Re: New here with questions

[Guest guest]

--- dizzydeb0130 wrote:

> My daughter is 16 months old and has spina bifida and unilateral club

> foot. She has been seen by Dr. Dobbs she has been treated with casts

> and brace. She outgrew her first brace and since she got her second

> one, she has been in and out of it and casts because she keeps getting

> blisters on her heels. I am very frustrated and almost ready to

> consider surgery to correct her foot. She is ready to start walking (a

> really big deal for kids with spina bifida) and I hate for anything to

> slow her down. Any thoughts? Can the brace be used while she has

> blisters? Should I consider having her switched to the Dennis Brown

> shoe with the cut out heel?

Hi, Debbie, and welcome!

I have a 6 month old son with spina bifida and bilateral clubfeet. It is

awesome your daughter is already starting to walk!! What was her lesion level?

Grant is L4-L5. May I ask what type of brace she is wearing? Grant is in

AFO's because of the difference in his feet and his hips (and knees, too, I

think).

The sores are probably occuring because her skin is insensate. We were told to

use witch hazel to improve circulation and to massage Grant's feet and legs

frequently. We were also advised NOT to use any lotion on his feet because it

softens the skin and helps the skin to break down. Pressure sores can be very

common on kids with sb.

I'd love to chat with you more. My email is joybelle15 @ yahoo.com (w/o

spaces). I'm also on a group called sbmoms-n-dads that has

been a great resource for me.

Joy

Rose (1-99) http://www.geocities.com/joybelle15/rosesclubfootpage.html

Iris (2-01)

Spencer (3-03)

Grant (9-05) http://www.caringbridge.org/visit/grantphilip

__________________________________________________

[Guest guest]

Debbie,

So what does Dr. Dobbs think is causing the blisters? It's very

unusual in this brace, do you think she is slipping in the shoe/AFO?

Where on her heel is she getting the blisters, up high, like above the

heel bone? Have they tried remolding her to maybe get a better

impression of the foot for the brace? Have you checked her bar

length? This is a common problem as the children grow if the bar is

not long enough it can cause counter pressure that will cause sores.

I am not sure that the holed Markell shoes would solve the problem.

Several people here have been having just the same problems with the

holed shoes as what you're experiencing now because the heels are

rubbing on the edge of the hole. If you wanted to try the Markells I

would go for the regular ones and if you feel you need a hole to see

her heels just cut a small peek hole (pinky size) so you can see if

the heel is down. My son is also a patient of Dr. Dobbs and we have

used both the AFO shoes and the Markells. We are currently using the

Markells with no problems. You could also consider the

Ponseti/ shoes which are more expensive but often able to be

covered by insurance. Have you seen them? Check them out here:

http://www.mdorthopaedics.com/pages/1/index.htm

I wouldn't necessarily be thinking surgery, we just need to figure out

what is causing the problem and fix it! That's what we do here, so

just hang in there and we will help you get through this.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

>

> My daughter is 16 months old and has spina bifida and unilateral club

> foot. She has been seen by Dr. Dobbs she has been treated with casts

> and brace. She outgrew her first brace and since she got her second

> one, she has been in and out of it and casts because she keeps getting

> blisters on her heels. I am very frustrated and almost ready to

> consider surgery to correct her foot. She is ready to start walking (a

> really big deal for kids with spina bifida) and I hate for anything to

> slow her down. Any thoughts? Can the brace be used while she has

> blisters? Should I consider having her switched to the Dennis Brown

> shoe with the cut out heel?

>

> TIA

> Debbie and Lilly

>

[Guest guest]

To be honest, Dr. Dobbs does not seem to have time to address the

problem. I have tried to get an appointment and his last clinic day

at Children's had 52 patients booked. He has been in and out of the

country as well. I would be happy to have another doctor look at her

but they do not seem to allow that as an option. I am also in the

process of getting Lilly switched to Shriner's, I do not know if

that is causing a problem with scheduling or not.

Last time she had a blister, the brace was modified and I was

repeatedly instructed on its use. I put her feet in there all the

way, I mark where it is supposed to be fastened and even where her

toes reach the end of the AFO, she still gets blisters. I bought

special AFO socks. I have 5 other children and one of them is a

newborn. I do not have time to go to and the orthotics lab on

the other side of the building with 4 kids through a yucky hospital

( under construction) every week to get her brace refitted.

Everytime I tell little Dave that I think she needs to have new

ones, he tells me that since her toes are not hanging off the front,

she does not need new ones yet. Since she got the current brace, her

heel has developed more, probably due to her doing more weight

bearing. Her heels are much rounder than they were when this brace

was made. Little Dave and Dave have both 'tweeked' the heel area

with no success. They have even worked on it on days that I took my

son in to orthopedic surgery for his broken arm. keeps 're-

instructing' me on the use of the brace. I cannot seem to get them

to understand that I am doing everything they tell me to. Lilly

bangs her brace. She gets blisters on the rounded part of her heel--

big yucky water blisters. She does not feel any pain from banging

her brace so she will not stop.

She is in the brace with the newest bar--the one that limits how

much she can move it. This was supposed to help with slipping. Also,

the inserts were fit with velcro straps to keep them from slipping.

Lilly turns her knee inward to slide her foot up. Since the most

recent modifications, she just turns her knee in but does not manage

to get her foot up and out of the brace. Dr. Dobbs is also supposed

to be following her for the SB issues but has not addressed any

other SB orthopedic problems. I do not have time for a doctor that

does not have time for my child. I also do not have time to listen

to doctors and nurses blame me for brace problems that are not my

fault, I do every thing as instructed and she still ends up with

blisters.

Sorry, I am very very frustrated.

>

> Debbie,

> So what does Dr. Dobbs think is causing the blisters? It's very

> unusual in this brace, do you think she is slipping in the

shoe/AFO?

> Where on her heel is she getting the blisters, up high, like above

the

> heel bone? Have they tried remolding her to maybe get a better

> impression of the foot for the brace? Have you checked her bar

> length? This is a common problem as the children grow if the bar

is

> not long enough it can cause counter pressure that will cause

sores.

> I am not sure that the holed Markell shoes would solve the

problem.

> Several people here have been having just the same problems with

the

> holed shoes as what you're experiencing now because the heels are

> rubbing on the edge of the hole. If you wanted to try the

Markells I

> would go for the regular ones and if you feel you need a hole to

see

> her heels just cut a small peek hole (pinky size) so you can see if

> the heel is down. My son is also a patient of Dr. Dobbs and we

have

> used both the AFO shoes and the Markells. We are currently using

the

> Markells with no problems. You could also consider the

> Ponseti/ shoes which are more expensive but often able to

be

> covered by insurance. Have you seen them? Check them out here:

> http://www.mdorthopaedics.com/pages/1/index.htm

> I wouldn't necessarily be thinking surgery, we just need to figure

out

> what is causing the problem and fix it! That's what we do here, so

> just hang in there and we will help you get through this.

>

>

> Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

14hrs/day)

>

>

>

[Guest guest]

Debbie,

I'm really sorry that you are having these problems. I know it is

very difficult since Dr. Dobbs has been gone a lot and I can

appreciate your frustration. With your permission, I would like to

pass on your comments to him personally to see if we can get this

addressed. I'm sure he will be distressed to know that you are

feeling this way.

Also, since the blisters are on the rounded part of her heel and not

on the back of her heel, I wonder if the regular Markell shoes would

work for you, I think they might eliminate the slipping if you are

able to get them on nice and tight. And again, the P/M's might be an

option if nothing else is working. I definitely feel for you and can

sympathize. I'll try to help you the best I can.

Hang in there!

> >

> > Debbie,

> > So what does Dr. Dobbs think is causing the blisters? It's very

> > unusual in this brace, do you think she is slipping in the

> shoe/AFO?

> > Where on her heel is she getting the blisters, up high, like above

> the

> > heel bone? Have they tried remolding her to maybe get a better

> > impression of the foot for the brace? Have you checked her bar

> > length? This is a common problem as the children grow if the bar

> is

> > not long enough it can cause counter pressure that will cause

> sores.

> > I am not sure that the holed Markell shoes would solve the

> problem.

> > Several people here have been having just the same problems with

> the

> > holed shoes as what you're experiencing now because the heels are

> > rubbing on the edge of the hole. If you wanted to try the

> Markells I

> > would go for the regular ones and if you feel you need a hole to

> see

> > her heels just cut a small peek hole (pinky size) so you can see if

> > the heel is down. My son is also a patient of Dr. Dobbs and we

> have

> > used both the AFO shoes and the Markells. We are currently using

> the

> > Markells with no problems. You could also consider the

> > Ponseti/ shoes which are more expensive but often able to

> be

> > covered by insurance. Have you seen them? Check them out here:

> > http://www.mdorthopaedics.com/pages/1/index.htm

> > I wouldn't necessarily be thinking surgery, we just need to figure

> out

> > what is causing the problem and fix it! That's what we do here, so

> > just hang in there and we will help you get through this.

> >

> >

> > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

> 14hrs/day)

> >

> >

> >

>

[Guest guest]

Hi and welcome to the group! I don't have much time right now so I'll

write quickly, the Markells are the white lace up open toed-shoes, if

they are applied correctly we should be able to help you keep them on.

The P/M's are the same thing as Ponseti/'s or 's.

They are a sandal like shoe, look kind of like a birkenstock - you can

see their website here: http://www.mdorthopaedics.com/

I gotta run right now, but rest assured we can help you figure this

out whether it means switching shoes or not.

Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-14hrs/day)

> > >

> > > Debbie,

> > > So what does Dr. Dobbs think is causing the blisters? It's very

> > > unusual in this brace, do you think she is slipping in the

> > shoe/AFO?

> > > Where on her heel is she getting the blisters, up high, like above

> > the

> > > heel bone? Have they tried remolding her to maybe get a better

> > > impression of the foot for the brace? Have you checked her bar

> > > length? This is a common problem as the children grow if the bar

> > is

> > > not long enough it can cause counter pressure that will cause

> > sores.

> > > I am not sure that the holed Markell shoes would solve the

> > problem.

> > > Several people here have been having just the same problems with

> > the

> > > holed shoes as what you're experiencing now because the heels are

> > > rubbing on the edge of the hole. If you wanted to try the

> > Markells I

> > > would go for the regular ones and if you feel you need a hole to

> > see

> > > her heels just cut a small peek hole (pinky size) so you can see if

> > > the heel is down. My son is also a patient of Dr. Dobbs and we

> > have

> > > used both the AFO shoes and the Markells. We are currently using

> > the

> > > Markells with no problems. You could also consider the

> > > Ponseti/ shoes which are more expensive but often able to

> > be

> > > covered by insurance. Have you seen them? Check them out here:

> > > http://www.mdorthopaedics.com/pages/1/index.htm

> > > I wouldn't necessarily be thinking surgery, we just need to figure

> > out

> > > what is causing the problem and fix it! That's what we do here, so

> > > just hang in there and we will help you get through this.

> > >

> > >

> > > Mom to Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs' brace, 12-

> > 14hrs/day)

> > >

> > >

> > >

> >

>

>

>

>

>

>

>

>