HELP PLEASE-SLEEPLESS NIGHTS!!

[Guest guest]

Hi, my name is Kate and I am new to this board. Our 3 month old

son Jude just came out of the cast on Friday and now has the boots and

bars. He is wonderful during the day and has no problems with

them...but the night is a different story. He is up every 20 minutes

kicking and screaming, which he never did before the boots and bars. I

put him to sleep on his back normally but in the last two nights have

tried his stomach but he always just buries his head in his crib

mattress, which terrifies me. Does anyone have any suggestions for how

to get him adjusted to the boots and bars at nighttime? THANK YOU SO

MUCH...I am desperate

Kate

[Guest guest]

Kate,

First of all, welcome to the group! We're glad you found us.

It is not at all uncommon for children to have an--thankfully, usually very

short--adjustment period to the boots and bar. (You'll find that most of us

here refer to it as the Foot Abduction Brace, FAB or Denis Browne Bar, DBB.)

That Jude is fine with the FAB during the day, and not miserable ALL of the time

is a good sign. You may want to try rolling up a towel and putting that under

his legs while he is sleeping on his back. Many parents have also found that

bringing baby into bed with them for the first few days has helped everyone get

more sleep.

Would you tell us some more about Jude's treatment? Where are you located and

who is treating Jude? How do his feet look? Do you see signs of redness or

sores when you take the shoes off? Is he slipping his feet out of them at all?

I'll send you, in a seperate email, a copy of a guide to the FAB that a few of

us are working on right now. It's still at the not-quite-complete draft stage,

but hopefully you will find some very useful information.

Please do let us know if you have other questions or concerns. And happy,

happy, happy Mother's Day!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot, FAB 14/7)

clarkkoehl clarkkoehl@...> wrote:

Hi, my name is Kate and I am new to this board. Our 3 month old

son Jude just came out of the cast on Friday and now has the boots and

bars. He is wonderful during the day and has no problems with

them...but the night is a different story. He is up every 20 minutes

kicking and screaming, which he never did before the boots and bars. I

put him to sleep on his back normally but in the last two nights have

tried his stomach but he always just buries his head in his crib

mattress, which terrifies me. Does anyone have any suggestions for how

to get him adjusted to the boots and bars at nighttime? THANK YOU SO

MUCH...I am desperate

Kate

[Guest guest]

Sorry to jump in on your post but if Naomi is reading this please please may I

too have a copy of the FAB guide (sure it is in more ways than one!).

Berry has now been in her's for a month, and luckily for us all has more or less

settled, but I would love to read any tips or guides you may have.

Many thanks and look forward to hearing from you

--- Naomi powellbugs@...> wrote:

Date: Sun, 8 May 2005 15:34:35 -0700 (PDT)

To: nosurgery4clubfoot

Subject: Re: HELP PLEASE-SLEEPLESS

NIGHTS!!

Kate,

First of all, welcome to the group! We're glad you found us.

It is not at all uncommon for children to have an--thankfully,

usually very short--adjustment period to the boots and bar.

(You'll find that most of us here refer to it as the Foot

Abduction Brace, FAB or Denis Browne Bar, DBB.) That Jude is

fine with the FAB during the day, and not miserable ALL of the

time is a good sign. You may want to try rolling up a towel

and putting that under his legs while he is sleeping on his

back. Many parents have also found that bringing baby into bed

with them for the first few days has helped everyone get more

sleep.

Would you tell us some more about Jude's treatment? Where are

you located and who is treating Jude? How do his feet look?

Do you see signs of redness or sores when you take the shoes

off? Is he slipping his feet out of them at all?

I'll send you, in a seperate email, a copy of a guide to the

FAB that a few of us are working on right now. It's still at

the not-quite-complete draft stage, but hopefully you will find

some very useful information.

Please do let us know if you have other questions or concerns.

And happy, happy, happy Mother's Day!

Naomi

The Family

Naomi Hannah(02/21/01) Jonah(06/20/03, bilateral clubfoot,

FAB 14/7)

clarkkoehl clarkkoehl@...> wrote:

Hi, my name is Kate and I am new to this board. Our 3

month old

son Jude just came out of the cast on Friday and now has the

boots and

bars. He is wonderful during the day and has no problems with

them...but the night is a different story. He is up every 20

minutes

kicking and screaming, which he never did before the boots and

bars. I

put him to sleep on his back normally but in the last two

nights have

tried his stomach but he always just buries his head in his

crib

mattress, which terrifies me. Does anyone have any suggestions

for how

to get him adjusted to the boots and bars at nighttime? THANK

YOU SO

MUCH...I am desperate

Kate

[Guest guest]

Thank you so much Naomi for the kind words. It is such a releif to

have found this chatroom. Jude was born three months ago with a

right clubfoot. He is being treated at Children's Hospital in

Washington DC using the Ponsetti method. He was cast since he was

three days old and had the heel lengthening surgery about three

weeks ago. We are just in the DBB a few days now and learning

quickly how to make him comfortable. He has only slipped his feet

out once since Friday and I haven't noticed an excessive amount of

redness, which I hope means all is well. He is suppose to stay in

them for 23 hrs a day, which I have been doing religiously so far. I

met another mom at the hospital who told me her son usually is only

in them for about 21 hrs a day, do you think this makes a

difference? I wasn't sure if I was being a little to strict with

the rules

How are your sons feet coming along? Are you happy with your care?

Thanks for answering all of my rookie questions

Kate

> Hi, my name is Kate and I am new to this board. Our 3 month

old

> son Jude just came out of the cast on Friday and now has the boots

and

> bars. He is wonderful during the day and has no problems with

> them...but the night is a different story. He is up every 20

minutes

> kicking and screaming, which he never did before the boots and

bars. I

> put him to sleep on his back normally but in the last two nights

have

> tried his stomach but he always just buries his head in his crib

> mattress, which terrifies me. Does anyone have any suggestions for

how

> to get him adjusted to the boots and bars at nighttime? THANK YOU

SO

> MUCH...I am desperate

>

> Kate

>

>

>

>

>

>

>

[Guest guest]

Kate.

I noticed you mentioned you take Jude to Shriners in Washington DC. I

live in Northern Virginia. I didn't realize there is a Ponseti trained

doctor there. I take my daughter to Dr. Herzenberg in Baltimore. Do you

live in DC, Virginia or land? It sounds like treatment is going

really well for you thus far. I don't think 21 hours would be critical,

but I would try to stick to 23. When they are in the beginning stage of

the shoes, it doesn't take much time out of the shoes for regression to

start.

Also, since you are local, another mom from this site (Joanne Walton) and

myself started a local clubfoot support group. We meet the last Saturday

of every month at Borders Cafe in Fairfax. Please let me know if you are

interested and I can send you more information.

Welcome! Somehow I missed your first post.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Thank you so much, I would love to come to the support group! I

actually believe that I have met one of your members. She is a nurse

at andria Hospital (were I live) and she spoke with me about

clubfeet shortly after Jude was born. I am seeing Dr. Tosi at

Children's Hospital who came highly recommended to us by my

pediatrician. She is FANATICAL about the Ponsetti method (as is

everyone who works with her.) I feel like I live at the hospital so

I couldn't imagine going to Baltimore that much, I am so impressed

that you travel up there, I have heard great things as well about

Dr. Herzenberg.

Please send me info about the support group whenever you get a

chance!

Thanks,

Kate

> Kate.

> I noticed you mentioned you take Jude to Shriners in Washington

DC. I

> live in Northern Virginia. I didn't realize there is a Ponseti

trained

> doctor there. I take my daughter to Dr. Herzenberg in Baltimore.

Do you

> live in DC, Virginia or land? It sounds like treatment is

going

> really well for you thus far. I don't think 21 hours would be

critical,

> but I would try to stick to 23. When they are in the beginning

stage of

> the shoes, it doesn't take much time out of the shoes for

regression to

> start.

>

> Also, since you are local, another mom from this site (Joanne

Walton) and

> myself started a local clubfoot support group. We meet the last

Saturday

> of every month at Borders Cafe in Fairfax. Please let me know if

you are

> interested and I can send you more information.

>

> Welcome! Somehow I missed your first post.

>

>

>

>

>

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> x374

> fax

>

>

[Guest guest]

Hi May Kate.

I think Dr. Tosi has come a long way since 2001. Joanne Walton saw her in

the early days of her daughters treatment. She ended up switching to

Herzenberg because Dr. Tosi wasn't following the Ponseti method correctly.

That was almost 4 years ago. Since then, Dr. Tosi has attended some of

Dr. Herzenbergs clubfoot symposiums and I believe has adjusted her

treatment to meet the exact Ponseti protocol. Joanne can surely give you

more info about her. In fact if she reads this, maybe she will chime in.

I believe you met . and I were both using the same doctor in

Northern VA, who turned out to be no good (I'm being kind). She now takes

her son to Herzenberg as well. We would love to have you at our Support

Group!

Clubfoot Support

Group

For Parents of Children Born with Clubfoot

Last Saturday of Every Month

1:00 PM

at

Borders Café

11054 Lee Hwy

Fairfax, VA 22030

(intersection of Rt.50 & Rt.29)

For additional information contact Joanne Walton

or joannewalton2003@...

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Kori,

Speaking of the tips sheet, how is it coming a long?

I know you've been a little 'puter handicapped lately.

I think it is a really good idea that once the

document is done we should all pass it on to our

orthotics shops so they can hand it out to all their

patients (if we can convince them to do so).

--- clarkkoehl clarkkoehl@...> wrote:

> You are a lifesaver, thanks to all the tips he is

> sleeping much

> better. The document you sent me should be included

> with every pair

> of shoes given out to all parents...I have it

> sitting on my

> nightstand for easy reference:)

>

> I will try and keep Jude in the shoes for the 23

> hrs, you are

> definitely right about it being easier when he is

> younger. It is so

> nice though to have a place to bounce all of my

> questions off of

> people, before I was just harassing my doctor too

> much.

>

> I am glad to hear your son is making such great

> progress. What made

> you decide to travel the 600 miles? How often do you

> have to go? DO

> people who are not doing the Ponsetti method still

> do the surgery?

> Sorry to bug you more

>

> Thanks,

> Kate

>

> > Thank you so much Naomi for the kind words. It is

> such a releif to

> > have found this chatroom. Jude was born three

> months ago with a

> > right clubfoot. He is being treated at Children's

> Hospital in

> > Washington DC using the Ponsetti method. He was

> cast since he was

> > three days old and had the heel lengthening

> surgery about three

> > weeks ago. We are just in the DBB a few days now

> and learning

> > quickly how to make him comfortable. He has only

> slipped his feet

> > out once since Friday and I haven't noticed an

> excessive amount of

> > redness, which I hope means all is well. He is

> suppose to stay in

> > them for 23 hrs a day, which I have been doing

> religiously so far.

> I

> > met another mom at the hospital who told me her

> son usually is

> only

> > in them for about 21 hrs a day, do you think this

> makes a

> > difference? I wasn't sure if I was being a little

> to strict with

> > the rules

> >

> > How are your sons feet coming along? Are you happy

> with your care?

> >

> > Thanks for answering all of my rookie questions

> >

> > Kate

> >

> >

> >

> >

> > ---------------------------------

> > Do you Yahoo!?

> > Make Yahoo! your home page

> >

> > [Non-text portions of this message have been

> removed]

>

>

>

Jenna (4/7/01) & Sammy (9/25/04, RCF, Dobbs brace 16-18/7)

__________________________________________________

[Guest guest]

, I think you are right about her changing because I have

studied the Ponsetti method backwards and forwards and she is

following it exactly! I will definitely come to the support group,

will you be having it this month b/c of Memorial Day Weekend?

Thanks,

Kate

> Hi May Kate.

> I think Dr. Tosi has come a long way since 2001. Joanne Walton

saw her in

> the early days of her daughters treatment. She ended up switching

to

> Herzenberg because Dr. Tosi wasn't following the Ponseti method

correctly.

> That was almost 4 years ago. Since then, Dr. Tosi has attended

some of

> Dr. Herzenbergs clubfoot symposiums and I believe has adjusted her

> treatment to meet the exact Ponseti protocol. Joanne can surely

give you

> more info about her. In fact if she reads this, maybe she will

chime in.

>

> I believe you met . and I were both using the same

doctor in

> Northern VA, who turned out to be no good (I'm being kind). She

now takes

> her son to Herzenberg as well. We would love to have you at our

Support

> Group!

>

>

>

>

>

> Clubfoot Support

> Group

>

> For Parents of Children Born with Clubfoot

>

> Last Saturday of Every Month

>

> 1:00 PM

> at

> Borders Café

> 11054 Lee Hwy

> Fairfax, VA 22030

> (intersection of Rt.50 & Rt.29)

>

>

> For additional information contact Joanne Walton

> or joannewalton2003@y...

>

>

>

>

>

>

>

>

>

> Shook

> Retail Operations Manager/Baking Instructor

> Vie de France Yamazaki, Inc.

> 2070 Chain Bridge Rd. Suite 500

> Vienna, VA 22182

> x374

> x374

> fax

>

>

[Guest guest]

I believe as of now, the group is still meeting Memorial Day weekend.

However, I personally will not be there. I have already made plans to go

out of town.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax