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