Re: Update on

[Guest guest]

I'm game! Let's go kick some booty!

Love, squeek

--- OneSuperMema@... wrote:

> In a message dated 07/30/2002 2:46:17 AM Central

> Daylight Time,

> Rpolychondritis writes:

>

>

> > It seems that as of yesterday that hadn't put her

> on her RP meds or her

> > hormones so she was really not doing well.

>

> Okay everyone. How many are willing to go to CA and

> give that hospital " what

> for " for messing with our ? She's fought too

> hard to get well.

> Love,

>

>

=====

__________________________________________________

[Guest guest]

Great news! Thanks, . Love, squeek

--- OneSuperMema@... wrote:

> Hello all,

> I just chatted with . She said to tell you

> all that she misses you

> very much and she is going to have her daughter

> start reading your posts.

> She is doing well and will get back online soon.

> She is not taking phone

> calls because she can't hold the phone, but she is

> taking her pain pills and

> resting as much as possible so she can get back to

> doing what she loves most,

> one of which is being online with us. She loves

> you.

> Love,

>

>

=====

__________________________________________________

[Guest guest]

Hi ,

I'm glad to see that you are still improving! I agree with your

cardiologist, get rid of any guilt! You are doing great and will

continue to challenge yourself appropriately!

Take care,

M

[Guest guest]

Squeek

Thanks for the update on ! Gish that poor woman sure has had her share of it! I will be sending supper duper special thoughts and prayers her way! At least he finally thinks she is flaring and has RP!

Again Thanks

Lots of Love

Glenda

[Guest guest]

Thanks for the information Heidi

I was going to call and check on her this weekend so will just hold

off. I've been without phones for 4 days...was hit big time with

lighting...damaged the well pump. my sat dish and receivers and

killed one computer...damaged the UPS's we had on the other two

computers, but they came through in except for one modem.

Because of the lack of rain last year even with all the rain we are

getting now we are subject to more and intense lighting hits...Well

guy told me the storm before this one that got me killed over 20

well pumps.

Here we don't have city water so we panic when we don't have a

working pump.

How is Don doing...since I didn't have phones have been sorta locked

out to the rest of the world...hope he's doing okay now.

hugs

Sharyn

> Have a little Update on !!!

>

> She is ok !!!! She decided to go to the Beach for the weekend

after her Drs. Appointments.

> All the drs where happy with her progress.

> Cant blame her she has been so coupped up at home. I hope she does

enjoy it. She really need it something to change her scenery.

> She be back Sunday night.

>

> Heidi

[Guest guest]

Sue, this is so hard on everyone. I cannot be especially moved by the

possibility

of her having CFRD, although it could be type II, that does seem unlikely at her

age. There are ways that they can distinguish between Type I, II and CFRD,

which

is a whole different thing, in many ways. The port sounds like an excellent

idea,

though I still use one, since my CFRD has been TOTALLY under control, I have

less trouble with any kind of line, including peripheral, which is nice. I am

so glad

that you wrote. I have missed hearing about all of you. Thank you for letting

us

know what you have been going through, and also achieving in your family.

Love to all of you, Sue, n Rojas, wcf, CFRD, mom of 3 adults, the youngest

of whom has cf as well--no cfrd so far--even has veins! You have a good year

now and keep us " posted. " please!

update on

Hello all. I haven't written in a while and thought I would catch you up on

what has been happening.

spent Thanksgiving in the hospital in Birmingham. That was okay with

us. That meant we would actually get to spend New Years at home. A first

for us in a while since she has been in the hospital on New Years the last

several years.

She only stayed in the hospital for 8 days. They gave her Tobramycin and

Timentin. The doctor said the MRSA was culturing abundant but he wanted to

try

Timentin instead of Vancomycin since she had just had Vanc in May/June. We

are

going back in the hospital in mid-January to get the Vanc. Timentin did not

get her PFT's back up enough he said. Also, she had a mid-line and they let

us come home with home iv's. She has had home iv's before, but we had so much

trouble with the line we finally ended up at the local ER (Birmingham is 3

hours away). The ER doctor was very honest and upfront from the beginning.

He

said he knew next to nothing about CF and there was one nurse on duty who had

taken out and put in mid-lines but she wasn't comfortable with it so he took

it

out for us. This is after he asked us what exactly did we need him to do.

He was extremely nice about it, kind, compasionate, etc. I sort of felt sorry

for him. I explained the complications we were having and told him

had pain the last two doses of Timentin so I felt we should take it out. She

only had 2 more days left of meds anyway. He agreed and took it out.

I called Birmingham the next day to let them know and Dr. Mackris wanted to

see her asap. We went the next day. He checked PFT's and told us to plan on

a

hospital stay in January when we would do Vanc and probably have to do it

with a peripherial line instead of the picc or mid line. He also told us to

plan

on coming in during Spring Break to get a port.

During her hospital stay he was very concerned with her sugar levels. She

went from 99 to 268. The 268 was when a nurse checked it immediately after a

night feeding and she had received 2000 calories over 7 hours. Well, anyway

we

are going to see another doctor and she will be diagnosed with CFRD. They

sent some papers for me to fill out prior to the visit. After doing some

family

research, I have discovered that the brother I have with diabetes has type 1

and the 2 sisters my husband has with diabetes have type 2. I don't know if

this will make any difference with or not.

Anyway, that is where we are right now.

Hope everyone had a very Merry Christmas and sending wishes for a very Happy

New Year to all.

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

Hi there. I have been out of town & getting ready for some more short 'out

of town time again " But wanted to tell you .first I am sorry your reports

might show CFRD. But I will be happy to you a booklet on that if you'd send

me your address. -I wont be back in office until Mo & will send it then if

you'd like. It is informative & folks say it helps allot....answers many

questions, etc.

wishes on the clinic visit again..

happy New ye.

LOVE & HUGS< GrandmomBEV

update on

Hello all. I haven't written in a while and thought I would catch you up on

what has been happening.

spent Thanksgiving in the hospital in Birmingham. That was okay

with

us. That meant we would actually get to spend New Years at home. A first

for us in a while since she has been in the hospital on New Years the last

several years.

She only stayed in the hospital for 8 days. They gave her Tobramycin and

Timentin. The doctor said the MRSA was culturing abundant but he wanted to

try

Timentin instead of Vancomycin since she had just had Vanc in May/June. We

are

going back in the hospital in mid-January to get the Vanc. Timentin did not

get her PFT's back up enough he said. Also, she had a mid-line and they let

us come home with home iv's. She has had home iv's before, but we had so

much

trouble with the line we finally ended up at the local ER (Birmingham is 3

hours away). The ER doctor was very honest and upfront from the beginning.

He

said he knew next to nothing about CF and there was one nurse on duty who

had

taken out and put in mid-lines but she wasn't comfortable with it so he took

it

out for us. This is after he asked us what exactly did we need him to do.

He was extremely nice about it, kind, compasionate, etc. I sort of felt

sorry

for him. I explained the complications we were having and told him

had pain the last two doses of Timentin so I felt we should take it out. She

only had 2 more days left of meds anyway. He agreed and took it out.

I called Birmingham the next day to let them know and Dr. Mackris wanted to

see her asap. We went the next day. He checked PFT's and told us to plan

on a

hospital stay in January when we would do Vanc and probably have to do it

with a peripherial line instead of the picc or mid line. He also told us to

plan

on coming in during Spring Break to get a port.

During her hospital stay he was very concerned with her sugar levels. She

went from 99 to 268. The 268 was when a nurse checked it immediately after

a

night feeding and she had received 2000 calories over 7 hours. Well, anyway

we

are going to see another doctor and she will be diagnosed with CFRD. They

sent some papers for me to fill out prior to the visit. After doing some

family

research, I have discovered that the brother I have with diabetes has type 1

and the 2 sisters my husband has with diabetes have type 2. I don't know if

this will make any difference with or not.

Anyway, that is where we are right now.

Hope everyone had a very Merry Christmas and sending wishes for a very Happy

New Year to all.

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I

have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of

age at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

WOW!I bet that's a lot for you to handle going on all at once.I hope

January's iv treatment goes well for you!

Patty, mom to Tyler,8,wcf and 2 lil ones wocf in the Sunshine State

> Hello all. I haven't written in a while and thought I would catch

you up on

> what has been happening.

>

> spent Thanksgiving in the hospital in Birmingham. That was

okay with

> us. That meant we would actually get to spend New Years at home.

A first

> for us in a while since she has been in the hospital on New Years

the last

> several years.

>

> She only stayed in the hospital for 8 days. They gave her

Tobramycin and

> Timentin. The doctor said the MRSA was culturing abundant but he

wanted to try

> Timentin instead of Vancomycin since she had just had Vanc in

May/June. We are

> going back in the hospital in mid-January to get the Vanc.

Timentin did not

> get her PFT's back up enough he said. Also, she had a mid-line and

they let

> us come home with home iv's. She has had home iv's before, but we

had so much

> trouble with the line we finally ended up at the local ER

(Birmingham is 3

> hours away). The ER doctor was very honest and upfront from the

beginning. He

> said he knew next to nothing about CF and there was one nurse on

duty who had

> taken out and put in mid-lines but she wasn't comfortable with it

so he took it

> out for us. This is after he asked us what exactly did we need him

to do.

> He was extremely nice about it, kind, compasionate, etc. I sort of

felt sorry

> for him. I explained the complications we were having and told him

> had pain the last two doses of Timentin so I felt we should take it

out. She

> only had 2 more days left of meds anyway. He agreed and took it

out.

> I called Birmingham the next day to let them know and Dr. Mackris

wanted to

> see her asap. We went the next day. He checked PFT's and told us

to plan on a

> hospital stay in January when we would do Vanc and probably have to

do it

> with a peripherial line instead of the picc or mid line. He also

told us to plan

> on coming in during Spring Break to get a port.

> During her hospital stay he was very concerned with her sugar

levels. She

> went from 99 to 268. The 268 was when a nurse checked it

immediately after a

> night feeding and she had received 2000 calories over 7 hours.

Well, anyway we

> are going to see another doctor and she will be diagnosed with

CFRD. They

> sent some papers for me to fill out prior to the visit. After

doing some family

> research, I have discovered that the brother I have with diabetes

has type 1

> and the 2 sisters my husband has with diabetes have type 2. I

don't know if

> this will make any difference with or not.

> Anyway, that is where we are right now.

> Hope everyone had a very Merry Christmas and sending wishes for a

very Happy

> New Year to all.

>

> Sue Pettit of Tupelo, Mississippi

> mom to (17 wocf) driving and being the most responsible 17

yo I have

> ever seen, (13 wocf) playing baseball, football, band, and

whatever

> else he can get into, and (12 wcf) into all sports,

enjoying lots of

> friends, running full speed and doing all she can---diagnosed at 8

days of age at

> LeBonheur Childrens Medical Center in Memphis, Tennessee, now

seeing Doctors

> Lyrene and Makris (and lots of other wonderful folks, of course) at

UAB

> Children's Hospital in Birmingham, Alabama

>

>

>

[Guest guest]

Thanks so much .

Same healthy and happy wishes are being sent to you and your family!!!!!!

Sue Pettit of Tupelo, Mississippi

mom to (17 wocf) driving and being the most responsible 17 yo I have

ever seen, (13 wocf) playing baseball, football, band, and whatever

else he can get into, and (12 wcf) into all sports, enjoying lots of

friends, running full speed and doing all she can---diagnosed at 8 days of age

at

LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctors

Lyrene and Makris (and lots of other wonderful folks, of course) at UAB

Children's Hospital in Birmingham, Alabama

[Guest guest]

Hi Sue,

I am sorry to hear the Timentin didn't work for Val. And that she has to go

back in,. but I hope they get things under control. You were lucky with the ER

doc, usually if they have no clue they won't admit it. I am impressed.

Best of luck for the New Year and with the admission. Oh and also I'm very

sorry to hear about the CFRD. That is a tough cookie to swallow.

love,

M

mom of Nick age 21 no cf and age 19 wcf

[Guest guest]

Hi Beth,

I forgot to mention this when you posted it but it looks like

is doing great. You must be thrilled that she has grown so

much in the past year.

Just so you have a point of comparison, my son is 7 1/2. He is about

46 inches tall and weighs almost exactly 43 lbs.

By the way, where do you live? What doctor do you see for 's

RSS? Looks like she/he is being a big help also. Maybe some one on

this list is looking for a new doctor and might consider yours.

As I have mentioned before, I live in southern New Hampshire and we

take our son into Boston to see a Dr. Ricker.

Anyway, glad to hear about great progress.

Ken M

>

>

> For those of you who missed my prior posts on (age 6), I

> can give you some more current information since we just got back

> from a visit to her doctor and he continues to feel she is

> progressing nicely after discontinuing growth hormone a bit more

> than a year ago. grew 6 inches in the past year to 45

> inches and 43 lbs.

>

> When we discovered had RSS at age two with normal GH

> levels, we floundered around with a variety of approaches but this

> by far has been the most successful and least invasive. The

> hypoglycemic episodes, periodic seizures, hyperactivity that pushed

> her to the point of exhaustion, difficulty concentrating, reflux

and

> other gut related issues are now behind us.

>

> Hopefully my truncated post did not bend anyone's ear to far this

> time.

>

> Beth

[Guest guest]

Ken, that is such great news. You and Janet must be thrilled!

When you figure out the homework problem - let me know. You could

make millions.....

Beth

>

> Hi everyone,

>

> Just wanted to share a littel good news.

>

> Yesterday we had an appointment with his pediatric endocrinologist

in

> Boston. Since his last visit in November, he has gained 2.7 pounds

> (1.22 Kg) and grew almost 1.5 inches(3.8 cm). For the fist time,

this

> puts him just over the 5th percentile on a normal growth chart.

>

> Also, it is clear that his growth is acclerating. At his next

visit,

> if he continues at this rate, the doctor may need to increase his

> growth hormone dosage.

>

>

> Now if we can just get him to do his homework.

>

>

> Ken M

>

[Guest guest]

Hi Beth,

I figure billions. It may have to be some sort of daily injection.

I think I'll finish that right after I complete work on the DO WIM

(Do What I Mean -- not what I said) key for my computer.

Ken M

> >

> > Hi everyone,

> >

> > Just wanted to share a littel good news.

> >

> > Yesterday we had an appointment with his pediatric

endocrinologist

> in

> > Boston. Since his last visit in November, he has gained 2.7

pounds

> > (1.22 Kg) and grew almost 1.5 inches(3.8 cm). For the fist time,

> this

> > puts him just over the 5th percentile on a normal growth chart.

> >

> > Also, it is clear that his growth is acclerating. At his next

> visit,

> > if he continues at this rate, the doctor may need to increase his

> > growth hormone dosage.

> >

> >

> > Now if we can just get him to do his homework.

> >

> >

> > Ken M

> >

[Guest guest]

hey ken!!!

HORRAY FOR KEVIN!!!! that is such great news!!! good luck with the

homework battle!!!!

jodie c

[Guest guest]

Ken,

Great to hear that! Josh is at the 5th percentile now, too, although his growth

rate is slower than 's. I'll post more soon.

- Joe

>

> Hi everyone,

>

> Just wanted to share a littel good news.

>

> Yesterday we had an appointment with his pediatric endocrinologist in

> Boston. Since his last visit in November, he has gained 2.7 pounds

> (1.22 Kg) and grew almost 1.5 inches(3.8 cm). For the fist time, this

> puts him just over the 5th percentile on a normal growth chart.

>

> Also, it is clear that his growth is acclerating. At his next visit,

> if he continues at this rate, the doctor may need to increase his

> growth hormone dosage.

>

>

> Now if we can just get him to do his homework.

>

>

> Ken M

>

[Guest guest]

Hi Amber,

Really great news !! So glad that is now on the right track!

I am sure that he will calm down for his casting and you are going to

see amazing results with Dr. Dobbs, really happy for you hon! Please

keep us updated with his progress!

Smiles,

& Grace 19mos

urcf FAB 13hrs

>

> Hello everyone

>

> Just wanted yall to know that we had our appointment yesterady with

Dr

> Dobbs. They took x-rays then pics.. everyone up there was so great

and

> friendly. Maybe next time nathan will be better with not screaming

with

> the casting part. should only have to have about 4 or 5 cast. They

said

> him screaming like that was because of having a bad cast experience

in

> the past. we caught the shriner van from memphis to st louis then

back

> to memphis yesterday. i didnt get the feelin that i did when i

went to

> his first docter when i went up there and talked with everyone. it

was

> a wonderful experience with everything

>

> Amber

> mommy to nathan

>

[Guest guest]

Amber-

Way to go and congrats on the good news. You are certainly in good

hands. I understand the whole screaming process about casting-my son

just spent 2 days in the hospital and within the first 2 hours of

being there, he learned to fear people in scrubs!(hee hee) He even

was weary of the cleaning lady as she too wore scrubs. Its amazing

how perceptive babies can be. I am glad to hear everything is going

well for !

kathleen

mom to david fab 12/7 bcf 18mo old

>

> Hello everyone

>

> Just wanted yall to know that we had our appointment yesterady

with Dr

> Dobbs. They took x-rays then pics.. everyone up there was so great

and

> friendly. Maybe next time nathan will be better with not screaming

with

> the casting part. should only have to have about 4 or 5 cast. They

said

> him screaming like that was because of having a bad cast

experience in

> the past. we caught the shriner van from memphis to st louis then

back

> to memphis yesterday. i didnt get the feelin that i did when i

went to

> his first docter when i went up there and talked with everyone. it

was

> a wonderful experience with everything

>

> Amber

> mommy to nathan

>

[Guest guest]

Naomi (and any others using the shoes)

I'd welcome advice on getting insurance to pay for it. With our current

Markell shoes/DBB the orthotic shop gave them to us and billed insurance

directly, which was quite nice. It would be nice to do the same with

the 's, but if I can't I'd certainly welcome any suggestions on

getting insurance to help cover it. I am a grad student after all.

Tom

Re: Update on

Tom and family,

Thanks for the update. You won't regret going to see Dr Frick for that

second opinion. He is a very experienced doctor and his own son was

born with clubfoot. The fact that his now-teenaged son is dealing with

the aftermath of surgical correction makes him all that more dedicated

to treating babies with the Ponseti method. I know that there are a few

of his patients in this group, hopefully some of them will chime in

here.

Good news, too, that Dr Ponseti isn't seeing anything too alarming in

the pictures of 's feet. In the second set of pictures you sent

to CFPics, 's feet actually looked much better than in the first

(albeit to my untrained eye). It's hard to diagnose without actually

feeling of the feet, but Dr Ponseti seems to have a flair for it! Dr

Frick, of course, will be able to tell you just what's going on.

As far as the brace goes, I know that a few of Dr Frick's

patients are using it. And lots of families here in the group have

experience with getting insurance to pay for it and so on. If you have

any questions about any of that, you know where to ask them.

Please keep us updated on 's progress.

Naomi

The Family, North Coast of California

Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

tomasrbraun wrote: As those of you know who

have been following the discussion on the

CFPics group, I contacted Dr. Ponseti, Dr. Dobbs, and Dr. Herzenberg

to get an opinion on 's feet. All three of them suggested we

go see Dr. Frick, since he's only 3 hours from here. Ponseti

actually called us a little while ago! The good news is he doesn't

think 's correction is that off, and said they may want to do

one more cast to get some more dorsiflection, but then to try the

shoes instead. In his opinion 's " chubby feet " were

too wide for the Markell shoes, and this was where most of the

discomfort was.

I'm glad to find out our current doctor may not have been as far off

as was feared. We saw him today as well, and he didn't see any

problems with the way 's feet were sitting in the shoe -- only

said the socks were kinda thick (I'm not sure what to make of this

one -- they were the Target brand Circo baby socks with grippers on

the bottom, not the thinnest I've seen but pretty much normal, solid

colored socks). Evidently not too thick to evaluate the feet without

taking the socks off though. We're sticking with our socks, and

trying to keep the brace on as well even though doesn't like

it. If the correction is not bad, we don't want to cause a relapse

by taking it off. We're also going to go see Dr. Frick next Monday

for a second opinion, just to make sure things are ok.

Thanks again for the help and support.

Tom, , and

[Guest guest]

Tom,

You will have to file a claim with your insurance co after you receive the

s. I sent a letter from her doc explaining why she needed the

s, and couldn't tolerate the Markells with my claim. The doctor also

explained in his letter that my daughter will need to get new s from

time to time, because she will outgrow her current ones. I know that seems

so basic, and of course the insurance co should know that, but they don't. I

made a copy of that letter, and sent them the copy. I will send them a copy

of the same letter everytime she needs new ones. I also sent a copy of the

invoice from the s. I went ahead and paid for the s in the

mean time, but the check from the insurance company came within two weeks of

mailing the claim for the first set.

This was my first time having to file a claim, because, as you said, the

othotist shop always billed the insurance company directly. It was fairly

painless, though! You will need to get some claim forms from your insurance

co to have on hand when you need them, and find out what your deductible

will be before you order. That way, you aren't hit with a surprise when the

check comes (our company pays 80% of the cost, so the check wasn't for the

full amount).

Hope that helps!

( 2/1/05 P/M 20/7)

>

>Reply-To: nosurgery4clubfoot

>To: <nosurgery4clubfoot >

>Subject: RE: Update on

>Date: Tue, 11 Apr 2006 08:46:29 -0400

>

>Naomi (and any others using the shoes)

>

>I'd welcome advice on getting insurance to pay for it. With our current

>Markell shoes/DBB the orthotic shop gave them to us and billed insurance

>directly, which was quite nice. It would be nice to do the same with

>the 's, but if I can't I'd certainly welcome any suggestions on

>getting insurance to help cover it. I am a grad student after all.

>

>Tom

>

> Re: Update on

>

>

>Tom and family,

>

>Thanks for the update. You won't regret going to see Dr Frick for that

>second opinion. He is a very experienced doctor and his own son was

>born with clubfoot. The fact that his now-teenaged son is dealing with

>the aftermath of surgical correction makes him all that more dedicated

>to treating babies with the Ponseti method. I know that there are a few

>of his patients in this group, hopefully some of them will chime in

>here.

>

>Good news, too, that Dr Ponseti isn't seeing anything too alarming in

>the pictures of 's feet. In the second set of pictures you sent

>to CFPics, 's feet actually looked much better than in the first

>(albeit to my untrained eye). It's hard to diagnose without actually

>feeling of the feet, but Dr Ponseti seems to have a flair for it! Dr

>Frick, of course, will be able to tell you just what's going on.

>

>As far as the brace goes, I know that a few of Dr Frick's

>patients are using it. And lots of families here in the group have

>experience with getting insurance to pay for it and so on. If you have

>any questions about any of that, you know where to ask them.

>

>Please keep us updated on 's progress.

>

>Naomi

>The Family, North Coast of California

> Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

>

>tomasrbraun wrote: As those of you know who

>have been following the discussion on the

> CFPics group, I contacted Dr. Ponseti, Dr. Dobbs, and Dr. Herzenberg

> to get an opinion on 's feet. All three of them suggested we

> go see Dr. Frick, since he's only 3 hours from here. Ponseti

> actually called us a little while ago! The good news is he doesn't

> think 's correction is that off, and said they may want to do

> one more cast to get some more dorsiflection, but then to try the

> shoes instead. In his opinion 's " chubby feet " were

> too wide for the Markell shoes, and this was where most of the

> discomfort was.

>

> I'm glad to find out our current doctor may not have been as far off

> as was feared. We saw him today as well, and he didn't see any

> problems with the way 's feet were sitting in the shoe -- only

> said the socks were kinda thick (I'm not sure what to make of this

> one -- they were the Target brand Circo baby socks with grippers on

> the bottom, not the thinnest I've seen but pretty much normal, solid

> colored socks). Evidently not too thick to evaluate the feet without

> taking the socks off though. We're sticking with our socks, and

> trying to keep the brace on as well even though doesn't like

> it. If the correction is not bad, we don't want to cause a relapse

> by taking it off. We're also going to go see Dr. Frick next Monday

> for a second opinion, just to make sure things are ok.

>

> Thanks again for the help and support.

> Tom, , and

>

>

>

>

>

>

>

[Guest guest]

Tom,

These are the codes used for the PM's. You can

try going through the orthotists and have them

bill the insurance for you but make sure what the

orthotists markup is before you go that

way. Some orthotists are marking them up past

the point of reasonable (like $1300) which still

leaves you with about the price of the shoes

themselves to pay as your percentage. The shoes

cost about $380 total with shipping and impression kits. No more.

Call your insurance company and ask if they cover

CPT codes L1907 (afo/shoes) and L3150 (bar) and

how much. Then decide whether to order them

directly or through your orthotist.

Kori

At 08:32 AM 4/11/2006, you wrote:

>Tom,

>

>You will have to file a claim with your insurance co after you receive the

>s. I sent a letter from her doc explaining why she needed the

>s, and couldn't tolerate the Markells with my claim. The doctor also

>explained in his letter that my daughter will need to get new s from

>time to time, because she will outgrow her current ones. I know that seems

>so basic, and of course the insurance co should know that, but they don't. I

>made a copy of that letter, and sent them the copy. I will send them a copy

>of the same letter everytime she needs new ones. I also sent a copy of the

>invoice from the s. I went ahead and paid for the s in the

>mean time, but the check from the insurance company came within two weeks of

>mailing the claim for the first set.

>

>This was my first time having to file a claim, because, as you said, the

>othotist shop always billed the insurance company directly. It was fairly

>painless, though! You will need to get some claim forms from your insurance

>co to have on hand when you need them, and find out what your deductible

>will be before you order. That way, you aren't hit with a surprise when the

>check comes (our company pays 80% of the cost, so the check wasn't for the

>full amount).

>

>Hope that helps!

> ( 2/1/05 P/M 20/7)

>

>

> >

> >Reply-To: nosurgery4clubfoot

> >To: <nosurgery4clubfoot >

> >Subject: RE: Update on

> >Date: Tue, 11 Apr 2006 08:46:29 -0400

> >

> >Naomi (and any others using the shoes)

> >

> >I'd welcome advice on getting insurance to pay for it. With our current

> >Markell shoes/DBB the orthotic shop gave them to us and billed insurance

> >directly, which was quite nice. It would be nice to do the same with

> >the 's, but if I can't I'd certainly welcome any suggestions on

> >getting insurance to help cover it. I am a grad student after all.

> >

> >Tom

> >

> > Re: Update on

> >

> >

> >Tom and family,

> >

> >Thanks for the update. You won't regret going to see Dr Frick for that

> >second opinion. He is a very experienced doctor and his own son was

> >born with clubfoot. The fact that his now-teenaged son is dealing with

> >the aftermath of surgical correction makes him all that more dedicated

> >to treating babies with the Ponseti method. I know that there are a few

> >of his patients in this group, hopefully some of them will chime in

> >here.

> >

> >Good news, too, that Dr Ponseti isn't seeing anything too alarming in

> >the pictures of 's feet. In the second set of pictures you sent

> >to CFPics, 's feet actually looked much better than in the first

> >(albeit to my untrained eye). It's hard to diagnose without actually

> >feeling of the feet, but Dr Ponseti seems to have a flair for it! Dr

> >Frick, of course, will be able to tell you just what's going on.

> >

> >As far as the brace goes, I know that a few of Dr Frick's

> >patients are using it. And lots of families here in the group have

> >experience with getting insurance to pay for it and so on. If you have

> >any questions about any of that, you know where to ask them.

> >

> >Please keep us updated on 's progress.

> >

> >Naomi

> >The Family, North Coast of California

> > Naomi Hannah(2/21/1) Jonah(6/20/3, corrected BCF, FAB 12-14/7)

> >

> >tomasrbraun wrote: As those of you know who

> >have been following the discussion on the

> > CFPics group, I contacted Dr. Ponseti, Dr. Dobbs, and Dr. Herzenberg

> > to get an opinion on 's feet. All three of them suggested we

> > go see Dr. Frick, since he's only 3 hours from here. Ponseti

> > actually called us a little while ago! The good news is he doesn't

> > think 's correction is that off, and said they may want to do

> > one more cast to get some more dorsiflection, but then to try the

> > shoes instead. In his opinion 's " chubby feet " were

> > too wide for the Markell shoes, and this was where most of the

> > discomfort was.

> >

> > I'm glad to find out our current doctor may not have been as far off

> > as was feared. We saw him today as well, and he didn't see any

> > problems with the way 's feet were sitting in the shoe -- only

> > said the socks were kinda thick (I'm not sure what to make of this

> > one -- they were the Target brand Circo baby socks with grippers on

> > the bottom, not the thinnest I've seen but pretty much normal, solid

> > colored socks). Evidently not too thick to evaluate the feet without

> > taking the socks off though. We're sticking with our socks, and

> > trying to keep the brace on as well even though doesn't like

> > it. If the correction is not bad, we don't want to cause a relapse

> > by taking it off. We're also going to go see Dr. Frick next Monday

> > for a second opinion, just to make sure things are ok.

> >

> > Thanks again for the help and support.

> > Tom, , and

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

HI ,

It's great news that s feet are doing so great and it's always fantastic

to hear a Ponseti doctor tell you that.

However I don't want to rain on your parade here but it is considered not a

great thing to drop down to nighttimes only whilst your daughter is so young.

Children who have their hours reduced quickly to nighttime only often have

problems like relapses in the future. Dr Ponseti recommends a more gradual

reduction in hours so that night and naptimes is only reaches when your child

starts walking.

Hopefully someone will go into this in more detail as I have to race off aas my

son has just started screaming if not I'll come back later

Kathy:)

LocaShelly wrote: Hi, I

just wanted to share some very exciting news. We traveled from

Houston to Dallas on Friday to see the Ponseti certified doctor in

Texas for her 3 month check up. The Dr. confirmed that her feet were

doing great and now has told us to go nights only. Our next checkup is

in 6 months. We are so happy that everything is working out and

although we didn't have a certified doctor in California, he did a

good job (even with the tweaks). is 7 months old now and

definitely looking forward to the new freedom. She'll probably start

crawling any day now. Just wanted to keep you guys updated.

Thanks,

& (11/22/05 - bcf - dbb 12hr/7d)

---------------------------------

All New Yahoo! Mail – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you.