "definitions of Blount's Disease" aren't even on the same page as Ben's Orthopaedic Surgeon. Basically, what I have been told by our doctor, whom I LOVE, is that with Infantile Blount's, it is not due to obesity, it is not due to poor nutrition, and it doesn't seem to run in families.

What I know for sure:

~ Blount's disease is pro dominant in African Americans

~ When caught early, most kids will not have long lasting effects

~ Blounts is so rare that most pediatricians don't recognize that not all children grow out of bow legs and in-toeing... Most pediatricians don't even know what Blount's disease is!


As parents we are our child's best advocate... we know when something is askew. Keep fighting for your kids! Network, and get the information that you do have out there!

***Please note that I am not a medical professional; and that these are just my personal opinions***

Making Connections...

The reason I started documenting Ben's journey with Blount's Disease was so that I could make connections with other families and people affected by Blount's. I am SO thankful for the connections that I have made; and I believe that with more time, there will be even more friendships because of BHB!

I wanted to share with you a few of the wonderful communities I have found online. Although I have not talked to anyone else on these sites...YET... it's good to know that they are available. I would encourage anyone who has been affected by Blount's, or any other disease, to look at these sites and start connecting with other's.... Everyone has something in common! Everyone on these sites is looking for another person to share experiences with, or ask questions. 'Ben Has Blounts' has a profile on each of the sites listed under the "Connect With Others" tab. Let me know if you have any questions, or you need help! Let's start networking! If there is a site you think would be helpful, please email me at BenHasBlounts@gmail.com ... I'd LOVE to hear your ideas!

Ben's Fifth Physical Therapy Appointment...

Today we went and saw Lisa; Ben's PT... and our Orthotist John met us there as well.  Ben did pretty well, as usual! I made sure to bring cookies and suckers to bribe him with! That seems to work every time! When we go to PT, it's a lot of walking for Ben. Up and down the hall, fast and slow; with braces off, with them on. Today he kept saying "hold you"... I just try and stay positive and distract him. I'll admit, sometimes its hard not to just pick him up and take him home. I really hate the fact that he is put in the position where others are watching his every move. Where he has to walk a certain way so that he can be looked at. It's very humbling; and very emotional. I am always drained after every appointment. I know that the whole team that treats Ben is doing the very best job; and they have to do a variety of things in order to help him get better. I try and find comfort in that.

Lisa and John both agreed that Ben's left leg, which is in the KAFO brace looks awesome! His right leg though, is starting to turn in more. So Lisa figured out a way to put the Thera Tog only on Ben's right leg to help with his rotation. As soon as he started walking the difference was obvious. She also put an insert into Ben's right shoe, to help with the balance of his hips. Having one straight leg ( thanks to the KAFO ) was making him walk a little lop-sided.

Here is a short video of Ben walking with both braces on for the first time....

Ben still doesn't have any sores or blisters on his left leg; which makes me happy. Even though the KAFO was made specifically for him, this is just part of wearing braces. Every time we take the braces off, whether its the Thera Tog or the KAFO, I always rub his legs for a few minutes; I think it helps them feel better.

Lisa and I did talk a little about Ben's right leg; saying that here in a few months his left leg might be considered the "good one". We go and see our Orthopaedic Surgeon on March 15th. Our next appointment for PT is March 23rd. So for now we are just going to work hard with these braces and hope for the best!

Ben With Both Braces On... He's Standing a Little Crooked; But Look at Those Straight Legs!

Something New to Share & A Little Update...

In the past month I have come into contact with four families affected by Blount's Disease. You have already read Sophie and Tacarra's stories. There is also another baby who is under a year old; so he can't actually be "diagnosed" with Blount's yet... I also came in contact with a mom whose son HAD Blount's Disease; but is now Blount's free!

She did a good job taking pictures and videos to document her son's journey. I am thankful that she is so open to sharing her experience. A few days ago, she sent me this picture to share with all of you ...

I thought this was pretty impressive! And inspiring! I'm not a doctor, but it looks like this little boy was a 'Langenskiold' stage 2-3; right about where Ben is now. Looks like they got great results with the brace. Like Ben, they only had the brace on the left side. I know this mom worked very hard to get results this quickly. Thank you for letting me share this!

Tomorrow Ben has an appointment with his Physical Therapist. The Orthotist will also be there so we can figure out how to use the Thera Tog with the KAFO. Should be exciting! Ben wore his KAFO for 8 hours today! We have been slowly building up to wearing it full time. So far, he doesn't have any sores or blisters; I'm hoping that won't happen, but I know it probably will. The KAFO isn't slowing him down at all! He is still running, jumping and climbing stairs... AMAZING!! I will update soon with pictures after our next appointment!

New Contact Information...

The email address I was using wasn't working properly. Over the past few days I didn't recieve any emails that anyone sent. So I set up a new email address! Any emails I recieve; especially from anyone who visits this site, are SO important to me! If you tried to email me this past week and I didn't respond PLEASE email me again using the new email address! I really want to hear from you!! Hope to talk to you soon!

Kira

BenHasBlounts@gmail.com

On FaceBook...

I created a group on FaceBook. Nothing Fancy. It will be nice though to have a forum where people can ask questions and get answers from others going through the same thing! You can search on FaceBook for 'Ben Has Blounts Network'... or click here...

http://www.facebook.com/?ref=home#!/home.php?sk=group_190868670933387


Hope to see you there!!

After Diagnosis...

After the diagnoses of Blount's Disease a family can expect to go and see an Orthopaedic Surgeon. This doctor is the one who will set you up with Physical Therapy. Sometimes the wait list to see the Surgeon can be up to 3 months!! My advice to parents would be to educate yourself as much as possible. Take notes, write down questions. If the wait is too long and you want to do something in the meantime; find out what Physical Therapist your surgeon works with and see if you can make an appointment with them. This way, you can perhaps get a jump start on any treatment options.

When you do go to any appointment; TAKE YOUR CAMERA!! Take pictures of the xRays; if you can take video of your child walking. These are good things to have as reference.

Here are some examples of questions you may want to ask your doctor & physical therapist...


~ How many Blount's cases have you treated?


~ How many cases of Blount's do you see in a year?


~Will my child be in any pain and/or discomfort?


~How should I treat that pain? ie Tylenol, ibuprofen, hot baths, etc..


~Where does my child rate on the "Langenskiold Staging"?


~Do you have any literature I can have to take home and read?


~ If my child didn't have "Blount's Disease"; how would you treat his/her symptoms?


~Is there anything else you think I should know?

If you are like me; sometimes after I am home I think of a million more questions. If that is the case, I suggest making an appointment to sit down and talk with the doctor. If they aren't available; get a babysitter and take lunch to the office!! Do whatever is within your power to do to be as proactive in your child's care as possible.

I know a lot of the families who have contacted me have appointments and surgeries over the next few weeks. I am thinking of you! Please keep me posted! Good luck!



Ben, January 2010



Tacarra's Story...

The other day, I got an email from a wonderful young woman named Tacarra. She has been struggling with the effects of Blounts Disease from a very young age.... Tacarra wrote this to share with all of you...

Meet Tacarra...

"My name is Tacarra I'm 20 yrs old and. I live in Milwaukee WI, I've had Blounts ever since I was 9months. I have Undergone treatments, far as having leg braces to physical therapy to having numerous  surgeries as well.. I even had a metal rod sticking out my leg at a point of time which was very painful... Blounts is rare disease. And it is also a challenge. I'm glad that I've have came across Kira's Blog site it has inspired me knowing that people like Kira actually do care about those that are suffering from Blounts .. I wish nothing but the best to everyone families. And I will include you all in my prayers Let's us all come together and support one another."



Much love Tacarra!

 
 
~ I would also like to add that Tacarra is working on her very own non profit called "Blounts Counts".... I am so inspired by her and I wish nothing but the best for her! Please send her some positive vibes; Tacarra has a knee surgery coming up that will help with pain she has from the after effects of Blounts Disease.
 
Here is the link to 'Blount's Counts'' Cause page... lets show some support for this courageous girl!!
 
http://www.causes.com/causes/219861

Sophie's Story...

The following was written by the family I have come in contact with in Australia... They are going through hard times right now; and really need support!

Meet Sophie...

“My name is Sophie and I’m nearly eighteen months old.  I live in Australia.  Recently the doctors told my Mum and Dad that I have Blount’s Disease.  Very few people in Australia have ever been diagnosed with this rare and complex condition and information is very limited.  Like Ben, I’ll have to undergo expensive and extensive treatment to help fix my legs so that I can grow up to be like most other kids.

Mum and Dad say that Kira (Ben’s Mum) has been really helpful and it’s given them someone to talk to about the condition and her experience’s with Ben so a very big thank you to Kira and her family.  Ben’s website has lots of information on the condition and it helps Mum and Dad know what to expect.  I’m hopeful that I’ll be able to have my own website set up so that we can also educate and help other parents of children with Blount’s.  I hope that you’ll be able to visit.  I’m also hoping that Ben’s and my website will be linked so you can read our stories.

If you can find it in your hearts to donate some money to our fund, please help.  Knowing that Mum and Dad will be able to give me the treatment I need will give them hope in what’s going to be a very difficult time for all.  I’m hoping that you’ll follow our stories.  Thank you for your support and kindness.  Sophie. "

This is Sophie's very own "Donate Button".... If you can give anything; it would be greatly appreciated! Sophie's family is going through a very hard time right now.

KAFO Brace...

Well today we made our way down to 'Western Slope Orthotics' to meet with John Morris. He is a super nice guy; and doesn't seem to mind my incessant questioning. The new KAFO brace wasn't as scary as I thought it would be. Still, it was quite emotional, and I found myself ready to cry. Ben wasn't very happy to have a new brace; he kept saying "brace off!" After we had it on and went over how tight to have which straps; we let Ben walk for the first time with it on.... By the time he found the toys he was happy again!


Ben watching us put on the brace.... not very sure what he thinks yet...




This is a close up of the brace right at the knee...




The brace at the foot...




Ben's entire leg in the KAFO Brace...

We have our next PT appointment next week. Hopefully we can figure out how to use this brace in conjunction with the Thera Tog. John, our Orthotist, is going to meet us at Physical Therapy so that the three of us together can figure out what the next step is for Ben. Until then; we are going to be putting Ben in the KAFO brace for a few hours in the morning; and then again in the afternoon so that he can get used to it. By the time we go see Lisa at PT; he will be in it full time. He may even be sleeping in it at some point.

I took a short video of Ben walking in the KAFO Brace for the first time~

Thank you to everyone for reading and helping me share Ben's journey. It means SO much... Keep sharing! Keep reading! You are helping my little boy just by reading my blog.... So again, THANK YOU!!

An Exciting Week...

This has been a wonderful week! I have stayed in close contact with the new family who found me. They have a daughter who is 17 months old who has just been diagnosed with Blount's Disease. We have been emailing all week long; sharing our stories and talking about our little ones. It is so refreshing to have someone who knows exactly how I feel; and who has all of the same fears I do.

Unfortunately, the family lives all the way in Australia! So I may never actually get to meet them. Also, the part of Australia that they live in, has been severely flooded; causing an extra financial burden on their household; including Mom, Dad, and four children.

I decided to see what I could do to offer support. Knowing the in's and out's of Blount's Disease, their daughter will no doubt need the use of a Thera Tog Brace. As with Ben; this is most likely the very first step in her treatment. After making a few calls to the Thera Tog team; and even to a WONDERFUL woman who runs 'MileStones Therapy' in Sydney Australia, I believe that we have secured a brand new Thera Tog for this family to have; free of charge.

I have been in the best mood all week knowing that I could be a part of something so great! Everyone I talked too was so amazing and helpful. Thank you Thera Tog! Thank you Erikka at MileStones Therapy! And a special thank you to Patrick Mahaffey at Thera Tog; he is the one who told me who to call to make this happen. I hope this is just the beginning; and that I can find a way to help more families. I am So thankful for the friendship I am building now with the family in Australia.

Ben gets his KAFO tomorrow!! I'll post again soon!

Here is the link to MileStones Therapy in Sydney Australia

http://www.milestonestherapy.com.au/

A Hope Fulfilled...

Today... I checked my email; which I have not done in a few days. There were TWO emails from parents whose children have Blount's Disease! As soon as I read the first email I started crying. I always knew I would make contact with another person struggling with Blount's. I just always expected that it would be an older person; someone who had Blount's as a child, or who had Adolescent onset Blount's. Both of the emails I received were from parents of children who have Infantile Blount's. I probably cried for the better part of an hour; and even now thinking of it I could cry some more! It means so much to me that there are parents out there who I can finally talk too... finally know about their journey... and finally be able to help someone at the beginning of their journey through Blounts. Thank you to everyone who viewed my blog and passed it on; and please continue! The day that there is a network for Blounts Disease is within reach!

On another note~

I got the call yesterday that Ben's KAFO brace is ready! We go in next Monday to fit it and make sure it's going to work. I will be sure and take pictures to share. That is one thing I am going to start doing a lot more of.... Taking pictures and videos. If you are a parent of a child with Blount's Disease, that is one thing I would urge you to do. Take videos of your child walking up and down a hall. It's hard to see the progress sometimes; and if you have a video to look back on, it is so much easier to stay motivated!

"Special Needs"... Maybe An Advantage...

We are still waiting to hear back from Western Slope Orthotics on when Ben's new KAFO Brace will be ready. In the meantime though, I have a few things to share...

I'm putting together pamphlets with the help of my friend Amy at Absolute Edge Design Company. She has been nice enough to donate her design services. So soon enough I will have 'Ben Has Blount's' pamphlets to hand out at various places. I am also going to be sending out the pamphlets to try and really spread the word. If anyone can think of a place; or has a place that could offer the pamphlets, please contact me.

Also, I have been a little stressed out knowing that next year Ben should be starting preschool. His big sister goes to a WONDERFUL Montessori School here in town and I really want him to join her. I had a few reservations as far as, would the staff be comfortable helping him his braces... will he be potty trained in time...and of course, how will we pay for two children to be in Preschool??? After talking with the staff at the Montessori School; I was put at ease. Everyone there is showing an interest in Ben and how he is doing. I also learned that because Ben is considered "Special Needs" now, I can probably get him into school through the 'Child Find' program.

So maybe "Special Needs" isn't as awful as I thought last week... Maybe everything is finding it's own way of working out. Maybe Ben can start preschool next fall and be a "normal" kid... And Maybe by then we will have more information about Blounts Disease, and maybe even have contact with another family affected.... Lots of Maybes

For More Information On The Child Find Project... You Can Visit...

http://www.childfindidea.org/

Contact...

I want my Reader's to know that the reason for this blog isn't only to raise awareness for Blount's Disease. I DESPERATELY want to network with other families who are affected by Blount's.

I haven't yet met one other person with this Disease.

If you have any questions, or if you know someone with Blount's....Please contact me!

My Email address is KiraHudson82@bresnan.net

Why Donating Is SO Important...

Recently I started receiving donations for the 'Ben Has Blount's Medical Fund'... Thank you thank you thank you!!! I wanted to break down a few of the costs that are related to Blount's Disease; so that you all know why donations are so very important...

~Every time we go to the Orthopaedic Surgeon it costs around $350; right now we are going every 8-  12 weeks

~We go to Physical Therapy once a month, and it costs around $300

~ The 'Thera-Tog' Brace that we have been using costs roughly $600

~ The KAFO Brace that we just got fitted for, is going to cost us over $3,000

Keep in mind that Ben only needs the KAFO on one leg right now. This brace will last us approximately one year. These are our costs just since Ben was diagnosed in October 2010. I didn't add the numerous other expenses we accrued from seeing other specialists and buying other braces before we received the correct diagnoses.

Our family is lucky enough to have insurance and a Health Savings Account to cover most of our costs. Right now my focus is too raise as much money as possible and give it to other families I hope to have contact with in the future, I can't imagine finding out that your child has Blount's and not be able to give him or her the treatment they need. I am also working on getting a non-profit tax ID number so that future donations will be tax deductible for those who donate.

Thank you so much to the few people who have donated already! I promise to use all of the donations in the most effective way. If we are lucky, and things keep going well for my family; we will be able to use 100% of the donated money to help another child or children... Again, THANK YOU SO MUCH!!

Getting Fitted For The KAFO Brace...

Yesterday we went down to get Ben fitted for his new KAFO Brace that we will use on his left leg. I was so nervous! I was completely prepared for him to be difficult; because I knew that he would have to hold still... But to my amazement, HE DID AWESOME!!

So earlier this week I put a call in to our Orthotist so that we could get Ben in for his fitting. I was told that there wasn't an opening until February! Well I knew that we couldn't wait that long... So I begged pleaded and bribed! Thank goodness for wonderful people who understand the process! We were able to get him in the very next day. So Ben and I went and picked up lunch to thank the staff for squeezing us in.

Ben was not too happy about being there. "Hold you Momma"..... for about 20 minutes. John Morris, the Orthotist, asked if he could take a few pictures. He said that he had only seen "true Blount's" a few times. I have to admit, a part of me hurt; but I of course let him take pictures of Ben's legs; you never know, maybe it will end up helping someone else. We tried putting Ben up on the table a few times and he wasn't having it! So we bribed him with a bread stick from the lunch we had brought, and that did it... he was content, and John got to work...



Wrapping Ben's leg with fiberglass...

Because the KAFO Brace will go from the tip of Ben's toes all the way up to his hip.... they had to wrap his entire leg. It will take almost 3 weeks for the brace to get in. And we got to pick from a variety of patterns; we picked "Ocean".

The Entire Cast of Ben's Leg...

The whole process took about 45 minutes. I'm so lucky that Ben did well, who knows how long it would have taken otherwise. When it was time to leave Ben cried because he wanted to stay; and when we finally got to the car, I started to cry. I was so prepared for it to be a huge struggle, I had all of my strength set aside and had focused on the expectation that we would have to hold Ben down and force him to be still... I guess since I didn't have to "be tough"... It all just came out. My kids amaze me everyday. Watching Ben do so well; and still be a happy content little boy is overwhelming; and I am so grateful.

Best in The Business!!