Re: Spina Bifida & DDB vs. AFOs

[Guest guest]

In a message dated 6/12/2006 9:21:14 PM Pacific Standard Time,

d831961@... writes:

> e discussed the fact that sometimes using AFOs is a better choice than

> going the DBB route for Spina Bifida patients.

I have to kids with SB, and they both had AFO's. One is a walker & one is

not.

DeeDee

http://www.deedeeortizphotography.net

California

[Guest guest]

>

> Donna,

> While I don't have experience with SB, I can tell you the reasons

that

> typical AFO's are not usually a part of clubfoot management; it is

> because they do not hold the outward rotation of the foot and if worn

> constantly can lead to muscle atrophy. Neither of which I would

think

> would be desirable in any child, SB or not. There may be reasons

that

> they are used that I'm not aware of with SB, but this is just what I

> know about them.

Hi, !

Children with sb usually get AFOs at some point in their lives,

usually when they become weight bearing. Of course, this does depend

on their lesion level, etc. AFO's provide stability and protection

for kids with sb and are usually used for walking. I believe muscle

atrophy isn't usually a concern. I tell ya, when it comes to sb/cf,

it is a different ball of wax. LOL.. The same yet not the same.

Also, so much of this depends on the child's lesion level and what is

affected. Different levels mean different muscles, different nerves,

different capabilities.

I'm in a bit of a hurry, so I'm having to stop my posting spree. I'll

fill you in later how Grant and Rose are faring.

Joy

[Guest guest]

So Joy, just curious here, since you just negated what I said in my

last post, : ) how does the AFO hold the abduction? And do you worry

about muscle atrophy? Your input is greatly appreciated.

Thanks,

> >

> > Had our 3 week old son, , at the Dr. today for his second set

> >of casts. His feet have moved an incredible amount! Today he also

> >had a bar attached between his casts in order to keep his

> >dislocated hips in place. The Dr. was talking with me about the

> >difference in results of the Ponseti method with Spina Bifida kids

> >compared to the general public. He talked about how he could most

> >likely do the tendon cut without numbing because of the lack of

> >sensation, but that he'd check carefully for sensation before doing

> >that.

>

> Congratulations, Donna, on the birth of !! I bet he's

> marvelous!! How have things been going? Did he get a shunt?

>

> When Grant had his tendons cut, they did numb the area. The

> procedure was also done in the OR because Grant's doctor wanted a

> sterile environment.

>

>

> >He discussed the fact that sometimes using AFOs is a better choice

> >than going the DBB route for Spina Bifida patients. This was based

> >on the fact that later he may need extensive bracing in order to

> >walk and the braces will give the support that's needed and is

> >acheived by the DBB results. I'm expecting my son to grow to use a

> >wheelchair because of choice (because of the extreme effort it may

> >take for him to walk), if not of neccessity. I can't remember

> >everything the Dr. said, but at the time we were talking, it made

> >sense to me. Why go the DBB route and spend so much time in them

> >when thay may not produce the expected results? The little I know

> >about AFOs makes them a more attractive choice because of ease of

> >use. Does this make sense to anyone else who's a Spina Bifida

> >parent? What has been the experiences of other SB parents? Did

> >your Dr. go strictly the Ponseti route, or a modification of it?

> >What was the reasoning? How did it turn out?

>

>

> We are using AFOs. I had a really, really, really hard time with

> this at first because of following the protocol with Rose, but I'm

> seeing the why now. The AFOs do make sense for a baby with sb

> because of the muscular imbalance. The ortho said that sb babies

> legs very seldom " mirror " each other. Grant's left leg has much

> better knee, hip extension than his right, and he's able to exercise

> both his legs with the AFOs on. i believe the FAB would inhibit the

> range of motion. I don't think an FAB would harm, but I don't know

> that it would help, if that makes sense?

>

> I've asked this question on the sb forum, and I know there is one

> parent whose child is treated by Dr. Dobbs. She's in the Dobbs

> brace from my understanding. Otherwise, I've mostly seen parents

> speak of the AFOs.

>

> As for how it turned out, well, we're still finding out. Grant

> is 8 1/2 months, and I think we'll be doing more casting in the

> future. His left foot has been stiff and resistant, and I won't be

> surprised if he needs surgery. I hope to avoid it, though! Right

> now, he's not weight bearing, and I think once he is, it will also

> help his feet.

>

> The one thing I had a really hard time accepting is we're not

> dealing with clubfeet. We're dealing with spina bifida. There is a

> difference, and it makes for some changes in treatment.

>

> > Thanks for the help. Isn't the internet the best way to educate

> >yourself? I love it!

>

> Sometimes I think I'm an addict. I hope little is doing

> well! Is he fitting right in?

>

> Joy

> http://www.caringbridge.org/visit/grantphilip

>

[Guest guest]

sam may also require some sort of hip surgery later, but that would

be to correct the external rotation that he has. the problem withi

relocating hips, i am told, is that sb kids dont have the musculature

to hold the bones place, even with casts, and so the sockets will

most likely never form.

i once asked my doc if the fact that sam doesnt have s.b. was a

distinction without a difference. the answer has been yes and no.

the mobility and bowel/bladder issues are just like s.b., although

sam does seem to hve some sensation on the bottoms of his feet (but

not in his legs). he can use his quads but cant feel them. he is

basically around L2-L3 functionality. the main difference between

what sam has and sb is no hydro, no chiari, etc. brain is totally

fine.

one of the many great things about living in nyc is that world-class

medical care is a short walk or a taxi ride away...

> >

> > donna,

> > my son, 3, doesnt have s.b. but a condition which is similar in

> many

> > respects. he is largely paralyzed below his waist and has (had?)

> > bilateral clubfeet. we are being treated by dr. scher in nyc.

we

> > did the regular ponseti thing and went with the dbb at night and

> > afo's in the day, and we are still doing that. scher has been

> pretty

> > pragmatic about the efficacy of the nortmal ponseti routine for

> sam -

> > since the usual outcome is not in doubt (will not happen) then

> being

> > dogmatic about the procedure is not necessarily required.

> > nevertheless, he feels that continuing with the dbb until sam is

> 4,

> > as long as sam tolerates it, cant hurt, might help, so why not.

> if

> > sam did not tolerate the bar, then im sure scher would say its ok

> to

> > stop. he uses a very common sense approach to this situation and

> i

> > think you can trust your instincts here.

>

> Hi, Billy,

> I kind of like that approach of the DBB at night, AFOs during the

> day. We are just doing afos.

>

> > one other thint that you mentioned was about jacob's hips. sam

> also

> > has bilaterally dislocated hips (also common for s.b. kids). i

> have

> > been told by several orthopaedic experts who specialize in s.b.

> (most

> > impressive was lou dias in chicago) that trying to relocate the

> hips

> > is a lost cause and the hips can stay dislocated forever without

> any

> > loss of motion etc. only consequence is abnormal walking gait.

> if

> > you are talking about walking with braces/walker and wheels (like

> > us), then abnormal gait doesnt matter.

>

> Oh, yes, I forgot to remark on that all. Grant's ortho has also

> said he's holding off doing anything with the hip dysplasia. He

has

> three criteria we assess: 1. Symmetry 3. Freedom from pain , and

I

> can't remember the third, sorry!

>

> If surgery is considered, there are definitely questions to ask.

> Will the surgery correct? Will it cause pain? What will it

> accomplish?

>

> Dislocated hips aren't necessarily problematic in an sb kid.

>

> > feel free to email offline also if you want to discuss more about

> > sb/nonstandard clubfoot/or other issues.

>

> Bill, it amazes me the similarites Sam has to SB. It sounds like

> you have some fabulous doctors, too.

>

> Joy

>

[Guest guest]

My dd has sb at L5. Dr. Dobbs has treated her clubfoot. The Dobbs

brace has worked great except when blistering became a problem.It is

the exception as far as I know. I was there to get a repeat cast off

of Lilly today. Lilly is 18 months old. She was out of the brace for

various reasons but after a week of a cast, she is back to the brace.

We are crossing our fingers that there will be no blisters. The afos

are nice because she wears afos during the day without the bar and the

brace at night.

[Guest guest]

allison,

at least in sam's case: the afo's dont hold the abduction at all, as

you say. but again, the point in sb (with higher lesions) is only to

get the foot flat - its going to be braced to the ankle and maybe the

knee so its immovable anyway. also, again in sam's case but i assume

its true in most sb cases too, the imbalanced nature of the

musculature doesnt allow for the abduction to be maintained. (just

like the imbalanced muscles dont particularly allow for (at least

sam's) foot to be maintained in a corrected position. (sam's foot is

flexible enough so that its flat when in the afo and so he can

stand/walk with walker)...

worry about the muscle atrophy? sure i worry, but nothing to do. he

has no voluntary muscle control so it will atrophy and cannot be

prevented.

> > >

> > > Had our 3 week old son, , at the Dr. today for his second

set

> > >of casts. His feet have moved an incredible amount! Today he

also

> > >had a bar attached between his casts in order to keep his

> > >dislocated hips in place. The Dr. was talking with me about the

> > >difference in results of the Ponseti method with Spina Bifida

kids

> > >compared to the general public. He talked about how he could

most

> > >likely do the tendon cut without numbing because of the lack of

> > >sensation, but that he'd check carefully for sensation before

doing

> > >that.

> >

> > Congratulations, Donna, on the birth of !! I bet he's

> > marvelous!! How have things been going? Did he get a shunt?

> >

> > When Grant had his tendons cut, they did numb the area. The

> > procedure was also done in the OR because Grant's doctor wanted a

> > sterile environment.

> >

> >

> > >He discussed the fact that sometimes using AFOs is a better

choice

> > >than going the DBB route for Spina Bifida patients. This was

based

> > >on the fact that later he may need extensive bracing in order to

> > >walk and the braces will give the support that's needed and is

> > >acheived by the DBB results. I'm expecting my son to grow to

use a

> > >wheelchair because of choice (because of the extreme effort it

may

> > >take for him to walk), if not of neccessity. I can't remember

> > >everything the Dr. said, but at the time we were talking, it

made

> > >sense to me. Why go the DBB route and spend so much time in

them

> > >when thay may not produce the expected results? The little I

know

> > >about AFOs makes them a more attractive choice because of ease

of

> > >use. Does this make sense to anyone else who's a Spina Bifida

> > >parent? What has been the experiences of other SB parents? Did

> > >your Dr. go strictly the Ponseti route, or a modification of

it?

> > >What was the reasoning? How did it turn out?

> >

> >

> > We are using AFOs. I had a really, really, really hard time with

> > this at first because of following the protocol with Rose, but

I'm

> > seeing the why now. The AFOs do make sense for a baby with sb

> > because of the muscular imbalance. The ortho said that sb babies

> > legs very seldom " mirror " each other. Grant's left leg has much

> > better knee, hip extension than his right, and he's able to

exercise

> > both his legs with the AFOs on. i believe the FAB would inhibit

the

> > range of motion. I don't think an FAB would harm, but I don't

know

> > that it would help, if that makes sense?

> >

> > I've asked this question on the sb forum, and I know there is one

> > parent whose child is treated by Dr. Dobbs. She's in the Dobbs

> > brace from my understanding. Otherwise, I've mostly seen parents

> > speak of the AFOs.

> >

> > As for how it turned out, well, we're still finding out.

Grant

> > is 8 1/2 months, and I think we'll be doing more casting in the

> > future. His left foot has been stiff and resistant, and I won't

be

> > surprised if he needs surgery. I hope to avoid it, though!

Right

> > now, he's not weight bearing, and I think once he is, it will

also

> > help his feet.

> >

> > The one thing I had a really hard time accepting is we're not

> > dealing with clubfeet. We're dealing with spina bifida. There

is a

> > difference, and it makes for some changes in treatment.

> >

> > > Thanks for the help. Isn't the internet the best way to

educate

> > >yourself? I love it!

> >

> > Sometimes I think I'm an addict. I hope little is doing

> > well! Is he fitting right in?

> >

> > Joy

> > http://www.caringbridge.org/visit/grantphilip

> >

>

[Guest guest]

Thanks for all the replys to my post. Your general opinion and experiences

matched what the ortho was explaining to me on Monday. It had made sense to me

then, but I had trouble explaining it to my husband later at home. Just

couldn't remember all that had been said during that visit. Your emails

explained it well and he understood.

Joy, has been welcomed into the family and fits in well. He's a little

trooper and bounces back fast from each trauma he has to endure (3 surgeries by

two weeks old, plus casting of both legs). We love him!

Donna