Re: Re: Looking for a Doctor

[Guest guest]

<<<<Can you give us a bit more information on the patient in question? Is

it a newborn or an older child? Do you need a doctor who can do

initial correction or address a relapse?>>>>

We're adopting a baby due to be born in May and he has already been found to

have bilateral clubfeet, hydrocephalus, and Spina Bifida. I'm trying to line

things up. I have a little experience with an ortho doctor in Mobile that I'd

planned on using, but I don't know if he does the Ponseti method. We already

have a neurosurgeon lined up.

Donna

[Guest guest]

Thank you all for the words of advice. I very much appreciate you sharing your

thoughts and experiences. Someone mentioned that having Spina Bifida along with

the clubfeet might bring up more issues or more difficulties (don't remember the

exact wording that was used), but I don't understand what that would be. As far

as traveling long distances, it's having 6 other children of whom one is also

special needs, that makes traveling several hours or staying for weeks at a

Mc house something that seems almost impossible. Traveling several

hours one way would be totally possible, but not when it'd have to happen weekly

for several weeks. I do take to heart that at least one person on this list

told me that taking their child to a Dr. who did the method but wasn't certified

resulted in them taking that child to Ponseti for correction. It's a lot to

think about and I'm spending a lot of time doing that. I'd like to have a plan

in place before the baby is born so that I don't make a mistake by letting a Dr.

I don't really want to use begin to work on and then have to transfer to a

different Dr. If I refuse the services of the ortho that I'm expected to use

here locally, I feel I need to be able to explain to the Ped. my reasoning and

my plan for treatment. Will they give me trouble or pressure if I refuse

treatment for the clubfeet (because I want to take him elsewhere) but eagerly

accept treatment for the Spina Bifida and Hydrocephalus? Are there books that

you know of that I should read about clubfeet?

Donna

[Guest guest]

Wow, I so wish you lived closer to Orlando, FL. I know we have a ponseti

certified dr. here, and several other qualified dr.s that work with him, but

they also treat spina bifida. It would be so awesome if you could receive great

care from the same dr. for all the issues. We didn't deal with spina bifida, but

we did deal with multiple orthopedic issues and other issues. All told, my

daughter has, besides her pediatrician, 5 other specialists she sees, oh and we

just started w/speech therapy since she has oral sensory issues. So I totally

know how overwhelming this can be. It is important that you find a qualified dr.

though, because if you don't do it the first time, you'll have to do it later so

it will only save you time in the long run. I would strongly recommend you at

least send dr. Ponseti an e-mail and find out if there are any differences in

initial treatment/bracing for a baby with these other issues. Remember, you can

always wait a short time to treat clubfoot. It doesn't have to be done the first

week or two. It can wait months. Ideally it's started as soon as possible, but

sounds like you'll have other issues to deal with so pace yourself. Deal with

the most important stuff first. It would make sense to try to get a handle on

the clubfoot treatment sometime in the first 6 months, but if you have to choose

between earlier and a non-qualified dr. and later with a qualified one, go with

later. You'll just save yourself stress and heartache.

Is there anyone who could watch the other kids for you for a few weeks? Maybe a

relative or several? Friends? I know it's probably hard to find one person who'd

take all of them (I say this because I only have 3 and it's hard to find someone

who wants to watch all of them), but maybe you could split them up. I cannot

imagine driving that distance or staying away from home for so long with all of

them. I really hope you can work something out. It will totally be worth it!

E-mail me offlist if you want. Maybe we can brainstorm and come up w/some ideas!

Good luck and hugs to you!

Marcia

Re: Re: Looking for a Doctor

Thank you all for the words of advice. I very much appreciate you sharing

your thoughts and experiences. Someone mentioned that having Spina Bifida along

with the clubfeet might bring up more issues or more difficulties (don't

remember the exact wording that was used), but I don't understand what that

would be. As far as traveling long distances, it's having 6 other children of

whom one is also special needs, that makes traveling several hours or staying

for weeks at a Mc house something that seems almost impossible.

Traveling several hours one way would be totally possible, but not when it'd

have to happen weekly for several weeks. I do take to heart that at least one

person on this list told me that taking their child to a Dr. who did the method

but wasn't certified resulted in them taking that child to Ponseti for

correction. It's a lot to think about and I'm spending a lot of time doing

that. I'd like to have a plan in place before the baby is born so that I don't

make a mistake by letting a Dr. I don't really want to use begin to work on

and then have to transfer to a different Dr. If I refuse the services of

the ortho that I'm expected to use here locally, I feel I need to be able to

explain to the Ped. my reasoning and my plan for treatment. Will they give me

trouble or pressure if I refuse treatment for the clubfeet (because I want to

take him elsewhere) but eagerly accept treatment for the Spina Bifida and

Hydrocephalus? Are there books that you know of that I should read about

clubfeet?

Donna

[Guest guest]

Donna, I'm sorry I can't help you on the other issues, but I can say that as far

as " explaining " your reasoning to the pediatrician - it's really not necessary.

I only met my son's pediatrician the day after my son was born (we had switched

peds due to insurance reasons). When the ped saw my son's left clubfoot, he

started formulating the plan of treatment - the first of which was to see an

ortho surgeon. I had known about the foot since ultrasound and had my own plan

(Ponseti method). So I just simply told him that I would be taking my son to an

ortho specialist certified in the Ponseti method for correcting clubfeet. He had

never heard of that method and was doubtful, but I think he could see from my

demeanor that I would not hear of anything else. He must have thought I was

crazy when I told him the specialist was 2 hours away. However, since then, I

have given him a CD with the Ponseti method video, and he has been so interested

in the whole treatment process -

especially seeing how beautiful the foot has turned out WITHOUT surgery. So

don't worry and don't let the ped make you feel pressured for refusing their

treatment. The results will speak for themselves.

Donna Casady wrote: Thank you all for the words of advice.

I very much appreciate you sharing your thoughts and experiences. Someone

mentioned that having Spina Bifida along with the clubfeet might bring up more

issues or more difficulties (don't remember the exact wording that was used),

but I don't understand what that would be. As far as traveling long distances,

it's having 6 other children of whom one is also special needs, that makes

traveling several hours or staying for weeks at a Mc house

something that seems almost impossible. Traveling several hours one way would

be totally possible, but not when it'd have to happen weekly for several weeks.

I do take to heart that at least one person on this list told me that taking

their child to a Dr. who did the method but wasn't certified resulted in them

taking that child to Ponseti for correction. It's a lot to think about and I'm

spending a lot of time doing that. I'd like to have

a plan in place before the baby is born so that I don't make a mistake by

letting a Dr. I don't really want to use begin to work on and then have to

transfer to a different Dr. If I refuse the services of the ortho that I'm

expected to use here locally, I feel I need to be able to explain to the Ped. my

reasoning and my plan for treatment. Will they give me trouble or pressure if I

refuse treatment for the clubfeet (because I want to take him elsewhere) but

eagerly accept treatment for the Spina Bifida and Hydrocephalus? Are there books

that you know of that I should read about clubfeet?

Donna

[Guest guest]

Hi, Donna,

I sent an email to your private email, but I'm not sure if you received it. My

son was born with spina bifida, hydro, bilateral clubfeet, hip dysplasia, etc

in September. I would be so happy to answer any questions you have.

--- Donna Casady wrote:

> Thank you all for the words of advice. I very much appreciate you sharing

> your thoughts and experiences. Someone mentioned that having Spina Bifida

> along with the clubfeet might bring up more issues or more difficulties

> (don't remember the exact wording that was used), but I don't understand what

> that would be.

Well, with spina bifida the feet are clubbed because of the spina bifida and

the nature of the foot is different than it would be on its own. My oldest was

also born with clubfoot (no sb), and it is a different type of foot. Do you

know what level of sb your baby will have? Grant's is L4-L5 (lumbar region),

and the lesion level can affect things.

Spina bifida involves a lot of the lower body. Nerves and muscles (of the

entire leg, glutes, hips) are affected that aren't affected in a " regular "

clubfoot.

I know you mentioned you had a neurosurgeon lined up, but with sb you usually

need a team of doctors. I think trying the Ponseti method is the best route to

go(we did for Grant). It won't necessarily be successful, but it so worth a

try! Where will your baby be born and where will the baby go for treatment

after birth for the other issues associated with sb? Is there an sb clinic

nearby? www.sbaa.org would probably give you some great information. You also

can check out sbmoms-n-dads @ yahoogroups.com (w/o spaces). It's a great

resource.

>As far as traveling long distances, it's having 6 other

> children of whom one is also special needs, that makes traveling several

> hours or staying for weeks at a Mc house something that seems

> almost impossible. Traveling several hours one way would be totally

> possible, but not when it'd have to happen weekly for several weeks.

I can certainly empathise, though, I'm a few children shy...lol Grant is

number four for us. We have to travel about two hours for his treatment.

There are a lot, and I mean a lot, of appointments at first. I don't think

there's a way around it. I assume you'll also be dealing with a shunt for the

hydrocephalus, and that requires visits, also.

>I do

> take to heart that at least one person on this list told me that taking their

> child to a Dr. who did the method but wasn't certified resulted in them

> taking that child to Ponseti for correction. It's a lot to think about and

> I'm spending a lot of time doing that. I'd like to have a plan in place

> before the baby is born so that I don't make a mistake by letting a Dr. I

> don't really want to use begin to work on and then have to transfer to

> a different Dr. If I refuse the services of the ortho that I'm expected to

> use here locally, I feel I need to be able to explain to the Ped. my

> reasoning and my plan for treatment. Will they give me trouble or pressure

> if I refuse treatment for the clubfeet (because I want to take him elsewhere)

> but eagerly accept treatment for the Spina Bifida and Hydrocephalus? Are

> there books that you know of that I should read about clubfeet?

We refused treatment for Grant's feet because we had lined up a doctor. And

really, the clubfeet can go untreated for months if need be. The clubfeet will

be the least of your, and your doctors', worries when is born. The

closure and shunt placement, and how well are doing are much more

important at first than correcting the feet. That was a truth I had a hard

time accepting beforehand (and after). We ended up starting treatment for

Grant's feet at two weeks. He was in casts for two months (weekly cast

changes), and he had tenotomies. His feet aren't fully corrected, but he's in

AFOs to hold the correction.

Please, please feel free to email me. joybelle15 @ yahoo.com or I can email

you my number and you can call.

You are amazing to be bringing this incredible child into your life.

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

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