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



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

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

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/