RE: (unknown)

[Guest guest]

Congrats on Levi's good clinic appt. ((((Kathy G.))))

[Guest guest]

Same here, . Despite a number of ultrasounds, there was no

indication from the ob/gyn that there was anything wrong. My husband is

still furious with him, but I love my doctor and won't change to another.

does not agree, but I told him I would consider changing if HE went

there and put his own legs in the stirrups....

Jodi

(unknown)

>

>

> Hello everyone!

> I was just curious to know if most of you knew ther was

> something different about your child before they were born. Not that

> there is anything I can do about it, but I was wondering if I was the

> only one who's OB/GYN completly missed that there may be something

> wrong They're answer was that I must have miscalculated the date of

> conception! Needless to say that among the many other missed things

> has lead me to fire that particular group.

> Jodi- I'm sorry to hear you were sick-Ihope you & Max are

> feeling better.

>

> Talk to you all soon------

>

>

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

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2122/0/_/229381/_/952407147/

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>

>

>

[Guest guest]

Jodi, There is an image I was better off with out.

To my friends,

Peace and Prayers

Mark dad to 4 ( 5 in April), G-tube

[Guest guest]

Hi ,

The only thing I knew before my kids were born was that Baby " B " , aka

, was significantly smaller than my other two children. They

couldn't find anything wrong with him, we just kept thinking he's fine, just

small. I opted not to have an anmio, but did have LOTS and LOTS of

blookword, urine tests, ultrasounds, nonstress tests, etc. because of being

a high risk pregnancy with the triplets. Nothing ever pointed to anything

ever being wrong with -- he's just little. My delivery was at 33

weeks 4 days and mainly due to not growing anymore. My doctor felt

would do better out in NICU than in me anymore. The rest is

history.

Cheryl

Mom to , and (all two)

Wesolowski wrote:

>

>

> Hello everyone!

> I was just curious to know if most of you knew ther was

> something different about your child before they were born. Not that

> there is anything I can do about it, but I was wondering if I was the

> only one who's OB/GYN completly missed that there may be something

> wrong They're answer was that I must have miscalculated the date of

> conception! Needless to say that among the many other missed things

> has lead me to fire that particular group.

> Jodi- I'm sorry to hear you were sick-Ihope you & Max are

> feeling better.

>

> Talk to you all soon------

>

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

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2122/0/_/229381/_/952407147/

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

[Guest guest]

>Any way I told my neibour about Ivy and her

> treatment w/ Dr. Ponseti and she told her

> daughter in law.

Sara,

That is so cool! Have you heard anything more from them?

I think it was who said somewhere that he liked knowing all his

options for treatment. I wish info was easier to find. It has been

great being able to tell people about Dr. Ponseti's treatment method.

I have a woman from church who called me the other night. There is a

woman she knows who just had twins, and one of them might have clubfoot.

She gave her Rose's web page link and told her the night Rose was going

to be on tv. I haven't heard anymore yet, but I am going to call again.

I just think it's neat that Rose's story has touched other people in our

lives and they share it with others!

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Welcome to , , and Caleb!!! It is wonderful to have you here!

There is another parent named Pam who's son is using the French

Physiotherapy method, and they are having wonderful results. I'm sure

she'll be writing and saying " hi " !

We were extremely fortunate to be able to find out about Dr. Ponseti's

method, though it wasn't until Rose was 6 months old that she started

seeing him. If you would like to read her story and see pics, the link

is below my signature.

I checked out the pictures of Caleb's foot, and wow! It is beautiful!

The French Physiotherapy sounds very interesting, and I think it's

going to be great having two of you on the list now!

Once again, welcome, and I hope we continue to hear more from you.

Joy, Neil, and Rose (1-30-99)

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Suzanne,

My son was born with bilateral clubfeet last September. We

initially went to the Shriner's for his treatment, but they wanted to do

surgery and were not willing to try Dr. Ponseti's method. and I

flew to Iowa City to see Dr. Ponseti. He is now 10 months old and his feet

are absolutely beautiful! The only surgery had was a heel chord

lengthening with local anesthetic, done when he was 4 1/2 months old.

As for your MIL...I understand that completely. My grandmother is miffed

because we didn't follow through with the Shriner's, too. She basically told

me I was crazy for flying to Iowa with and turning my family's

life upside down. But she can't deny the results are fantastic. We recently

followed up with a local doctor and he said you could never tell that

had been born with clubfeet. The bottom line is that you have to

do what you feel is best for your son.

I wish you the best!

In Him,

Kim, wife to

mother to Kaelyn, Chandler, Corey, and

http://albums.photopoint.com/j/AlbumIndex?u=254581 & a=1892774

[Guest guest]

Welcome, Suzanne and family!! My husband Neil and I are also from

Wisconsin. We are about an hour from Eau . It is great to have

you here, and I hope you are able to get the answers you need to your

questions.

Rose had the heel cord tenotomy done at around 6.5 months. This

procedure involved cutting the heel cord and recasting for 3 weeks. It

was a very minor surgery done with just local anesthetic. i take it

that when your son has the surgery, he will be under general anesthesia.

I don't really have any pointers for you regarding recovevery.

As for the bracing. Rose had only one clubfoot, and the bar and shoes

were used. I believe Dr. Ponseti says that is the most effective brace

they have used for maintaining the correction.

I'm sorry that you are having a tough time with your mother-in-law.

That would be very hard to deal with. I hope she starts to see that you

are just going a different route rather than disrespecting her.

Take care, and WELCOME again!

Joy

http://community.webtv.net/joybelle15/ROSESCLUBFOOTPAGE

[Guest guest]

Hi Suzanne,

Sorry about your troubles with your mother-in-law at a time like this. I'm

writing to reassure you about the anesthetic. I have a relative who's been

an anesthesiologist for 35 years and he said that even in babies the risks

are very, very low. Our daughter didn't require surgery so I can't help you

there but there are parents in this group who's children have and I'm sure

they will be giving you lots of support. We did face the prospect of surgery

and I remember feeling alot better when this relative told us that we " can

scratch the anesthetic off our worry list " . Best of luck and write as often

as you like, we're all here to support one another.

Dan

(unknown)

Hello. This is the first time I've written in this egroup, but I've

been reading your postings for a few weeks now, and I've found them

very helpful.

I guess I should introduce myself. My name is Suzanne and I live in

Wisconsin. My husband was born with both feet having

clubfoot, but his were very severe. One was so bad that they

practically had to take the foot off and put it back on in the proper

position. Because of this he has no ability to flex or rotate his

foot. My son is 16 weeks old and was born with a moderate

left clubfoot (nothing like his dad). He has been in a full leg cast

since he was two weeks old. His foot seems pretty straight now, but

the heel won't come down. Our orthapedic doctor wants to do a heel

cord lengthening and we have that scheduled for the 17th of August.

Now, here are my questions: First, our doctor seems to think that

after the heel cord surgery, that Sam will probably only need a few

more weeks of casting. Then he feels that a velcro fastening leg

brace and then normal shoe wear will be all he needs to hold the

correction. He doesn't think the bars will be necessary. Have other

people done this also? Are the bars only needed when the child has

two clubfeet?

My second question is concerning the surgery itself. A big part of

me is happy to get it over and done with, but then I'm also scared of

the surgery, mainly the anestetic. Have others had their child

operated on at four months, and if you have, do you have any

reccomendations on how to get through it?

Lastly, my mother-in-law and I have had a falling out of sorts

because had all of his work done at Shriners, so she thinks

Sam should go there too. We have had a lot of success with this

doctor, so we feel this is unecessary. Our doctor comes highly

reccomended. In fact, his own son had a clubfoot that he corrected.

I guess Shriners offers more comfort to her because that's what she

knows. I guess instead of a question, I'm looking for more support,

especially now that Sam's surgery is coming up, because I've all of a

sudden lost the support I did have because she doesn't agree with

us. Bless her heart, she's a good woman who has gone through a lot,

but when she feels she's right, there's no contradicting her. She

feels we're disrespecting her because we're not doing it her way.

Thanks for reading my awfully long posting. I'll be looking forward

to hearing your response.

[Guest guest]

Hello Suzanne,

My name is . My son was born with clubfeet. He had a heel cord

tenotomy done a week ago today. He just turned five months. First let me

tell you that it was totally nerve racking but the staff at Schneider's in

Long Island did a wonderful job. He only really complained about being

hungry, but he took the anesthetic great and experienced some discomfort the

first two nights that we noticed. is very active. So much so that he

did crack the casts on both feet two days after surgery.

His doctor feels that he will only require the brace and we are pleased. His

casts come off four weeks after surgery. His is scheduled for the 23 of

August. I will keep you posted on his progress if its any comfort.

Speak to you soon

[Guest guest]

,

Since you mentioned that your doctor is at Schneiders in Long Island,

I assume that Dr. or one of his associates is your pediatric

orthopedist. We are glad to welcome you and . We are also

happy to have Dr. using the Ponseti method on Long Island.

Please keep in us informed about how things are going.

and (3-17-99)

> Hello Suzanne,

>

> My name is . My son was born with clubfeet. He had a

heel cord

> tenotomy done a week ago today. He just turned five months. First

let me

> tell you that it was totally nerve racking but the staff at

Schneider's in

> Long Island did a wonderful job. He only really complained about

being

> hungry, but he took the anesthetic great and experienced some

discomfort the

> first two nights that we noticed. is very active. So much so

that he

> did crack the casts on both feet two days after surgery.

>

> His doctor feels that he will only require the brace and we are

pleased. His

> casts come off four weeks after surgery. His is scheduled for the

23 of

> August. I will keep you posted on his progress if its any comfort.

>

> Speak to you soon

[Guest guest]

pinkyz97@... wrote:

> My son had his tenotomy done by Dr. Ponseti at 4 1/2 months old

> and had local anesthetic. I think it depends on the doctor more than the age.

Ivy had her tenotomy with absolutely no anesthetic at all. We

just gave her a little whiskey and a bullet to bite on.

No seriously :-) we just gave her some ibuprofen. Sara turned her

head, but I watched as the surgeon slipped the scalpel into Ivy's

heel. He obviously had done quite a few of these percutaneous

tenotomies.

Masoner

[Guest guest]

>

> Ivy had her tenotomy with absolutely no anesthetic at all. We

> just gave her a little whiskey and a bullet to bite on.

>

LOL

Sara

[Guest guest]

,

How is your son doing now? Is he in the DBB?? My name is Kathy and our son

was born with a right clubfoot in October. We go to NYU in Manhattan seen

by Dr. feldman first now Dr. van Bosse. We are using the Ponseti method of

castings % and then followed by the heal cord releases then a cast for three

weeks, and now the DBB for 24 hours a day. My sons feet look great and it

has made a great improvement after the third Ponseti cast was used. Is your

child using this method also? Take Care, Kathy

[Guest guest]

Oh goodness - (((rivka))). I wish, wish, wish...so many things for you

right now. What are you doing for YOU??? You have to take care of

yourself, first and foremost. Don't lose sight of your own needs -

emotional and physical. It's ok to say " why me " just as it's ok to say

" what about me? "

Big hugs to you - k

[Guest guest]

Rivka,

Very well written! I could not have done better. The pics/album/journals,

whatever, great idea. I go through pictures every now and again, wishing I

had videotaped more before this outrage took over her. Mine, too, as yours,

beautiful, talented, artistic,

funny, dramatic, loving, compassionate. I miss her so much. It's almost

like when looking at past pictures, I'm somehow grieving a loss. We had a good

weekend, I told her I missed the " old " and I want her back. We talked

about the material sitting in the bag that we were to use to make her junior

prom dress, now come and gone. She's so sad she messed up. I think reality is(

finally) setting in with her. Now summer school for a month costing HER

$600, as I refuse to pay. I didnt put her there. So now each week her paycheck

gets handed over, and I control what she can have to get her through the week.

I still support her needs, so she doesnt need much. Now she's worrying also

about getting her license next month and having no car. Plus all that goes

with it, ie., insurance, regs., fuel, etc. Now I'm looking to go away for a

weekend, and cant leave her home. She wont go with us, so now the call to her

father. Been a rough 4 years. I wish you the best with your young one, rivka.

Take care.

Debbie

[Guest guest]

I identify with your problems with your daughter. You are lucky you are

finding out about this fairly early. We just heard about all this stuff,

and my daughter is 19--almost 20. She's at the point where we cannot force

her to go to a therapist. For quite awhile, she was insistant on going to

the ER sometimes several times a week. I finally either refused to go, or

just dropped her off and let her do her own thing. It got really old. She

now may see a psychiatrist, as her pcp decided he will only keep her on if

she sees one. She will allow us no access to info though. She says she is

taking care of it herself as she is over 18. Hope she does.

>

>Reply-To: WTOParentsOfBPs

>To: WTOParentsOfBPs

>Subject: (unknown)

>Date: Wed, 30 Jun 2004 17:24:15 -0000

>

>hazel, how old is your dtr? how did they rule out a physiologic sz

>disorder? did she have a sleep EEG? at what age did she start having

>problems? does she have rages?

>when you wrote how your dtr blames you for everything-and about how

>she felt you didnt respond the way she wanted after passing out-well

>THAT rang a bell with me. my dtr , has somatisized since she was 5 or

>6-when her symptomsa began(though she was not dx w/ BPD till 9 yo)

>she will b/c enraged because i didnt notice her " big toe " hurt and

>she was " limping " -i have no doubt at that moment she felt some kind

>of emotional pain, that she NEEDed my attention, and that she

>believed she was " injured " . but one of my many tasks with her, has

>been to teach her to KNOW what she is feeling and learn to express it

>in a way that she can get what she needs-and know what is resonable

>to expect. i KNOW-a huge undertaking.

>general to group:

>i found psych testing to be a life saver-i would not have probably

>stumbled onto my dtr's true dx-for years later-without it. and

>remember-a good neuropsych +/or psych test battery gives info about

>poss structural problems within the brain.

>one caution-it is all too easy, no matter how much we love them, to

>sometimes have a " hint " of a punitive motive for wanting them in tx

>or to have testing. i had to be REALLY honest with myself to see

>this. when my dtr rages, when she emotionally tears at my flesh, it

>is instinctive to want to defend oneself-BUT if therapy, going to ER,

>etc is ever(esp if it is consistently) " suggested " in response-or

>on " the heels " of a conflict-then it makes it so hard for the child

>to accept-kind of a " go to your room " . i find it much better to TRY

>to NEVER link therapy to an angry conflict we have.

> my dtr used to REFUSE to go to tx-we would have such ROWS! twice she

>turned the streering wheel of the car in front of ongoing traffic! i

>calmed myself down, then decided i was no longer going to walk her in

>to therapist's office, wait in waiting room and drive her home-by

>doing that she feels controlled, maybe even punished by going. now i

>drop her off-independently she has chosen the day and time and i pick

>her up after. NOW she is angry if she has to miss an appt. she not

>only feels grown up and " in charge " -it is at that time that she began

>to " own " her emotional illnes. ALSO this seeming small change allowed

>me to open up a dialogue about the fact that she is ill. now this is

>tricky and i would not recc. it w/o a great deal of thought. i

>believe it is only b/c she is so young(10) that maybe i have been

>able to do this-and it was AGAINST the advice of her tx. but it has

>made the biggest change. she KNOWS that her " mind " plays tricks on

>her, and she is young enough to consider that my way of seeing things

>may work out better-if she was truly adolescent i dont think i could

>do this. I would be the very LAST person she would trust or listen

>to. some psych say that BPD is like the worst teenager years x 100

>that never stop... i dont think this need be true, but i can see how

>incredibly different my situation in all likelihood will be when my

>dtr reaches puberty.

>to me it is like the bond i formed with my father-BEFORE he had

>become too senile for me to teach or alter what he does/how he feels-

>he lives with us and will be 98 this summer. with my dtr, BEFORE she

>become pubescent, i am trying to lay down some groundwork-our moral

>philosophy, our house rules, very specifics about what we expect from

>her in the different areas of her life-with the hope, just the HOPE

>that maybe once she is in the throws of puberty and her illness

>likely becomes much worse that MAYBE she will remember some of it-

>maybe she will even think some of it was HER idea and therefore NOT

>reject it. i hope. i have to-it is such hard work-with such uncertain

>an outcome-but what else can i do for her-otherwise i think i just

>couldnt bear the sadness in her eyes, the uncertainty she feels

>approaching each new situation. i dont think i knew sadness so well,

>until a couple of weeks ago-my dtr knew she would be starting a camp

>with new kids. she went into her room and closed the door-she NEVER

>does this if she is alone-she is terrified of being alone-so i

>listened at the door-she was practicing meeting people. she is

>sensitive about being so tiny (4'5 " and 52 lbs-she has growth delay

>syndrome)-so she was practicing how she would introduce herself, what

>Q she might ask the other girl(s) to get to know them, and being very

>hard on herself, calling herself " stupid " when she said

>something " wrong " . every fiber of her being, all her energy was

>invested in " getting it right " as if that would give her ANY

>assurance of not feeling rejected. down deep i know, she knows that

>her feeling rejected comes from the inside-BUT what can she do-how

>can she make her life better? but HOW she tries, how she tries.

>love, rivka

>

_________________________________________________________________

From ‘will you?’ to ‘I do,’ MSN Life Events is your resource for Getting

Married. http://lifeevents.msn.com/category.aspx?cid=married

[Guest guest]

My daughter has just been put on Lamictal. Has anyone had any experience with

this one?

She is also on Inderol-Propranolol, Effexor XR, Trazadone.

(unknown)

the recent posts i have found exciting!

first, amy- i have been out of the loop for a while with meds-have

not prescibed adderal since the late 80's and then we only

prescribed amphetamines for childhood ADD/ADHD. i had been pretty

much relegated to major affective disorders in my last practice-

adderal: amphetamine-lots of GI(gastrinyestinal) side effects, also

lots of bad reactions woth OTC(over the counter) meds-esp allergy

meds. s/e include: (in order of freq) loss of appetite, diarrhea,

stomache discomfort, nausea, then the amphetamine sx-restlessness,

tremor, headache-these seem to acclimate over time-theoretically

maintaining the " psychological " effects desired, but losing the

undesirable s/e-BUT as with all meds-it depends on the individual,

what else they are taking, age, etc. my personal experience with

RXing the drug is minimal-i think the adult kids of the group could

give you a better idea of the day tyo day..(sorry!), all SSRI's have

similar s/e profile-most prominent sx are GI-nausea, dyspepsia,

diarrhea-and in my experience they often lessen or go away, but in a

significant minority the nausea persoists. neuontin worries me. it

is the NEW panacea-like prozac was in the mid, late 80's when it was

introduced-that is when i was in early practice. it IS a wonderful

drug, so " clean " compared to the tricyclic anti-D(the only

mainstream tx for depression at the time, with lots of unpleasant

s/e) BUT at the beginning, it seemed everyone was using it for

everything, migraines, sexual dysfx, all sorts of neurologic

syndromes, pain-etc etc-only a few have been born out and they are

all " off label use " (NOT what the FDA approved it for, this is NOT

nec. bad-more than 90% of some meds RX is for " off label " use:

e.g.tegretol for bipolar disorder and pain syndromes. my experience

with neurontin is also limited-i know scientifically about it as a

drug, but my face to face feedback is limited. before i stopped

practice-in 1993, returning to ER nights in late '93 then in my twin

pregnancy 3/96 till 2/97-and then i was residency director having NO

direct patient responsibilty; then in 1999-2001, when i returned to

private practice until 8/2003. neurontin JUST began to be used in

widely in psychiatry circles where i practiced. i had , maybe half a

dozen patients who came to my practice already on it-for the most

part they felt it very helpful-anxiety, smoothing out bipolar affect

and for pain management. at that point, as now there is so much

hype, in my mind it is impossible to know what is wish fulfillment

(both the doctor and patient) and what will be born out after the

hoopla settles dowm. i have found, that like with prozac-for off

label uses, WHATEVER mechanism it hepls thru, what the hell, it

hekps, it is low risk-so use it. even if its main " help " is placebo,

so what? if the person feels better, they feel better, i found that

after almost 20 years in psych. that my role surely

included " cheerleader " as much as anything else. and i make no

apology for it-it was one of the many ways i feel that i helped. the

brain.mind is powerful beyond what science understands-and if we can

nudge it along to do some of its own " self-medicating " and healing-

isnt that for the best. sorry i dont have more hands on to tell you.

oh-one thing i do know-neurontin seems to have an unpredictable, but

significant bad reaction with antacids-so if your son has GI

distress and may take OTC antacids his shrink should know BEFORE he

RX neurontin. rivka

Send questions & concerns to WTOParentsOfBPs-owner . " Stop

Walking on Eggshells, " a primer for non-BPs can be ordered via 1-888-35-SHELL

(). For the table of contents, see http://www.BPDCentral.com