question

[Guest guest]

Thanks for the response. Did you still lose during your pregnancy? And

how long after you delivered did you reach goal?

[Guest guest]

,

I lost 91 lbs during my pregnancy. I am one of those lucky people who suffers

from morning or should I say all day sickness the ENTIRE 9 months. I had lost 68

lbs prior to concieving. I then lost 40 lbs in my 6 post-partum weeks after

having . The lst 22 lbs came off in the next 4 months after that. My

weight has been stable now for quite some time.

Re: Question

Thanks for the response. Did you still lose during your pregnancy?

And how long after you delivered did you reach goal?

Children are a blessing, and a gift from the Lord. -Psalm 127:3

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

[Guest guest]

Thanks for the information ladies. I am 4 months post op and just

found out 2 days ago that I am 6 weeks pregnant and have been

worried about it along with this surgery. Thanks for calming me

down!!

Kim

[Guest guest]

Thanks for the information ladies. I am 4 months post op and just

found out 2 days ago that I am 6 weeks pregnant and have been

worried about it along with this surgery. Thanks for calming me

down!!

Kim

[Guest guest]

I am 12.5 weeks, and I have felt like I am lactating as well. I

have to say, my chest looks impressive!!! Filled right out, but boy

do they HURT!!! Went from an A to a C in one week. I also found

that I am also getting more knee pain, and back aches as well.

Maybe the extra fat cushioned the aches? I don't know...Wasn't the

same with my first, before the WLS.

> I am 11 weeks pregnant with my fourth child, and have a question.

I don't post much, but I read everything. Thanks for all the great

advice.

>

> I have had SEVERE breast tenderness with this pregnancy. More so

than with any of my other children. My breasts hurt so bad I can't

even sleep at night! and they feel almost exactly like when I

weaned my kiddos. Very painful to the touch and even too much

movement!

>

> Also I have ligament pain a lot more than with any other kiddos.

>

> I am curious.. For those of you that have had both pre-WLS and

post WLS pregnancies. Do you seem to be more sensitive to issues

like these?

>

> Thanks again

>

> Korta

>

>

>

>

[Guest guest]

I am 12.5 weeks, and I have felt like I am lactating as well. I

have to say, my chest looks impressive!!! Filled right out, but boy

do they HURT!!! Went from an A to a C in one week. I also found

that I am also getting more knee pain, and back aches as well.

Maybe the extra fat cushioned the aches? I don't know...Wasn't the

same with my first, before the WLS.

> I am 11 weeks pregnant with my fourth child, and have a question.

I don't post much, but I read everything. Thanks for all the great

advice.

>

> I have had SEVERE breast tenderness with this pregnancy. More so

than with any of my other children. My breasts hurt so bad I can't

even sleep at night! and they feel almost exactly like when I

weaned my kiddos. Very painful to the touch and even too much

movement!

>

> Also I have ligament pain a lot more than with any other kiddos.

>

> I am curious.. For those of you that have had both pre-WLS and

post WLS pregnancies. Do you seem to be more sensitive to issues

like these?

>

> Thanks again

>

> Korta

>

>

>

>

[Guest guest]

My daughter went into the brace at 5.5 months old, so she wasn't near

walking yet. She did have the tenotomy at 5 months and had no

issues. Did your doctor tell you if she's planning on using local or

general anesthesia for the tenotomy? For older children, they often

use a general.

My suggestion to you is to ask your doctor to consult directly with

Dr. P or Dr. Morcuende about what bracing protocol to use for your

daughter's case. I would imagine that they would want her in the FAB

full-time for some period of time post-correction, but perhaps not

the full 3 months if she is indeed walking...maybe 2 months full time

and then 16-18 hours after that. It's always good to be

conservative! I hope she surprises you and doesn't mind the brace at

all once she's completely corrected.

Good luck!

& (3-16-00)

[Guest guest]

My daughter went into the brace at 5.5 months old, so she wasn't near

walking yet. She did have the tenotomy at 5 months and had no

issues. Did your doctor tell you if she's planning on using local or

general anesthesia for the tenotomy? For older children, they often

use a general.

My suggestion to you is to ask your doctor to consult directly with

Dr. P or Dr. Morcuende about what bracing protocol to use for your

daughter's case. I would imagine that they would want her in the FAB

full-time for some period of time post-correction, but perhaps not

the full 3 months if she is indeed walking...maybe 2 months full time

and then 16-18 hours after that. It's always good to be

conservative! I hope she surprises you and doesn't mind the brace at

all once she's completely corrected.

Good luck!

& (3-16-00)

[Guest guest]

My daughter went into the brace at 5.5 months old, so she wasn't near

walking yet. She did have the tenotomy at 5 months and had no

issues. Did your doctor tell you if she's planning on using local or

general anesthesia for the tenotomy? For older children, they often

use a general.

My suggestion to you is to ask your doctor to consult directly with

Dr. P or Dr. Morcuende about what bracing protocol to use for your

daughter's case. I would imagine that they would want her in the FAB

full-time for some period of time post-correction, but perhaps not

the full 3 months if she is indeed walking...maybe 2 months full time

and then 16-18 hours after that. It's always good to be

conservative! I hope she surprises you and doesn't mind the brace at

all once she's completely corrected.

Good luck!

& (3-16-00)

[Guest guest]

was 9 months when he got his second set of tenotomies. After the casting

we went 23 hours.. Was a lot easier then we expected. Plus there isn't a whole

lot these kids can do out of the shoes that they can't do in them. I sometimes

think he's more comfortable in the shoes then out.. Isn't it funny?

-------------- Original message --------------

This may have been discussed previously but since my brain is often

befuddled lately, I will ask again.

For the parents that began Ponseti treatment late, how long per day

did your children wear the DBB after the tenotomy? kelsey is

scheduled for her tenotomy on Friday and will turn 1 while wearing

that cast. She is very close to walking and if she has to wear those

shoes 23 hours a day, my life will be unbearable. She hates them

anyway and that is just from when she was wearing them at night. Does

everyone else that has this brace have big bolts on the bottom? Dr.

Von Stein has not yet looked at the DBB that we have since it was

prescribed by Dr #1 but I do not see how Kelsey could possibly walk in

these shoes with those big bolts on the bottoms of her feet.

Also, on the tenotomy, does it go as easily and painlessly for older

children as opposed to infants?

Thanks in advance for any information.

[Guest guest]

was 9 months when he got his second set of tenotomies. After the casting

we went 23 hours.. Was a lot easier then we expected. Plus there isn't a whole

lot these kids can do out of the shoes that they can't do in them. I sometimes

think he's more comfortable in the shoes then out.. Isn't it funny?

-------------- Original message --------------

This may have been discussed previously but since my brain is often

befuddled lately, I will ask again.

For the parents that began Ponseti treatment late, how long per day

did your children wear the DBB after the tenotomy? kelsey is

scheduled for her tenotomy on Friday and will turn 1 while wearing

that cast. She is very close to walking and if she has to wear those

shoes 23 hours a day, my life will be unbearable. She hates them

anyway and that is just from when she was wearing them at night. Does

everyone else that has this brace have big bolts on the bottom? Dr.

Von Stein has not yet looked at the DBB that we have since it was

prescribed by Dr #1 but I do not see how Kelsey could possibly walk in

these shoes with those big bolts on the bottoms of her feet.

Also, on the tenotomy, does it go as easily and painlessly for older

children as opposed to infants?

Thanks in advance for any information.

[Guest guest]

Trust me, you are not bringing the board down, as we all know how

you feel! There were times (are times, I should say!) when I just

wanted to fling 's shoes across the room into the trash can. I

hate those ^@*%((@ things. But, then the moment passes, and I

think " We will get through this! " It can't last forever, that's the

good part. In the meantime, I just try to enjoy my son's babyhood

and realize that he'll never be this age again. And, fortunately,

he'll never remember it. He'll just have some really good stories to

tell his friends someday.

My son is the third generation in my family to have this deformity.

Sometimes I wish that clubfoot just didn't exist! That he would wake

up in the morning and it would go away, that I could just put him to

bed at night or for naps without having to think, " Oh crap, I have

to wrestle him to the ground again to put those shoes on! " But, we

know as moms this is just something we do. I knew that if I didn't

do something, it might mean relapse, although sometimes even if you

are very diligent it can still relapse. That's the hard part, going

back to the doctor's only to be told your child needs a surgical

procedure when you hoped it wouldn't have to happen. In our case, we

knew it would - we were discussing it on the way over, so I wasn't

surprised. I just wanted it over with. And before I knew it, we were

in and out of the hospital and now that's been five months ago. It

doesn't seem possible. And in another 20 years we'll all say, " Oh,

do you remember those AWFUL shoes you used to wear? THat's been so

long ago! "

Anyway, I would think that since she is so close to walking already,

that the doctor would prescribe reduced wear from the start. Usually

when they're younger they're working up to the walking stage and

then wear decreases, so since she's already there maybe it won't be

so bad. I know, I nearly died when I saw those shoes: " Oh, look how

small and cute they are! " Then I saw the bar and nearly keeled over.

For some reason, I never imagined what it must look like.

Good luck and keep us posted!

11.23.03

>

> This may have been discussed previously but since my brain is often

> befuddled lately, I will ask again.

> For the parents that began Ponseti treatment late, how long per day

> did your children wear the DBB after the tenotomy? kelsey is

> scheduled for her tenotomy on Friday and will turn 1 while wearing

> that cast. She is very close to walking and if she has to wear

those

> shoes 23 hours a day, my life will be unbearable. She hates them

> anyway and that is just from when she was wearing them at night.

Does

> everyone else that has this brace have big bolts on the bottom?

Dr.

> Von Stein has not yet looked at the DBB that we have since it was

> prescribed by Dr #1 but I do not see how Kelsey could possibly

walk in

> these shoes with those big bolts on the bottoms of her feet.

>

> Also, on the tenotomy, does it go as easily and painlessly for

older

> children as opposed to infants?

>

> Thanks in advance for any information.

[Guest guest]

LOL *Raises hand* Ive thrown the shoes across the room before!

Anyone else?

Lori

>

> Trust me, you are not bringing the board down, as we all know how

> you feel! There were times (are times, I should say!) when I just

> wanted to fling 's shoes across the room into the trash can. I

> hate those ^@*%((@ things. But, then the moment passes, and I

> think " We will get through this! " It can't last forever, that's the

> good part. In the meantime, I just try to enjoy my son's babyhood

> and realize that he'll never be this age again. And, fortunately,

> he'll never remember it. He'll just have some really good stories

to

> tell his friends someday.

>

> My son is the third generation in my family to have this deformity.

> Sometimes I wish that clubfoot just didn't exist! That he would

wake

> up in the morning and it would go away, that I could just put him

to

> bed at night or for naps without having to think, " Oh crap, I have

> to wrestle him to the ground again to put those shoes on! " But, we

> know as moms this is just something we do. I knew that if I didn't

> do something, it might mean relapse, although sometimes even if you

> are very diligent it can still relapse. That's the hard part, going

> back to the doctor's only to be told your child needs a surgical

> procedure when you hoped it wouldn't have to happen. In our case,

we

> knew it would - we were discussing it on the way over, so I wasn't

> surprised. I just wanted it over with. And before I knew it, we

were

> in and out of the hospital and now that's been five months ago. It

> doesn't seem possible. And in another 20 years we'll all say, " Oh,

> do you remember those AWFUL shoes you used to wear? THat's been so

> long ago! "

>

> Anyway, I would think that since she is so close to walking

already,

> that the doctor would prescribe reduced wear from the start.

Usually

> when they're younger they're working up to the walking stage and

> then wear decreases, so since she's already there maybe it won't be

> so bad. I know, I nearly died when I saw those shoes: " Oh, look how

> small and cute they are! " Then I saw the bar and nearly keeled

over.

> For some reason, I never imagined what it must look like.

>

> Good luck and keep us posted!

>

>

> 11.23.03

>

[Guest guest]

> They are using a general anesthetic. She said that

> with older children, they did not like to take the

> risk of her moving and not cooperating. I am having a

> very bad day dealing with all of this today so my

> negativity is really getting the best of me. I am so

> sick of dealing with all of this and continuing to put

> Kelsey through all of this. I feel like I have done

> nothing but torture her since her birth. She has gone

> through all of these casts, a disatrous turn with an

> AFO brace that I would like to burn, another nightmare

> with this DBB brace and now we are starting it all

> again. You would think that with the advances in

> modern medicine that someone could just fix it. Then,

> we have had a few scares with her kidney that she has

> had to undergo a zillion tests for.

> I am sorry but I guess that it has all just

> overwhelmed me today I am freaked out about the

> general anesthesia this week. I don't know how I give

> my precious baby's life into the hands of a virtual

> stranger. It has all just gotten the best of me today

> and I don't really have anyone to talk to about it

> that understands. My husband doesn't spend as much

> time dealing with it all as I do and he doesn't

> understand as well as I know you all do. Sorry to

> bring the board down. Everyone else is always so

> upbeat sometimes I feel like such a failure for not

> being able to handle it all better for Kelsey.

>

> Thanks for all of the information that everyone has

> given me. It does help to know that I am not alone.

Jen,

We also started late. My son will be a year old in three weeks and

he's on his fourth set of casts, with four more to go. Right before

we went back in the casts he was pulling himself up. Now he wants to,

I can see him trying to, but he can't stand with the casts the way

they are. I understand how you're feeling, my son will also have

general anesthesia if he needs a tenotomy and it scares me to death.

However, I do know that at some point this will all be in the past,

will be running and playing and I'll know that I gave him the

best treatment that was available. Hang in there, there are tough

days and easier days.

and (11/10/03 born with severe bilateral clubfeet)

[Guest guest]

Youre not alone. Ive had my bad days. When Drew was out to sea and

the baby was crying non stop for hours on end....I had NO idea how Id

get thru it... alone. *shrug* But I did. Just take a deep breath,

square your shoulders and get back in there and fight. You might not

believe it now, but you were chosen for this b/c you CAN handle it.

Im not a big fan of cyber (((hugs)) but I'll keep you and the bb in

my thoughts and prayers.

Lori

> > They are using a general anesthetic. She said that

> > with older children, they did not like to take the

> > risk of her moving and not cooperating. I am having a

> > very bad day dealing with all of this today so my

> > negativity is really getting the best of me. I am so

> > sick of dealing with all of this and continuing to put

> > Kelsey through all of this. I feel like I have done

> > nothing but torture her since her birth. She has gone

> > through all of these casts, a disatrous turn with an

> > AFO brace that I would like to burn, another nightmare

> > with this DBB brace and now we are starting it all

> > again. You would think that with the advances in

> > modern medicine that someone could just fix it. Then,

> > we have had a few scares with her kidney that she has

> > had to undergo a zillion tests for.

> > I am sorry but I guess that it has all just

> > overwhelmed me today I am freaked out about the

> > general anesthesia this week. I don't know how I give

> > my precious baby's life into the hands of a virtual

> > stranger. It has all just gotten the best of me today

> > and I don't really have anyone to talk to about it

> > that understands. My husband doesn't spend as much

> > time dealing with it all as I do and he doesn't

> > understand as well as I know you all do. Sorry to

> > bring the board down. Everyone else is always so

> > upbeat sometimes I feel like such a failure for not

> > being able to handle it all better for Kelsey.

> >

> > Thanks for all of the information that everyone has

> > given me. It does help to know that I am not alone.

>

>

>

> Jen,

>

> We also started late. My son will be a year old in three weeks and

> he's on his fourth set of casts, with four more to go. Right before

> we went back in the casts he was pulling himself up. Now he wants

to,

> I can see him trying to, but he can't stand with the casts the way

> they are. I understand how you're feeling, my son will also have

> general anesthesia if he needs a tenotomy and it scares me to

death.

> However, I do know that at some point this will all be in the past,

> will be running and playing and I'll know that I gave him the

> best treatment that was available. Hang in there, there are tough

> days and easier days.

>

> and (11/10/03 born with severe bilateral clubfeet)

[Guest guest]

Youre not alone. Ive had my bad days. When Drew was out to sea and

the baby was crying non stop for hours on end....I had NO idea how Id

get thru it... alone. *shrug* But I did. Just take a deep breath,

square your shoulders and get back in there and fight. You might not

believe it now, but you were chosen for this b/c you CAN handle it.

Im not a big fan of cyber (((hugs)) but I'll keep you and the bb in

my thoughts and prayers.

Lori

> > They are using a general anesthetic. She said that

> > with older children, they did not like to take the

> > risk of her moving and not cooperating. I am having a

> > very bad day dealing with all of this today so my

> > negativity is really getting the best of me. I am so

> > sick of dealing with all of this and continuing to put

> > Kelsey through all of this. I feel like I have done

> > nothing but torture her since her birth. She has gone

> > through all of these casts, a disatrous turn with an

> > AFO brace that I would like to burn, another nightmare

> > with this DBB brace and now we are starting it all

> > again. You would think that with the advances in

> > modern medicine that someone could just fix it. Then,

> > we have had a few scares with her kidney that she has

> > had to undergo a zillion tests for.

> > I am sorry but I guess that it has all just

> > overwhelmed me today I am freaked out about the

> > general anesthesia this week. I don't know how I give

> > my precious baby's life into the hands of a virtual

> > stranger. It has all just gotten the best of me today

> > and I don't really have anyone to talk to about it

> > that understands. My husband doesn't spend as much

> > time dealing with it all as I do and he doesn't

> > understand as well as I know you all do. Sorry to

> > bring the board down. Everyone else is always so

> > upbeat sometimes I feel like such a failure for not

> > being able to handle it all better for Kelsey.

> >

> > Thanks for all of the information that everyone has

> > given me. It does help to know that I am not alone.

>

>

>

> Jen,

>

> We also started late. My son will be a year old in three weeks and

> he's on his fourth set of casts, with four more to go. Right before

> we went back in the casts he was pulling himself up. Now he wants

to,

> I can see him trying to, but he can't stand with the casts the way

> they are. I understand how you're feeling, my son will also have

> general anesthesia if he needs a tenotomy and it scares me to

death.

> However, I do know that at some point this will all be in the past,

> will be running and playing and I'll know that I gave him the

> best treatment that was available. Hang in there, there are tough

> days and easier days.

>

> and (11/10/03 born with severe bilateral clubfeet)

[Guest guest]

Hi Jenni,

had her second tenotomy at 11 months after switching to Dr

Herzenberg in Baltimore. She also turned one during the 3 week cast

that followed. She wears the DBB 23/7. I do not know when her

hours will decrease. I know that Dr H said that, with the older

babies, he does not always do the full 3 months like with the

infants because they are walking age. Except for a rough couple of

days when she frist got the cast off, has had no problem

with the DBB on fulltime. Our DBB has the bolts on the bottom.

is able to hold your hands or a push toy and waddle walk for

a short bit. I have heard parents here say that their child walks

in the DBB.

As for the tenotomy -- had her second one in the OR under

general anesthesia instead of local. She had no problems for the 3

weeks following it with her cast. When the cast came off she took

about a week for her foot and leg to desensitize. We have been fine

ever since!

Marilouise

9/9/03, LCF, DBB 23/7

Owen and 3/20/99

>

> This may have been discussed previously but since my brain is often

> befuddled lately, I will ask again.

> For the parents that began Ponseti treatment late, how long per day

> did your children wear the DBB after the tenotomy? kelsey is

> scheduled for her tenotomy on Friday and will turn 1 while wearing

> that cast. She is very close to walking and if she has to wear

those

> shoes 23 hours a day, my life will be unbearable. She hates them

> anyway and that is just from when she was wearing them at night.

Does

> everyone else that has this brace have big bolts on the bottom?

Dr.

> Von Stein has not yet looked at the DBB that we have since it was

> prescribed by Dr #1 but I do not see how Kelsey could possibly

walk in

> these shoes with those big bolts on the bottoms of her feet.

>

> Also, on the tenotomy, does it go as easily and painlessly for

older

> children as opposed to infants?

>

> Thanks in advance for any information.

[Guest guest]

Hi,

Not sure if this will help you, but Lhea, 5 months old, is now in shoes

and she began at 4 months with Dr. Ponseti. From my understanding, the children

get used to the shoes. They not only learn to walk, crawl and be active in

them, but they become adjusted to them fairly quickly as well as asking for them

when they go to sleep.

pudgemuffin_2003@...> wrote:

Trust me, you are not bringing the board down, as we all know how

you feel! There were times (are times, I should say!) when I just

wanted to fling 's shoes across the room into the trash can. I

hate those ^@*%((@ things. But, then the moment passes, and I

think " We will get through this! " It can't last forever, that's the

good part. In the meantime, I just try to enjoy my son's babyhood

and realize that he'll never be this age again. And, fortunately,

he'll never remember it. He'll just have some really good stories to

tell his friends someday.

My son is the third generation in my family to have this deformity.

Sometimes I wish that clubfoot just didn't exist! That he would wake

up in the morning and it would go away, that I could just put him to

bed at night or for naps without having to think, " Oh crap, I have

to wrestle him to the ground again to put those shoes on! " But, we

know as moms this is just something we do. I knew that if I didn't

do something, it might mean relapse, although sometimes even if you

are very diligent it can still relapse. That's the hard part, going

back to the doctor's only to be told your child needs a surgical

procedure when you hoped it wouldn't have to happen. In our case, we

knew it would - we were discussing it on the way over, so I wasn't

surprised. I just wanted it over with. And before I knew it, we were

in and out of the hospital and now that's been five months ago. It

doesn't seem possible. And in another 20 years we'll all say, " Oh,

do you remember those AWFUL shoes you used to wear? THat's been so

long ago! "

Anyway, I would think that since she is so close to walking already,

that the doctor would prescribe reduced wear from the start. Usually

when they're younger they're working up to the walking stage and

then wear decreases, so since she's already there maybe it won't be

so bad. I know, I nearly died when I saw those shoes: " Oh, look how

small and cute they are! " Then I saw the bar and nearly keeled over.

For some reason, I never imagined what it must look like.

Good luck and keep us posted!

11.23.03

>

> This may have been discussed previously but since my brain is often

> befuddled lately, I will ask again.

> For the parents that began Ponseti treatment late, how long per day

> did your children wear the DBB after the tenotomy? kelsey is

> scheduled for her tenotomy on Friday and will turn 1 while wearing

> that cast. She is very close to walking and if she has to wear

those

> shoes 23 hours a day, my life will be unbearable. She hates them

> anyway and that is just from when she was wearing them at night.

Does

> everyone else that has this brace have big bolts on the bottom?

Dr.

> Von Stein has not yet looked at the DBB that we have since it was

> prescribed by Dr #1 but I do not see how Kelsey could possibly

walk in

> these shoes with those big bolts on the bottoms of her feet.

>

> Also, on the tenotomy, does it go as easily and painlessly for

older

> children as opposed to infants?

>

> Thanks in advance for any information.

[Guest guest]

P.S. My advice on the TAL, is make sure that your older child is numb - not

that they don't make sure of it, but you want to make sure. If an older child

feels anything of the tenotomy, it can be hard for you to interact with them.

Raek and Jennipher Assria assrias@...> wrote:Hi,

Not sure if this will help you, but Lhea, 5 months old, is now in shoes

and she began at 4 months with Dr. Ponseti. From my understanding, the children

get used to the shoes. They not only learn to walk, crawl and be active in

them, but they become adjusted to them fairly quickly as well as asking for them

when they go to sleep.

pudgemuffin_2003@...> wrote:

Trust me, you are not bringing the board down, as we all know how

you feel! There were times (are times, I should say!) when I just

wanted to fling 's shoes across the room into the trash can. I

hate those ^@*%((@ things. But, then the moment passes, and I

think " We will get through this! " It can't last forever, that's the

good part. In the meantime, I just try to enjoy my son's babyhood

and realize that he'll never be this age again. And, fortunately,

he'll never remember it. He'll just have some really good stories to

tell his friends someday.

My son is the third generation in my family to have this deformity.

Sometimes I wish that clubfoot just didn't exist! That he would wake

up in the morning and it would go away, that I could just put him to

bed at night or for naps without having to think, " Oh crap, I have

to wrestle him to the ground again to put those shoes on! " But, we

know as moms this is just something we do. I knew that if I didn't

do something, it might mean relapse, although sometimes even if you

are very diligent it can still relapse. That's the hard part, going

back to the doctor's only to be told your child needs a surgical

procedure when you hoped it wouldn't have to happen. In our case, we

knew it would - we were discussing it on the way over, so I wasn't

surprised. I just wanted it over with. And before I knew it, we were

in and out of the hospital and now that's been five months ago. It

doesn't seem possible. And in another 20 years we'll all say, " Oh,

do you remember those AWFUL shoes you used to wear? THat's been so

long ago! "

Anyway, I would think that since she is so close to walking already,

that the doctor would prescribe reduced wear from the start. Usually

when they're younger they're working up to the walking stage and

then wear decreases, so since she's already there maybe it won't be

so bad. I know, I nearly died when I saw those shoes: " Oh, look how

small and cute they are! " Then I saw the bar and nearly keeled over.

For some reason, I never imagined what it must look like.

Good luck and keep us posted!

11.23.03

>

> This may have been discussed previously but since my brain is often

> befuddled lately, I will ask again.

> For the parents that began Ponseti treatment late, how long per day

> did your children wear the DBB after the tenotomy? kelsey is

> scheduled for her tenotomy on Friday and will turn 1 while wearing

> that cast. She is very close to walking and if she has to wear

those

> shoes 23 hours a day, my life will be unbearable. She hates them

> anyway and that is just from when she was wearing them at night.

Does

> everyone else that has this brace have big bolts on the bottom?

Dr.

> Von Stein has not yet looked at the DBB that we have since it was

> prescribed by Dr #1 but I do not see how Kelsey could possibly

walk in

> these shoes with those big bolts on the bottoms of her feet.

>

> Also, on the tenotomy, does it go as easily and painlessly for

older

> children as opposed to infants?

>

> Thanks in advance for any information.

[Guest guest]

I have had spots on liver and spleen which MRI showed

to be simply cysts.

sohay

--- Joan joanloucks@...> wrote:

> The onthacoligist said there were spots on my liver,

> he said the chemo

> may cause them. Has anyone here had spots on the

> liver and they were

> not cancer.

>

> I also have the numb finger tips and feet. My chemo

> was finished in

> July of this year.

>

> The reason I want to know because I'm going to a

> specialist for a take

> down.

>

> In my case it's more than a take down. I had

> gangerene and lost a

> whole lot more colon (sigmoid and half the

> transverse), plus some

> small intestine an ovary and my appendix. I had the

> original surgery

> in Aug 04 the gangerene surgery in Sep 04. The

> regular surgeon said

> the take down would be as bad as the gangerene

> surgery was and I came

> out of that one in a wheelchair and walker for

> months.

>

> Joan

>

>

>

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

I have had spots on liver and spleen which MRI showed

to be simply cysts.

sohay

--- Joan joanloucks@...> wrote:

> The onthacoligist said there were spots on my liver,

> he said the chemo

> may cause them. Has anyone here had spots on the

> liver and they were

> not cancer.

>

> I also have the numb finger tips and feet. My chemo

> was finished in

> July of this year.

>

> The reason I want to know because I'm going to a

> specialist for a take

> down.

>

> In my case it's more than a take down. I had

> gangerene and lost a

> whole lot more colon (sigmoid and half the

> transverse), plus some

> small intestine an ovary and my appendix. I had the

> original surgery

> in Aug 04 the gangerene surgery in Sep 04. The

> regular surgeon said

> the take down would be as bad as the gangerene

> surgery was and I came

> out of that one in a wheelchair and walker for

> months.

>

> Joan

>

>

>

>

__________________________________

Yahoo! Mail - PC Magazine Editors' Choice 2005

http://mail.yahoo.com

[Guest guest]

Marla, I'm curious about your symptoms. Does your activity have any effect? I went off the Lyrica I was taking for neuropathy, because Baughman & my neuro both thought part of my memory/mental stuff could be med-related. My neuro thought the Lyrica was the likeliest, so I tapered off it. Starting about 4 days after the last dose, last Saturday, I started feeling more tired than usual. On Sunday I slept all day, missed church, didn't eat, go to the bathroom, my daughter couldn't get me to wake up. I vaguely remember talking to her, so I wasn't unconscious, I just didn't want to wake up. Since then I've been totally exhausted, get lightheaded if I'm not lying flat. If I sit up for more than a few minutes, I also get a pounding headache. I'm hot & cold, but no fever. My blood pressure is okay. I don't have any nausea, cold symptoms, etc. I'm eating fine. To use the computer, I'm in a camp recliner with my head almost flat & my feet up in the sky.

I've been off the MTX for 3 weeks. Baughman said it would probably take 2-3 months before I would feel worse if the sarc was active. So I have to wonder if this could be sarc. When I first started the systemic stuff back in 2000, I had the fatigue, fever & chills, & poor appetite, but no dizziness. The only headache I had then was in my left eye; this headache is the whole top of my head. I haven't had a fever when I've checked it, but I get real hot & sweaty, then freezing cold, then hot. I need to wash my sheets; I told Sam that I'm starting to smell like a White Castle. (For those who are unaware, White Castles are the little square hamburgers cooked with onions; they smell kind of like armpits. I love 'em! I just don't want to smell like them.)

Well, I'm tired. Finally got through all the messages. I let it go for two days; big mistake. I hope I responded to everyone; if I missed something, I apologize.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: QuestionDate: Wed, 01 Mar 2006 09:28:53 -0800

I haven't posted much lately, having some strange things going on and wondered if anyone of you have had this too. I'm going off the Neurontin, by 100mgs per dose 300mgs/day, every other week. The nerve pain I went on it for, is not coming back, however I am having headaches, body aches, diarrhea, night sweats but not every night, and every emotional, as I mentioned before, I went of my Effexor months ago. I decided to go to my PCP, and he said it's either hormones, or going off the effoxor, so he put me on welburtrin, even though I'm trying to get off meds. Only now I continue to have all the other symptoms, and insomnia, which makes the other symptoms worse during the day, he told me I could increase my Lorazapam to help sleep, but that doesn't help at night, and I feel more drugged in the am. I want to go off the meds, not add more meds to help me go off the old ones. I'm wondering if I should just shut up and put up for awhile and it will get better? One thing I do know is that I need my sleep, I don't sleep but just nights now, so can't afford to give up that sleep time. So what do you'll think, besides I'm crazy I already know that? :)By the way, you are a funny group, every thought of taking your comedy on the road, it could be for Sarcoid awareness???? Love to all, Marla --

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hello out there in lala land. I have a questoin for the medical folks

out there. Have you ever heard of tendonitis of the clavicle? I wnet

to the doc today about the swelling on my chest today and he told me

that he thought it was was tendonitis of the clavicle. I am so inflamed

in my joints right now; I just had my wrist injected in two places and

my ankle and knees are bothering me. Does this seem significant to

anyone but me? I guess I just need some validation right now that I am

not nuts.

Thanks for being my friends and I am praying for all of you. By the

way, from Norfolk where are you and how are you? Check in so we

know you are ok.

Terri G.

[Guest guest]

TY

[Guest guest]

TY