AFOs

December 31, 2004

Could someone please give me a brief explanation about how AFOs work? My 6yr old son will get his next week. I have heard of them as being a "muscle on the outside" of the leg to give them a little extra support.

Also, will I need to buy him a pair of shoes that is one size larger than normal?

Thanks for your help.

e *Ü*

December 31, 2004

Could someone please give me a brief explanation about how AFOs work? My 6yr old son will get his next week. I have heard of them as being a "muscle on the outside" of the leg to give them a little extra support.

Also, will I need to buy him a pair of shoes that is one size larger than normal?

Thanks for your help.

e *Ü*

December 31, 2004

On the shoes, I would really suggest you wait until after you get his AFO's

cause it can vary from shoe to shoe, but often you will need 2-2 1/2 sizes

larger even! The AFO's can work in different ways according to the need of

the child. They can give support to weakened ankles, keep the feet from

turning in or out (unless the problem is also in the hips), keeps the child

from going up on tiptoes, makes sure his heals will hit the ground, etc. We

used DAFO's (which go up to the knees for two years and then switched to

AFO's this year for Asenath and Zipporrah also wears the AFO's. They are

very discrete and hardly noticeable especially if you buy longer socks that

can be folded down over the top Velcro of the brace. I like folding the

sock down not really to hide them, but to keep the Velcro from snagging on

carpet and other surfaces Velcro sticks to. That way they stay on well with

a firm hold. The shoes will keep the lower Velcro's in place. Another

thing to do with the shoes is that you will need to buy either very wide and

loose fitting (width wise) shoes with laces OR buy Velcro shoes and purchase

extra Velcro to sew onto the shoes to add more length to be able to fit over

and around the brace to reach the Velcro attachment area. It can be hard to

sew on and you might want to ask the people who make the braces to see if

they can sew it with their heavy duty sewing machines for you. This time

around rather than get shoes and work with them, I just bought the shoes the

brace company offers. Medicaid and Insurance paid for them so we didn't

have to worry about the cost. I am sure store bought is much cheaper though

if you have to pay it yourself. Hope some of this helps you.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

AFOs

Could someone please give me a brief explanation about how AFOs work? My 6yr

old son will get his next week. I have heard of them as being a " muscle on

the outside " of the leg to give them a little extra support.

Also, will I need to buy him a pair of shoes that is one size larger than

normal?

Thanks for your help.

e *Ü*

December 31, 2004

e,

What type of AFOs are you getting? Are you going to be fitted for them or

picking them up? Our has hinged AFOs that go to the knees. We hope

that the next time she gets them she will only have to wear the ones that go to

the ankle. For her, they prevent leg pain. She is tight, especially on her left

side. AFOs prevent her from toe walking. This decreases the spasticity in her

legs and helps prevent pain.

Our wears DAFO 2.

http://www.dafo.com/

products.asp_Q_pagenumber_E_157_A_dirid_E_18_A_subnavid_E_26

December 31, 2004

Thank you Darla. That was alot of helpful information! I'm glad I read about not buying the shoes before the AFOs because I was on my way in to town to get a new pair of Shaq shoes for Devin, one size larger! Thanks for saving me some bucks!!

e *Ü*

Re: AFOs

On the shoes, I would really suggest you wait until after you get his AFO's cause it can vary from shoe to shoe, but often you will need 2-2 1/2 sizes larger even! The AFO's can work in different ways according to the need of the child. They can give support to weakened ankles, keep the feet from turning in or out (unless the problem is also in the hips), keeps the child from going up on tiptoes, makes sure his heals will hit the ground, etc. We used DAFO's (which go up to the knees for two years and then switched to AFO's this year for Asenath and Zipporrah also wears the AFO's. They are very discrete and hardly noticeable especially if you buy longer socks that can be folded down over the top Velcro of the brace. I like folding the sock down not really to hide them, but to keep the Velcro from snagging on carpet and other surfaces Velcro sticks to. That way they stay on well with a firm hold. The shoes will keep the lower Velcro's in place. Another thing to do with the shoes is that you will need to buy either very wide and loose fitting (width wise) shoes with laces OR buy Velcro shoes and purchase extra Velcro to sew onto the shoes to add more length to be able to fit over and around the brace to reach the Velcro attachment area. It can be hard to sew on and you might want to ask the people who make the braces to see if they can sew it with their heavy duty sewing machines for you. This time around rather than get shoes and work with them, I just bought the shoes the brace company offers. Medicaid and Insurance paid for them so we didn't have to worry about the cost. I am sure store bought is much cheaper though if you have to pay it yourself. Hope some of this helps you. :)See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms)

December 31, 2004

Dear ,

Devin had a mold made of his legs a few weeks back, then the orthopedist is making them for him, and we'll pick them up on Jan 6th. I think that's how it will go anyway. They will be hinged at the ankle, and go to just below the knee. Devin is tight also, in the ankles with very little rotation, and his hamstrings are very tight. We have to do a home stretching program twice a day for him. He also toe walks and runs.

Back in early December Devin started doing serial casting with his PT. The purpose was to stretch his hamstrings, and loosen them up a bit. We discussed Botox injections, but ruled that out, since he isn't severly spastic. After the first set of casts was taken off after only one week, he could barely walk. We were walking him around the halls of the therapist's office, and he just kept crying, saying how much it hurt, and collapsing to the floor. They didn't expect that reaction from him at all! The casts significantly weakened his legs, so we suspended the casting immediately. It took at least three weeks to get his legs back to where they were before. Now his ankles seem tighter and stiffer than before, but part of that is him resisting earlier during the stretching than he did before.

I don't know what to think about all this. I just hope these AFOs will help him be able to stay walking longer during the day. I'd like to at least make one shopping trip without having to have him laying all over the floor from his legs being so weak! Thankfully he's tiny, so he can still fit in those carts where two children can ride together. When they aren't available, I have to use his stroller, and that's a nightmare because his autistic twin has to either push him or the cart through crowds of people. It's not a good scene when he's too busy noticing the toys and bright colorful things that catch his eye in every aisle, and running into people! Oh what a mess!! *Ü*

Thanks for you help. I do appreciate it.

e *Ü*

Re: AFOs

e,What type of AFOs are you getting? Are you going to be fitted for them or picking them up? Our has hinged AFOs that go to the knees. We hope that the next time she gets them she will only have to wear the ones that go to the ankle. For her, they prevent leg pain. She is tight, especially on her left side. AFOs prevent her from toe walking. This decreases the spasticity in her legs and helps prevent pain. Our wears DAFO 2.http://www.dafo.com/products.asp_Q_pagenumber_E_157_A_dirid_E_18_A_subnavid_E_26

December 31, 2004

Did the ortho call the braces he is getting AFO's? It sounds like hinged

DAFO's to me. Asenath had one hinged and one non-hinged pair of DAFO's and

they were nicer than her current AFO's. I really liked the extra support

the legs received from the full length version. Hope they will be able to

help your son with some of his problems. The casting sounds like it might

have caused some issues and lots of pain.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: AFOs

e,

What type of AFOs are you getting? Are you going to be fitted for them or

picking them up? Our has hinged AFOs that go to the knees. We hope

that the next time she gets them she will only have to wear the ones that

go to

the ankle. For her, they prevent leg pain. She is tight, especially on her

left

side. AFOs prevent her from toe walking. This decreases the spasticity in

her

legs and helps prevent pain.

Our wears DAFO 2.

http://www.dafo.com/

products.asp_Q_pagenumber_E_157_A_dirid_E_18_A_subnavid_E_26

Please contact mito-owner with any problems or questions.

December 31, 2004

was fitted for hinged DAFO's 3 weeks ago, and we also pick

ours up on January 6th! lol!!

as such I dont know alot about them, as we are just as new to this

as you, but the purpose of s are to straiten his feet out,

keep him from scrunching them up and dragging them, and to

strengthen the ankles, and hopefully reduce the pain he gets in his

legs.

he gets tight when hes sick, but the rest of the time, its almost

like his ankles are actually floppy... he will 'roll' his ankles

frequently, and alot of times his legs will just give out under

him... the 'brace builder person' (lol! cant remember what hes

called) explained that the braces would hopefully help him not to

roll his ankles so much, and hopefully build up a bit of his own

strength...

I hope we both have positive experiences with them!

Keely (mom to , 2 years, suspected mito, awaiting biopsy

results)

> Did the ortho call the braces he is getting AFO's? It sounds like

hinged

> DAFO's to me. Asenath had one hinged and one non-hinged pair of

DAFO's and

> they were nicer than her current AFO's. I really liked the extra

support

> the legs received from the full length version. Hope they will be

able to

> help your son with some of his problems. The casting sounds like

it might

> have caused some issues and lots of pain.

>

> See www.caringbridge.org/ia/mitomomof9 and this link to see a real

look into

> Mito using a photo collage of my girls at www.heartbeatsformito.org

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic

vomiting...

> Zipporrah (12 months) Mito, strokes, neuro-motor planning

dysfunction, SID,

> GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian

artery,

> disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping

> syndrome, iron deficiency...

> Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia

(3), &

> Marquis (2) (some with Mito symptoms)

>

> Re: AFOs

>

> e,

>

> What type of AFOs are you getting? Are you going to be fitted

for them or

> picking them up? Our has hinged AFOs that go to the

knees. We hope

> that the next time she gets them she will only have to wear the

ones that

> go to

> the ankle. For her, they prevent leg pain. She is tight,

especially on her

> left

> side. AFOs prevent her from toe walking. This decreases the

spasticity in

> her

> legs and helps prevent pain.

>

> Our wears DAFO 2.

> http://www.dafo.com/

> products.asp_Q_pagenumber_E_157_A_dirid_E_18_A_subnavid_E_26

>

> Please contact mito-owner with any problems or

questions.

>

December 31, 2004

Oh Keely, how funny that we'll both be going through this for the first time together on the very same day! *Ü* I think by looking at the link to the DAFOs that sent, and the description that Darla gave of them, I'm almost sure that's what Devin is getting. I'm hoping for good results for our boys too! We'll have to keep eachother updated, ok?

Happy New Year!

e *Ü*

Re: AFOs

was fitted for hinged DAFO's 3 weeks ago, and we also pick ours up on January 6th! lol!! as such I dont know alot about them, as we are just as new to this as you, but the purpose of s are to straiten his feet out, keep him from scrunching them up and dragging them, and to strengthen the ankles, and hopefully reduce the pain he gets in his legs. he gets tight when hes sick, but the rest of the time, its almost like his ankles are actually floppy... he will 'roll' his ankles frequently, and alot of times his legs will just give out under him... the 'brace builder person' (lol! cant remember what hes called) explained that the braces would hopefully help him not to roll his ankles so much, and hopefully build up a bit of his own strength... I hope we both have positive experiences with them!Keely (mom to , 2 years, suspected mito, awaiting biopsy results)

January 1, 2005

It has seemed to me that different parts of the country refer to these braces with dfferent acronyms. We have always been told that:Hotdogs or something similar are the shoe insertsSMO's are the braces that just go to the ankleAFO's are the braces that go to just below the knee (can be hinged or not)DAFOs are the braces that go up further than the knee Who knows? Z and S have braces that go to below the knee which we call AFOs Funny how different terms are used by different orthotists and physical therapists. Anne J

January 1, 2005

e,

Billy had AFOs for a while. They were supposed to help support his

ankles and basically make the foot/leg into one unit. (Couldn't wear

them for long as his feet kept turning in anyway and they caused wear

spots and sores. They adjusted as much as they could and then said he

would have to have surgery)

You can buy a shoe usually from the same place you get the AFO's that

don't have a left or right orientation. This was the easiest to put

on. Otherwise a slightly larger shoe which opens up very wide. We

also used knee high socks that we got from the mountain man/black

powder get togethers. If you use a regular cotton crew sock the AFO

fits too tight. When they make the cast for the foot that the AFO is

made from you can get a look at how thick the " sock " is. You can't go

much thicker than that.

Good luck with it.

Twana

AFOs

> Also, will I need to buy him a pair of shoes that is one size larger

than normal?

January 1, 2005

> DAFOs are the braces that go up further than the knee

DAFO is a brand name=Dynamic Ankle Foot Orthotic

January 2, 2005

Sorry I caused confusion there. I seem to remember Asenath's being called

DAFO's, but they only went up to the knee so I guess I was either

misinformed or not hearing correctly for two years. They must have been

AFO's before and she must have SMO's now. ???!

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: AFOs

>

> > DAFOs are the braces that go up further than the knee

>

> DAFO is a brand name=Dynamic Ankle Foot Orthotic

>

> Please contact mito-owner with any problems or questions.

>

January 2, 2005

Hi there Darla,

Joe uses DAFO's (which go to just below his knees) and

SMO's (which only go just above the ankles) these

are the cascade brand. I don't know if different brand

brace makers call them something different. I think you

were correct if that is what you are using on your kids.

Hope this helps.

AnnMarie L. - Complex IV

Married to my best friend Rick,

Mom of (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

honeybear50317@... wrote:

Sorry I caused confusion there. I seem to remember Asenath's being

called

DAFO's, but they only went up to the knee so I guess I was either

misinformed or not hearing correctly for two years. They must have

been

AFO's before and she must have SMO's now. ???!

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look

into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla

Re: AFOs

>

> > DAFOs are the braces that go up further than the knee

>

> DAFO is a brand name=Dynamic Ankle Foot Orthotic

>

January 2, 2005

Hi there Darla,

Joe uses DAFO's (which go to just below his knees) and

SMO's (which only go just above the ankles) these

are the cascade brand. I don't know if different brand

brace makers call them something different. I think you

were correct if that is what you are using on your kids.

Hope this helps.

AnnMarie L. - Complex IV

Married to my best friend Rick,

Mom of (15), (12), Cassandra (6) and

Joe (5) - complex IV, lactic acidosis, CP,

tethered chord syndrome, dysautonomia, and

a smile that never quits :-)

honeybear50317@... wrote:

Sorry I caused confusion there. I seem to remember Asenath's being

called

DAFO's, but they only went up to the knee so I guess I was either

misinformed or not hearing correctly for two years. They must have

been

AFO's before and she must have SMO's now. ???!

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look

into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla

Re: AFOs

>

> > DAFOs are the braces that go up further than the knee

>

> DAFO is a brand name=Dynamic Ankle Foot Orthotic

>

January 2, 2005

Hi e:

My daughter, Leah, uses AFO's. They go up around the back of her leg. It

is a hard piece of plastic and it supports her ankles so they don't turn

out. She doesn't walk at all, but we use them at school to support her legs

better and ankles so she doesn't have to work to much in standing. Yes,

you take the AFO's with you to try on shoes. They suggest a wider shoe and

also bigger shoe. Because you take out the insole so the AFO fits better.

And we use knee socks with Leah's AFO's so they can turn down at the top

and offer a little more comfort for her legs. We find they help her a lot

even though she doesn't walk.

Nerenhausen

mom to Leah

e wrote:

Could someone please

give me a brief explanation about how AFOs work? My 6yr old son will get

his next week. I have heard of them as being a "muscle on the outside" of

the leg to give them a little extra support.

Also, will I need to

buy him a pair of shoes that is one size larger than normal?

Thanks for your help.

e *Ü*

Please contact mito-owner with any problems or questions.

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