Re: a few questions

[Guest guest]

Thank you soo much for taking the time to answer my questions! I am

sure I will have more. Up to this point, has seen a GI and geneticist.

The GI has been her main doctor. We just moved from GA to NC 3 weeks ago and

have only seen this ped that has done all this! Funny, it took 5 1/2 yrs to

get here and only took this ped 2 weeks. She is making the referral to a

pulminologist. And she said she will put her on pancrease. She was on

Creon-10 for 2 months and gained 3 lbs! But the GI in GA stopped it b/c he

was lost for a reason to give it. I am so glad I moved!

Thanks again!

[Guest guest]

DEAR NICOLE, you will receive answers here, BUT, if you send me your regular

mail address, I will send you some literature(very easy reading-not heavy

stuff) and some great tapes..short but real. everyone can view them and the

kids also love them. i will be at an adult conf thru Sunday but back at the

office on TUESDAY .I'll send to you then. No charge.

MY granddaughter has CF .She is 16 almost 17 -AUGUST 5th. She is 5'10 " tall.

very strong. Runs cross country & is state ranked...Basketball team MVP and

goalie on her school soccer team....Plus A+ honor student ,will now be a

senior, getting ready for college. She picked Appalachian's) State Univ. in

N.C. (her dad & mom went there:):)

She is working some of this summer at the local bank..will do 2 weeks

habitat

work with her church youth group. and also go to a 1week basketball camp.

She uses the vest with her pulmozyme once a day...evening.-She is on the

trampoline every time she gets out of her car(a jeep) and any other time she

walks by it (in yard beside the drive)....she hasn't ever been in hospital

or on IV's, except at birth with a meconium iliues and has been fine since.

She uses 5-7 MT-16 Pancrease at all meals & a few with snacks.We know that

at any time she will be in a spot that she may get an infection that will

require Iv's or special meds, BUT, they are there for her AND more good

stuff is always being discovered. YES, Many advances are on their way. How

long will she live.Well, you know. I don't think anyone can answer that and

i cant tell you who can on this list as we don't discuss religion her. BUT,

I could die tomorrow.. & I don't have CF. I am not going to have that as a

piece of data I

need to help my granddaughter live a normal life. I have 10 grandchildren

and 5 children .I NEVER thought about them dying. Always about the wonderful

today's and tomorrows, so then, I will have lots of great yesterdays to

remember.

I will hold you and your precious family in my thoughts,

Love & HUGS,

GrandmomBEV

A few questions

Hi again.

I have a few questions and have had no luck finding the answers on the net.

What is the life span? What are the treatments? How do they find which

mutation my child has? What kind of doctors will she need to see? She

doesn't

have lung problems so does this mean she has a mild case of it? Is it going

to get worse? Is there anything I should be cautious about? Does CF carry

other syndrome features? ( she has a few) Should I treat her like my other

children or be more protective? Will she need special treatment in school?

The list goes on and on. Please someone help me figure this out.

Thanks,

[Guest guest]

I have booklets and pamphlets to answer all these also. if I have your

address. these folks can also give their stories and you will see just how

varied CF really is. no 2 stories will be alike.

Some treatments are with nebulizers..Iv's , percussors/vest, nutritionals

supplements. enzymes. TREAT her as you do the others. away from sick people,

infections, contagious disease,smoke of any kind, mold, mildew. Anything

that would make most people ill, may make her sick too...and " possibly "

sicker.

If at all possible attend a CFCENTER (at some hospital and generally with a

school /university in the states. although there are many who do NOT go to

CF Centers.

school will have to allow her to take her enzymes at lunch time....Extra

drinks/snacks as wanted /needed(like at P.E., as she is older, recess as a

wee one, etc.If not feeling well excuse from running , playing tiring games,

etc.Allowing bathroom privileges without having to raise hand, etc to bring

more notice to it , etc. In general ..let her be normal.... " You gotta go,

you gotta go " & that is generally

part of CF too.I think maybe I will let others add to , correct, explain

better , what I have said here.:) have a great holiday weekend.

LOVE & HUGS, grandmomBEV

A few questions

Hi again.

I have a few questions and have had no luck finding the answers on the net.

What is the life span? What are the treatments? How do they find which

mutation my child has? What kind of doctors will she need to see? She

doesn't

have lung problems so does this mean she has a mild case of it? Is it going

to get worse? Is there anything I should be cautious about? Does CF carry

other syndrome features? ( she has a few) Should I treat her like my other

children or be more protective? Will she need special treatment in school?

The list goes on and on. Please someone help me figure this out.

Thanks,

[Guest guest]

Hi ,

Welcome to our list. I've tried to give some answers to your

questions below:

> Hi again.

> I have a few questions and have had no luck finding the answers on

the net.

> What is the life span?

People can die from cf complications anywhere from birth to 70+ years

old. The average life expectancy right now in the U.S. is 32 years,

but there is a huge variation, and new treatments come out often. CF

has a lot of researchers working, so there is cause to be optimistic.

What are the treatments?

Treatments vary from country to country and clinic to clinic. My son

gets aerosols and the vest twice a day (the vest is a physical

therapy machine to loosen mucus in the lungs), ADEKs vitamins once

daily, and has to take enzyme capsules with food that has fat or

protein in it. It may seem overwhelming at first, but it gets to be

a routine, and trust me, it could be much worse.

How do they find which

> mutation my child has?

There is a genetic test that can be done by taking a swab sample from

the inside of your child's cheek. They send it away, and if the

mutations are of the more common ones, the results will show what

they are. There are 900+ mutations, but most clinics test for the 70

most common ones, so if it comes back unknown, it's probably just one

of the rarer mutations.

What kind of doctors will she need to see?

She will be referred to a cystic fibrosis clinic, and will see either

a pediatric pulmonologist, or (more rarely) a pediatric

gastroenterologist. You will also meet the " cf team " there, which

consists of a nurse, dietician/nutritionist, social worker,

respiratory therapist, and maybe others. When you go to a clinic

appointment, don't plan to be out of there in fifteen minutes!

She doesn't

> have lung problems so does this mean she has a mild case of it?

You could ask her doctor if he thinks her case is mild or severe, but

he likely won't classify it that way. Most cf fatallities are from

respiratory disease, so not having lung problems is definately a plus.

Is it going

> to get worse?

Actually, if she's had a lot of health problems, a diagnosis and

treatment plan will probably soon make an improvement.

Is there anything I should be cautious about? Does CF carry

> other syndrome features? ( she has a few)

You should get the book, " Cystic Fibrosis A Guide for Patient and

Family " by M. Orenstein. Your clinic will likely give you a

copy of this book, but until then, check one out from a local

library. MOST of what you need to know can be found in it.

Should I treat her like my other

> children or be more protective?

That's up to you. My opinion is to treat her the same as anyone

else. If you smother her with protection, she might resent it later,

and your other children might, too.

Will she need special treatment in school?

She'll have to take enzymes in school when she eats, and if she

coughs a lot, you might want to mention this to the teachers, so they

know she isn't contagous, and she may need to get permission to go to

the bathroom anytime, without waiting for breaks.

I've chosen to homeschool my children, so I will avoid this worry

when my 3 year old with cf is school age.

Daycares and schools are usually germ havens (there are some that are

not), so you might want to be extra stringent about getting her into

excellent hand-washing habits now.

> The list goes on and on. Please someone help me figure this out.

> Thanks,

>

>

Feel free to come to the list with any questions and concerns. It's

not the end of the world. You'll get through this period and move

on, and the things that you have to do for your child's health will

become second nature to you.

And you're not alone!

~

mommy to 3, 1 wcf

[Guest guest]

:

Wow, I hear the panic in your voice.

First, calm down or you won't see YOUR next birthday

. You came to the right board for support and

information. There are no cookie cutter answers for

any of your questions. The disease creates a lifestyle

adjustment for all involved.

But here are the quick answers.

No answer to life span. I was diagnosed at 16 and I'm

still kicking at 48. My brother Steve didn't make it

this far. See, no answer even inside a family.

Treatments vary with patients from few drugs to lots

of physical therapy and drugs.

Genetic mutations according to what I read does not

correlate to predicting patient health.

The lung involvement is the most complicated and takes

the most energy to deal with.

Any disease gets worse, its just a matter of time and

degree. There is NO predictable curve to put your

child on. I wish I had a curve myself but the docs

tell me I should no better by now. This is what

happens when your an enginner. The human body may be

the most efficent energy burning machine, but its

totally unprdictable. Thing " A " doesnt always casue

thing " B " to occur.

CF has lots of subtle and serious nuances.

Treat all your children with love and respect.

What will happen during her school years is

unpredicable at this point.

There is much to learn. It will all come when you need

it. Just keep your yourelf open to discovery.

I've found that panicing about the future is a futile

effort. Deal with today and think of tomorrow a little

bit.

Regards... Al

--- nic77727@... wrote:

> Hi again.

> I have a few questions and have had no luck finding

> the answers on the net.

> What is the life span? What are the treatments? How

> do they find which

> mutation my child has? What kind of doctors will she

> need to see? She doesn't

> have lung problems so does this mean she has a mild

> case of it? Is it going

> to get worse? Is there anything I should be cautious

> about? Does CF carry

> other syndrome features? ( she has a few) Should I

> treat her like my other

> children or be more protective? Will she need

> special treatment in school?

> The list goes on and on. Please someone help me

> figure this out.

> Thanks,

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

My son will be 8 months in a couple of days and doesn't get up on all fours

yet, either. We happen to have an evaluation set up in a week with a physical

therapist for a different problem but I'll ask her about it. I wouldn't

reccommend worrying about his not crawling, some babies actually skip that step

and

go straight to walking and yes, it probably did give him a slow start that he

was in casts for 3 1/2 months. My baby was also in casts for so long. Don't

worry about it, every baby is different.

[Guest guest]

I don't remember when Alaya started crawling, but I think it was 9 or 10

months. I don't think he is behind in that aspect, but Alaya didn't walk until

20

months. (we also took her to a local ortho and PT, they said don't worry she

will walk when ready) All kids develop at their own rates and if everything

else is on target I wouldn't worry.

I know that others have probably said this, but you should not have trouble

with the DBB unless the foot isn't corrected, is slipping and causing blisters

or unless the child has just learned that if he cries you will take it off.

I'm glad you are switching drs. With the ponseti method, if done right, a

child shouldn't have to be in more than 5-7 casts changed weekly then the final

cast after tenotomy for three weeks. That is 2 1/2 months. Since you said your

dr. didn't know what he was doing it sounds like Logan wasn't completely

corrected. You shouldn't have to take off work because he hasn't adjusted to

the

bar if he is corrected properly. My child went to babysitters, church nursery

and other places with the bar with no problem. How long has he been without

the brace. Do his feet look overcorrected (turning out)? Dr. H will probably

recast him a few times then try the bar again. There really are no good

alternatives to the bar. Dr. Ponseti has tried AFO's and other options and none

work as good as the bar. Alaya has been in it for 2 1/2 years and we haven't

had any problems with it so it can be done. I will keep you in my prayers and

hope that the situation will be taken care of. Let us know what Dr. H says.

Joanne

[Guest guest]

:

First off- let me tell you that we just went to see Dr. Herzenberg and he is

wonderful. He did the most through assessment of my child of anyone that

has seen. As he has seen so many doctors! I have a 2 " binder full of reports,

tests, etc and I could throw it all away and keep only the assessment that Dr. H

did. I was really impressed! My only suggestion- take any history you have.

He really looks it over! He is also out of the Country right now and has been

gone for 2 weeks so there was all that time he could not see people. I am sure

that they got you in as soon as they could.

Second- my son screamed in the DBB and it was because his foot was not fully

corrected. It was also at the wrong degrees and had the wrong bar. We stopped

using it to.... He will help you determine if there was something wrong with

Logan's feet and/or the bar. We had to go to a new doctor after we stopped

using it and I had the same fear. That he would say " just stick him back in

there " . But he didn't. He said there must have been a reason that the child was

reacting that way. Now don't get me wrong no kid loves the DBB- but I think you

can tell- I know I could when the feet were really ready for it.

Third- I have three kids on my street. All around 8 months and none of them

crawling. Please don't worry too much about that. The woman who is coming to

the house is supposed to help you, not scare you. She should be encouraging you

and supporting you so can encourage him and support him. Now, that being said

our son does have some developmental delays- I blame totally on the clubfoot and

treatment thereafter. But, when you look at it he was casted for 8 mos and in

the DBB 20 hours a day. His body did not have the opportunity to do things like

a baby not in those devices. Give Logan some time and you will see what you

need to see. If you can get her on your side, I would still with her because

you may want him to have those services down the road. We have in PT and

I feel that it is very helpful.

I am a Child Development Specialist and a mother of Four (one with clubfoot).

Children are going to do things at different times when they are ready.Yes stay

informed. Yes know what he should be doing. Yes help him learn to do it. But,

know that it will all happen in good time! Relax and know that he has been

through much more than your average child.

Take care and keep your chin up.. Where do you live?

, 18 mos, left clubfoot

a few questions

I haven't posted in awhile ...Logan is 8 months old was going to a

local pediatric ortho doctor. After seeing so many people talking

about their drs and how well they worked with them and the babies I

decided to make an appt with Dr. Herzenberg. We have had the hardest

time getting in to see him finally our appt is on Friday the 30th. I

am nervous because I don't know how much more needs to be done since

the last ortho doctor didn't really seem to know what he was doing.

Anyways, when we stopped going to the ortho Logan was in the dbb. It

was murder to us...and him he screamed from the moment we put it on

til we took it off. Other parents have told me that they have went

through the same thing that the babies get used to it. Logan did

not....he went two weeks straight screaming and since he goes to

daycare....I really couldn't afford to have the day care lady calling

me everyday to come get him.....so he has not been wearing it... I

guess my question to you parents out there...is did all of your

babies have to wear the dbb? I would think that there would be an

alternative. I don't know what else to do...and I am afraid that dr.

Herzenberg is going to tell me that he has to wear it.....but really

I can't afford to come home everyday because Logan screams all day at

day care with it on. The only way he is quiet is if your holding

him. Its a mess we did that for a month. Was supposed to be three.

ALSO!! Crawling........ I have early intervention ( physical therapy)

come to my home once a month for Logan. Its nice but they really

make me nervous with where he is supposed to be and where he is now.

Logan does not crawl yet actually does not get up on his knees at

all. I keep telling myself he was in cast 3 and half months of his

life so he is a little behind but the therapist keep telling me that

it has nothing to do with it. Have any of you all had a late

crawler. Those therapy people really know how to make me nervous.

any comments or help would make me feel so better. thanks

[Guest guest]

,

Our son was also late with his rolling over (not till 7 months),

crawling (11 months), sitting (11-12 months), etc. He just started

walking now at 16 months and is doing awesome. He has some other

problems with his spine but I think much of it was the timing of him

wearing the brace full time and also the casts. He has taken longer

for his milestones but continues to catch up. My daughter who has no

problems didn't walk till she was 15 months. Talk it over with Dr.

Herzenberg.

As far as his screaming, check the Files section under " Shoes " by

the " castlady " from 1/25/2003. After reading her pages, if you have

done everything you can, then maybe something could be wrong. I

think many of your questions will be answered at your appointment (at

least I hope so). I know you are worried and hope you will have

peace of mind soon.

Take care,

Bethany

> I haven't posted in awhile ...Logan is 8 months old was going to a

> local pediatric ortho doctor. After seeing so many people talking

> about their drs and how well they worked with them and the babies I

> decided to make an appt with Dr. Herzenberg. We have had the

hardest

> time getting in to see him finally our appt is on Friday the 30th.

I

> am nervous because I don't know how much more needs to be done

since

> the last ortho doctor didn't really seem to know what he was

doing.

> Anyways, when we stopped going to the ortho Logan was in the dbb.

It

> was murder to us...and him he screamed from the moment we put it on

> til we took it off. Other parents have told me that they have went

> through the same thing that the babies get used to it. Logan did

> not....he went two weeks straight screaming and since he goes to

> daycare....I really couldn't afford to have the day care lady

calling

> me everyday to come get him.....so he has not been wearing it... I

> guess my question to you parents out there...is did all of your

> babies have to wear the dbb? I would think that there would be an

> alternative. I don't know what else to do...and I am afraid that

dr.

> Herzenberg is going to tell me that he has to wear it.....but

really

> I can't afford to come home everyday because Logan screams all day

at

> day care with it on. The only way he is quiet is if your holding

> him. Its a mess we did that for a month. Was supposed to be

three.

> ALSO!! Crawling........ I have early intervention ( physical

therapy)

> come to my home once a month for Logan. Its nice but they really

> make me nervous with where he is supposed to be and where he is

now.

> Logan does not crawl yet actually does not get up on his knees at

> all. I keep telling myself he was in cast 3 and half months of his

> life so he is a little behind but the therapist keep telling me

that

> it has nothing to do with it. Have any of you all had a late

> crawler. Those therapy people really know how to make me nervous.

> any comments or help would make me feel so better. thanks

[Guest guest]

Simon rolled over at 3 1/2 months. He crawled at 7 months but he changed

from dbb's to afo's at 6 months old. He is cruising at 10 months.

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject: Re: a few questions

>Date: Mon, 26 Jan 2004 23:07:51 -0000

>

>,

>Our son was also late with his rolling over (not till 7 months),

>crawling (11 months), sitting (11-12 months), etc. He just started

>walking now at 16 months and is doing awesome. He has some other

>problems with his spine but I think much of it was the timing of him

>wearing the brace full time and also the casts. He has taken longer

>for his milestones but continues to catch up. My daughter who has no

>problems didn't walk till she was 15 months. Talk it over with Dr.

>Herzenberg.

>As far as his screaming, check the Files section under " Shoes " by

>the " castlady " from 1/25/2003. After reading her pages, if you have

>done everything you can, then maybe something could be wrong. I

>think many of your questions will be answered at your appointment (at

>least I hope so). I know you are worried and hope you will have

>peace of mind soon.

>Take care,

>Bethany

>

>

>

> > I haven't posted in awhile ...Logan is 8 months old was going to a

> > local pediatric ortho doctor. After seeing so many people talking

> > about their drs and how well they worked with them and the babies I

> > decided to make an appt with Dr. Herzenberg. We have had the

>hardest

> > time getting in to see him finally our appt is on Friday the 30th.

>I

> > am nervous because I don't know how much more needs to be done

>since

> > the last ortho doctor didn't really seem to know what he was

>doing.

> > Anyways, when we stopped going to the ortho Logan was in the dbb.

>It

> > was murder to us...and him he screamed from the moment we put it on

> > til we took it off. Other parents have told me that they have went

> > through the same thing that the babies get used to it. Logan did

> > not....he went two weeks straight screaming and since he goes to

> > daycare....I really couldn't afford to have the day care lady

>calling

> > me everyday to come get him.....so he has not been wearing it... I

> > guess my question to you parents out there...is did all of your

> > babies have to wear the dbb? I would think that there would be an

> > alternative. I don't know what else to do...and I am afraid that

>dr.

> > Herzenberg is going to tell me that he has to wear it.....but

>really

> > I can't afford to come home everyday because Logan screams all day

>at

> > day care with it on. The only way he is quiet is if your holding

> > him. Its a mess we did that for a month. Was supposed to be

>three.

> > ALSO!! Crawling........ I have early intervention ( physical

>therapy)

> > come to my home once a month for Logan. Its nice but they really

> > make me nervous with where he is supposed to be and where he is

>now.

> > Logan does not crawl yet actually does not get up on his knees at

> > all. I keep telling myself he was in cast 3 and half months of his

> > life so he is a little behind but the therapist keep telling me

>that

> > it has nothing to do with it. Have any of you all had a late

> > crawler. Those therapy people really know how to make me nervous.

> > any comments or help would make me feel so better. thanks

>

>

>