Looking for Feedback - Please help

[Chris]

Hello everyone, My name is Chris. I'm a college student in Ireland. Recently for my year project I was given the task of redesigning supports for children with SB. My first thought was to hit the nail head on and ask somebody I personally knew but she is out of the country for a few months so I decided to come on here. I hope I don't offend anyone by asking.

Basically my plan is to redesign supports to they are more comfortable and easier for the child to get into.

I was wondering if possible, anyone on this forum would give me valuable feedback/information on current supports and problems that caught their attention. It would be greatly appreciated.

I hope I posted in the correct forum.

Thank you for taking the time to check out this thread

Have a great day guys,

Chris

[Dodger67]

Please explain exactly what you mean by "supports".

[Chris]

Thanks for the fast reply :D:D I really appreciate it.

My lecturer mentioned leg supports. A support that connects to the shoes( a brace maybe?) Does that ring a bell?

[Dodger67]

Our American friends call them "Orthotics" as in AFOs (Ankle-Foot Orthotic), KAFOs (Knee-Ankle-Foot Orthotic), etc. They will be reading this in a few hours - so stand by.

They don't actually connect to the shoes (well not the current types anyway) back when I was a kid they were heavy steel and leather monstrosities that came with really fugly boots/shoes. Modern ones are moulded in lightweight plastic to be a thin form fitting splint-like brace that can be worn with just about any shoe that they will fit into. They are attached to the leg by velcro straps.

Read this: http://www.emedicine.com/pmr/topic172.htm

[Barb]

I took some pictures as we have been talking about an equipment album but it looks like I can't create an album that we can all add to. The next version of our software due out in a few weeks may allow this. For now, here are some pictures. Our only problem with any sort of bracing has been ankle pressure sores.
The shoes are Mossimo brand from Target (we have had the discussion on the forum about shoes for braces) The lining is taken out of the shoe and very loosely laced at the top. The small white insert can be worn with or without the braces and could be called an SMO but *I think* to truly be an SMO it needs a strap. The smaller blue brace is an AFO (ankle-foot-orthotic or orthosis) and the larger one is a KAFO (knee-ankle-foot-orthosis). The SMO part fits into the blue ones. The picture of the two together just show you his current cool design. He wears the KAFO on the left to control his knee from twisting in. But honestly the older he gets the less interested he is in walking and very rarely wears these.

[Dodger67]

What is SMO?

[Barb]

Don't know what it stands for but it is for just the ankle-foot

[smoop]

SMO = Supramalleolar Orthotic

[Barb]

SMO = Supramalleolar Orthotic
Thanks. I learned something new today :19a:

[joybell322]

Hi! If you're still looking for help with making AFO's better, it would be nice if they could be more breathable. My 6-year-old with spina bifida wears afo's but sweats in them even in the winter which causes skin breakdown. It would also be nice if somehow, they could be fashioned in such a way that enables them to go easily into "cute" shoes. My daughter loves shoes and dressing up, but we can't find anything other that Hatchbacks Footwear that has any dressy shoe that will fit her braces. Good luck on your project!

[mommy2cnj]

Both of my children have dealt with severe athlete's foot (feet) from wearing their leg braces. We ended up going to the doctor, and short of taking forever to clear the athlete's foot up with over-the-counter products, doc ended up giving us a liquid medication that we can apply to the feet; it actually stops the medicated area from sweating....said many people use it for underarms, etc., but it worked very well for us, thank goodness!

I would also like to add another "needed upgrade" to leg orthotics, RGOs specifically. If anyone's familiar with them, they'll know what I'm speaking of. RGOs are bracing that goes from foot all the way to hip, with a "hip band" on them. We've had them made by a few different orthotists, and there is always a bar that sticks out on the back of the "hip band", which makes it extremely difficult for a child to sit anywhere, other than seating without a back on it. You're asked to have the child wear them, but umm......kinda difficult with a bar sticking out from the middle of their back. (argh!!)

[Dodger67]

Could you post a photo of the "bar" please.

[Chris]

Hey guys, first of all I'd like to thank you for taking the time to reply.. Your feedback is much appreciated! I have taken your comments and suggestions and will be integrating them into my project. Sorry it took so long for me to reply, I've just been very busy with other college commitments.

So here's the update.. I have decided to deal specifically with KAFO's(this is subject to change though), I recently met with a 4 year old girl who suffers from Spina bifida..though she has the less severe case of Spina bifida, I was amazed to see what a determined little child she was! It makes this project more meaningful!

I have a few ideas in mind which I think may prove useful in the redesign! Although I have yet to speak with an orthopaedic surgeon as to how my ideas may be integrated into the design.

I was wondering if, you have a half hour to spare, would you be able to fill in a survey I made.. Any feedback is very useful and much appreciated! No personal details need to be included in the survey nor will any of the information given to me be used for something other than research for my project.

http://rapidshare.com/files/164792342/survey_1_.doc

Sorry about the download link, I tried to attach it to this post but it was too large. If you'd prefer me to email you the survey, please email me on email address below.

christopher.godfrey@mycit.ie

If you do take the time to fill in the survey, I'd appreciate it if you could email it to the above email address.

Thanks again for everything! I really do cherish any info received!

Chris

PS I'm really intrigued by the athletes foot problem, I will be looking into this in alot more detail soon.

[Chris]

PS.. Has anyone had problems with the metal rubbing against the skin, causing sores?

[Dodger67]

There is very little, if any, metal in most modern orthotics.
If there is any it is usually in the form of hinges or reinforcement and is generally kept well clear of skin contact.

[Chris]

There is very little, if any, metal in most modern orthotics.
If there is any it is usually in the form of hinges or reinforcement and is generally kept well clear of skin contact.The KAFO's I'm dealing with in the little girl seem to be mostly made from metal. From my meeting with her parents, it seems that very little is available here in Ireland with regards to support systems for SB suffers.

Here is a picture of the supports.. I have circled the area in which causes discomfort for the little girl, its mainly caused by friction, leaving red marks. I plan to just cover this area with another material but I wanted to see if anyone else has had this problem and if they found a solution.

http://i33.tinypic.com/dm2mmr.jpg

http://i38.tinypic.com/2l9jz4n.jpg

[Dodger67]

Put a soft leather (kid or chamois) sleeve over the hinge. Velcro it to the hip band to keep it in place.

[Chris]

Put a soft leather (kid or chamois) sleeve over the hinge. Velcro it to the hip band to keep it in place.
Thank you, thats what I was thinking, I just wanted to see if anyone did it differently :D

[angel]

Some of the best solutions are the ones you think of yourself. I used to modify my crutches all the time.

They are the forearm crutches and they have a little gold or copper button near the cuff (that holds your arm). It covers a little V shaped pin that holds the cuff in place. It was always the first thing to break on my crutches! I can't count the times i have fallen when it broke because the cuff would twist when it broke and I have almost broken my arm because of it. I finally figured out if i took that out and replaced it with a nut and bolt then cut the end off of the bolt (so it wouldn't rip my clothes) that it was much much stronger and eliminated the need to worry about that tiny little pin breaking.

Sometimes i think we should be the ones building these things!

Angel

[Dodger67]

There are so many things that we use that I feel could really use serious engineering analysis and redesign. Soft brass rivets in high stress locations is one of them!

[Theresa]

I agree, the bracing we have had is like something chipped out of stone! the walkers we have are almost worse, so big and cumbersome.

[Chris]

There are so many things that we use that I feel could really use serious engineering analysis and redesign. Soft brass rivets in high stress locations is one of them!

Feel free to mention them if you'd like, even just a small list. I'm meeting with an Orthopedic surgeon today to see if any ideas are viable.

[dahliafaolan]

Both of my children have dealt with severe athlete's foot (feet) from wearing their leg braces. We ended up going to the doctor, and short of taking forever to clear the athlete's foot up with over-the-counter products, doc ended up giving us a liquid medication that we can apply to the feet; it actually stops the medicated area from sweating....said many people use it for underarms, etc., but it worked very well for us, thank goodness!

I would also like to add another "needed upgrade" to leg orthotics, RGOs specifically. If anyone's familiar with them, they'll know what I'm speaking of. RGOs are bracing that goes from foot all the way to hip, with a "hip band" on them. We've had them made by a few different orthotists, and there is always a bar that sticks out on the back of the "hip band", which makes it extremely difficult for a child to sit anywhere, other than seating without a back on it. You're asked to have the child wear them, but umm......kinda difficult with a bar sticking out from the middle of their back. (argh!!)

OH GOD! I remember those torture devices disguised as orthotics! I wore those things until I was 8 years old and had to have my rods put in my back (glory glory hallelujah!). When they told me that I didn't have to wear those things any more, I actually broke out into the Alleluia Chorus! lol My problem with those things was the hinges at the hips and the knees. I was forever getting my skin pinched between them. That was a serious pain in the patella! And then mine had what I like to call the pop and lock hinges. They were fashioned so that they would lock while I would walk and then push a button and they would unlock so I could sit. The only problem was that they were fashioned in such a way that only my mom or my PT could unlock it so I could sit. Not to mention the things were so freaking heavy that you ended up looking like Frankenstein while you walked and it would take forever to walk a short distance!
Please if you can do anything to improve these mobile torture devices, please do!

[Dodger67]

:goodpost:My experience is practically identical to yours.

[angel]

Mine to! i wore mine from chest to feet for several years then they went to legs only. My mom finally said i don't see the point in this when the doctors told her that they would eventually take me out of them but i would never be able to stand up straight. They were not really serving much purpose. So my mom came to me one night and said "do you want to wear these anymore" of course i said no and they were taken off of me never to be worn again!!!
What got me was the fact that in kindergarden i was only able to stand or lay because i couldn't work the little hinge locks. Those days there were no accomidations for us. The teachers would help when i had to sit in a chiar or something but around the carpet i was laying on my stomach while the other kids sat with their legs crossed in front of them.


Angel

[dahliafaolan]

Well personally I've never really seen the point of those torture devices. The doctors said that me weight bearing as a child would help to prevent me from having osteoporosis in my lower extremities as an adult. NOT!!!! I'm 23 now and I've broken my left leg four times already (twice from catching my foot on something and twice from falls). Does that sound to anyone like it's been prevented? I sooooo wish they had had the standing wheelchairs when I was a kid and they could have left the Frankenstein braces at home.

Ok, I've got a question to anyone who wore those pop and lock iron maidens. Did anyone else notice they actually received more social stigma from the darn bracing than they did from the chair? I found that I did. It always seemed the kids were more afraid of the bracing than the chair. Though I think my school exploited that fact for my kindergarten graduation. They made me walk across the stage to get my little diploma in the RGOs and forearm crutches. Now this took a full two to three minutes for me to walk across the stage where I could have used my chair and took maybe 30 seconds. They said it would be good for my self esteem and my physical therapy stuff, but I think the truth is that they just wanted to use the pity factor to get more donations to their special ed department.

[Dodger67]

Yes, the "freakshow" factor really irritates the crap out of me and don't even mention "pity parties" unless you want me to totally lose it and blow up in public.
The only thing worse than that are the "Jesus freaks", they are utterly impervious to a negative response.

[angel]

You know i am not sure if the braces caused more stigma for me or not. I have been staired at everytime i went in public my entire life (i walk with crutches and although i am very quick and can keep up with everyone elses pace i still stick out because i bend so much) Since i started using my chair more (my sholders are just beat to hell from all the years of walking) I still get the looks. I don't even notice them unless they are just over the top but my husband does. My son is the worst about blowing up over that. I have tried to tell him to ignore people but he just won't. He gets pissed everytime we go anywhere.
As for Jesus Freaks i grew up in the penticostal church. My grandfather is a preacher. I have been hauled to the alter more times than i can count!! I hated ever minute of it and i really hated when another preaher visited the church because it was always a given that it was going to happen then. The thing i couldn't make anyone understand is that I AM FINE LIKE I AM LEAVE ME ALONE!! I don't want to be like you! I don't need to be like you! I get along fine this way and don't fell that you have a better life than me! But of course when you don't look like them all people just assume you have a miserable existance. I have to say I am glad I am here, just as I am, with no exceptions. One main reason is because I feel like i have a bit more insight to what really makes one happy. I fell like it has given me a solid perspective on what really matters and i feel like I can help other people who may not have that yet. SB just isn't that bad. some of the things we go through suck sometimes but for the most part i have nothing to complain about!

Angel