New to Group

[Guest guest]

Welcome and ,

I don't think anyone can defiantly answer your question about how severe you

son CF will be because I think everyone with CF is different. I think it all

depends on the different combinations of the make of the individual. I have

two with CF and they have the same mutations but one of my girls is having

problems with sinus. She has had two sinus surgeries so far and my youngest

who is 4 has not had any signs of sinus problems and they tell me at the

clinic she may not because she might have some different making that might

cause her not to have problems. Each kid has different genes that make each

person different. My girls have one gene that is the F 508 and one that is a

rare mutation. They think it took us longer to find out about the CF because

of the rare mutation. You didn't say how you found out about your sons CF. We

found out because my oldest had polyps hanging out of her nose one very

strong sign of a kid having CF because she is to young to have as many polyps

in her nose. Well, I hope I helped some and I am sure you will love this

group and learn a lot from this group too. Deb mom of 9 w/CF, Lynzie

7 wo/CF, and Natalynn 4 w/CF

[Guest guest]

Hi and Tiffeny,

I am the mother of 2 daughters with CF. They are 19

and 16 years old. We are like one big family here. These people have helped

me through alot of things with cf. Good luck with Sam . patty

[Guest guest]

Welcome and ,

Congratulations on the birth of Sam! Despite the joy of his arrival, I'm

sure this is a very difficult time for you. It is very scary at first, and

sometimes you get glimmers of that later, too - when you worry - but things

even out a little after diagnosis.

My son is also a double DF508. He is now 4. I am wondering how Sam was

diagnosed if he has no symptoms. Do they perform CF tests on all newborns

at your hospital? That's a wonderful thing, if that's the case - Santosh's

hospital is one of 3 in the state of Connecticut that do not perform them at

birth, so we had to wait 9 months for a diagnosis.

There is a lot of discussion about the severity of CF and gene mutations,

but I think it is individual for each person. It's so hard to pinpoint what

is considered " mild " and " severe " . My son had tremendous difficulty gaining

weight despite consuming over 2500 calories per day by 4 months old

(8x8ounce bottles, plus endless jars of baby food and baby cereal). As you

can see, he is not pancreatic sufficient - I think that is common in DF508

but there are always exceptions, and perhaps Sam is one of them.

Otherwise he has been doing well from a pulmonary perspective. From a

prevention standpoint, I can tell you that I NEVER took him out before he

was almost 3 - by that I mean no grocery shopping, no library, no mall, no

church, and no school. I was terrified that he'd get sick and lose weight,

and since he wasn't putting any on, this made sense to me. I never let him

get around sick children, either. The one time I took him out was to visit

my sister-in-law in Manhattan (against my better judgment but my husband

thought I was insane for keeping him in all the time) and he caught RSV on

that visit and landed in the hospital. I am not sure if that's why he's

done well from a pulmonary perspective thus far. He is in school now and

has his share of colds and fevers. He had one episode of bronchitis last

year, but a course of antibiotics took care of it. He also had Synergis

shots (after he caught RSV) for three full fall seasons - that may have

contributed to his well-being.

I wish you and your wife luck - this list is a wonderful resource and the

people on it are very caring and sensitive. You're going through a hard

time now in if you need to vent everyone is here to listen.

All my best to you,

Krishnan

Mom to Santosh, 4wcf and Leela, 2wocf

[Guest guest]

,

Welcome to the list. My son is one year old and was diagnosed in July.

He also carries 2 copies of the delta F508 mutation.

> My wife and I are just now learning more about CF and

> many of the special challenges that await. It is

> definitely scary not knowing just what to expect and

> when we will start to see CF symptoms in Sam.

I'm still learning about all of this, too. With time, you'll feel more sure

of what to expect. One thing I've learned already is that with CF there are

no " rules " -- every child is different and manifests CF differently.

> I was wondering if there is any correlation between a

> specific gene mutation and the severity of CF. Is a

> double F508 an indication that he will have a more

> severe case of CF? Currently he does not show any

> symptoms of CF and I was also curious if that could be

> an early indication that his CF will not be as severe?

From what I have read ( Orenstein's Cystic Fibrosis: A guide for

patient and family, which I highly recommend you get a copy of), there are

no correlations between mutation and severity of lung involvement. However,

certain mutations are associated with pancreatic sufficiency (where they do

not need enzymes to process food). Double df508 is assoicated with

early-onset pancreatic *in*sufficiency -- meaning most kids with that

mutation will develop fat malabsorption and need to take enzymes to help

them digest their food. The amount they will need, and when they will start

needing them, varies greatly from child to child. And there are some double

df508 individuals who are pancreatic sufficient.

Welcome, this list is a great resource for information and support.

mama to 1 yo w/CF and 3 yo woCF

[Guest guest]

HI & -

So sorry to hear about your baby. My son is 3 yrs old wcf and my sister 25

wcf. My son has one Delta F508, but my sister has two Delta F508's like

your son. I can only tell you that my sister is now 25, and has had a very

healthy normal life. She's been a dancer . a cheerleader, and is now

married and wanting to have children of her own. They have told me that the

508 is primary lung involved, but my sister really only had pancreatic

problems - needing enzymes - until her late teens, when she started

developing a little lung trouble. She has had her infections and IV's, but

only a few times per year. I find that to be pretty minimal. My son had

the one 508, and at 3 years of age, praise God, he has been very healthy,

aside from prematurity and bowel perforation at birth.

I think one of the keys to staying healthy is to use caution when exposing

your children/family to others who may be ill, large crowds, school or kids

groups and especially being careful during flu/rsv season. My son does not

have contact with any other children other than my very good friends that

are very aware of our situation. I do, however, take him to the zoo, parks,

etc but during off times when there are fewer children that I don't know.

Also, lot of hand washing!

I think it is key that you found out about CF early and can start caring for

your son and prevent any serious problems that may arise. My experience has

been, when I am in question of ANYTHING that is going one with my son, I

call the CF center. They are more than happy to listen and help determine

if something is not right. Never hesitate to call them. We know our

children best, and if you suspect something is not quite right, it probably

isn't. It seems the most frequent problems are with bowels (indicating

malabsorbtion) and coughs (indicating infection or asthma). If either of

these things occur, I would call the CF center right away.

I know a lot of others are more experienced than I, but I thought I would

help if I could!

Melinda

New to Group

Hi,

I just found this list. My son, Sam, was diagnosed 3

weeks ago with CF upon birth. He has the Delta F508

mutation 2x.

My wife and I are just now learning more about CF and

many of the special challenges that await. It is

definitely scary not knowing just what to expect and

when we will start to see CF symptoms in Sam.

I was wondering if there is any correlation between a

specific gene mutation and the severity of CF. Is a

double F508 an indication that he will have a more

severe case of CF? Currently he does not show any

symptoms of CF and I was also curious if that could be

an early indication that his CF will not be as severe?

Just curious as to what the different opinions are out

there. Also, in that he has not demonstrated any

symptoms yet, is there anything can be dont to prevent

the onset of CF?

- &

Parents to Jack 3yo,wocf and Sam 3weeks wcf

__________________________________________________

[Guest guest]

and ,

welcome to the group! I have a four year old daughter with double

dF508 and am glad to say that so far she is very healthy. I am

thankful for every day that she keeps her health and optimistic that

a cure will come in time.

Peace

Torsten, dad of Fiona 4wcf

[Guest guest]

& ,

My daughter Emma was diagnosed in the exact same manner and also has a

double delta F508 mutation. No history on either side. She showed some

slight signs but I didn't recognize them because she has an older sister

that has/had similar stool problems (floating poop, runny, yellow) and I

figured it was the fact that they were breast feed babies. Her older

sister is a carrier and sweat test was less than 10. At two weeks, we

were called on a late Friday afternoon and told over the phone about a

DNA test our pediatrician ran without our knowledge due to a prenatal

test at birth that indicated a high likelihood of CF. Her sweat test the

following monday confirmed the DNA results.

We have been very lucky so she has had no real lung involvement. She has

been on antibiotics a few times to prevent possible lung problems due to

colds that wouldn't go away but other than that, her lungs have been

great. Her real problem has been pancreatic in nature. Starting around

7 months, she slowly started decreasing how much she eat until she was

hospitalized at 13 months because she totally stopped eating and

drinking. At that time, we switched her CF care providers and her new

clinic immediately hospitalized her. Prior to her hospitalization, she

had been diagnosed with a mild case of acid reflux but her original CF

team did not do much to address it other than giving her Zantac which for

her did nothing. Her new team immediately put her on Reglan and

Prilosec. She now eats a four ounce jar of food at one sitting and does

this four times a day. Any more food than this and she pukes. She also

now has a feeding tube which provides her hydration as well as some extra

calories since she still refuses to drink.

She is doing wonderful at this moment. She just had a check-up this week

and finally is over 20 pounds. Her height jumped by 3/4th of an inch in

one month due to her finally getting food done and being better

nourished. She now sits about half way between the 10th and 25th

percentiles. Her sister is only around the 25th as well so I think soon

she will be where she really should be. I will say it's amazing what a

difference in CF doctors will do. I spent almost 7 months trying to get

her to eat, crying on almost a daily basis over the frustration and

anxiety of not knowing what to do to get her to eat, being told that a

lot of it was behavioral (subsequently told this is not true for infants)

and that I was causing her to get excited and not eat because she felt my

frustration and anxiety. Two months at her new clinic (Children's

Hospital of Philadelphia) and she's eating, I am more relaxed, I was told

I was not contributing to the problem and hey she is gaining weight.

Anyway, I know this is real long winded. A lot of the questions you

asked don't really have answers to and personally for me it helped to

hear what other people with the same mutation have been through. I have

clung to the hope that the fact that since she has not had severe lung

symptoms means her lung involvement will be less severe but in my heart

I know it's impossible to know what the future holds and how her

individual course for this disease will play out. I focus on today and

how well she is doing now. I do not focus on tomorrow and what may

happen, I try to focus on my mental focus today. I need to make sure

that whatever happens I will be able to handle it. It's important to

take time to relax and enjoy today. Regarding preventing the onset of

CF, the best you can do therapy, therapy, and more therapy, prevent him

from getting colds and if he does, make sure you increase his therapy to

three or more times a day (your doctor usually gives you feedback on

this) and if it won't go away, get the doctor involved to properly manage

it (it's not treated the same way as a kid without CF).

I hope this helps,

- mother of Emma 15 months w/cf and Isabelle 3 years wo/cf

On Tue, 9 Oct 2001 14:49:53 -0700 (PDT) Underwood

datiko@...> writes:

> Hi,

>

> I just found this list. My son, Sam, was diagnosed 3

> weeks ago with CF upon birth. He has the Delta F508

> mutation 2x.

>

> My wife and I are just now learning more about CF and

> many of the special challenges that await. It is

> definitely scary not knowing just what to expect and

> when we will start to see CF symptoms in Sam.

>

> I was wondering if there is any correlation between a

> specific gene mutation and the severity of CF. Is a

> double F508 an indication that he will have a more

> severe case of CF? Currently he does not show any

> symptoms of CF and I was also curious if that could be

> an early indication that his CF will not be as severe?

>

> Just curious as to what the different opinions are out

> there. Also, in that he has not demonstrated any

> symptoms yet, is there anything can be dont to prevent

> the onset of CF?

>

> - &

> Parents to Jack 3yo,wocf and Sam 3weeks wcf

>

> __________________________________________________

>

[Guest guest]

I don't know about anyone else but when I was pregnant I didn't know any of

my kids had CF and the two that do have CF was the worse deliveries out of

the 3. They were long and they didn't want to come out to bad. My middle kid

that doesn't have CF was such an easy delivery. I don't know if it had to do

with the CF but I tend to wonder. Deb

[Guest guest]

Hello ,

Welcome to this wonderful list. You will get such great advise with the day

to day living with Cf. I also have a 4 year old daughter with cf and a 7

year old son without Cf, not even a carrier. My daughter was dx at 3 weeks

of age and she has never shown symptoms until she was 13months with a cold.

So for bowel blockages I cant be of much use.

Mummy to Liam 7 wocf & Eilish 4 wcf

new to group

> hello all,

>

> my name is melissa, i have a 4 year old daughter, jaycee, who is cf. i

also

> have a 9 month old, brianna, who has not been tested and am currently 4

> months pregnant. we just found out a month and a half ago that jaycee has

> cystic fibrosis. it has gone undiagnosed, even though it should've been

when

> she was still a newborn but wasn't, until now. our family is dealing very

> well with cf having never had it before in our family. it has changed

alot

> of things, but as each day passes it becomes more of our way of life. for

> all of you who are expecting or have experienced giving birth to a infant

who

> had the meconium ileus blockage, if you have any ideas on how i can tell

if

> my child is going to have that problem please let me know. i'm very

afraid

> of my newborn having it, so we are having her tested right after birth

also i

> am having ultrasounds done at every visit, which is now every two weeks.

>

> eager to hear from ya'll!!

> melissa

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

WELCOME TO THE LIST. WILL TALK TO YOU LATER.....ENJOY THE GREAT LIST FOLKS

HERE !!

love, GRANDMOMbev

new to group

hello all,

my name is melissa, i have a 4 year old daughter, jaycee, who is cf. i also

have a 9 month old, brianna, who has not been tested and am currently 4

months pregnant. we just found out a month and a half ago that jaycee has

cystic fibrosis. it has gone undiagnosed, even though it should've been

when

she was still a newborn but wasn't, until now. our family is dealing very

well with cf having never had it before in our family. it has changed alot

of things, but as each day passes it becomes more of our way of life. for

all of you who are expecting or have experienced giving birth to a infant

who

had the meconium ileus blockage, if you have any ideas on how i can tell if

my child is going to have that problem please let me know. i'm very afraid

of my newborn having it, so we are having her tested right after birth also

i

am having ultrasounds done at every visit, which is now every two weeks.

eager to hear from ya'll!!

melissa

PLEASE do not post religious emails to the list.

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

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Welcome to the list .

My older daughter (4) was born with meconium ileus and in our case it was found

on an ultrasound as a bowel obstruction. The doctor said there were three

possibilites for this, one being a sign of cf. She was born full term, 8lbs.

8oz. and couldn't keep food down so she was flown to Arkansas Children's

Hospital - she ended up passing the meconium on her own.

What meds and treatments is Jaycee doing? How is she adjusting? It sounds like

you and your family have a very positive attitude.

Again, welcome!

Christy

Mom to Mackenzie 4 w/ cf and Peyton 11 months w/o cf

new to group

hello all,

my name is melissa, i have a 4 year old daughter, jaycee, who is cf. i also

have a 9 month old, brianna, who has not been tested and am currently 4

months pregnant. we just found out a month and a half ago that jaycee has

cystic fibrosis. it has gone undiagnosed, even though it should've been when

she was still a newborn but wasn't, until now. our family is dealing very

well with cf having never had it before in our family. it has changed alot

of things, but as each day passes it becomes more of our way of life. for

all of you who are expecting or have experienced giving birth to a infant who

had the meconium ileus blockage, if you have any ideas on how i can tell if

my child is going to have that problem please let me know. i'm very afraid

of my newborn having it, so we are having her tested right after birth also i

am having ultrasounds done at every visit, which is now every two weeks.

eager to hear from ya'll!!

melissa

[Guest guest]

Hi ! Welcome to the list. I don't have any advice on the meconium

ileus, though I do know of one person whose daughter had it while she was in

the womb, but it disappeared before birth.

Sounds like you guys are doing well. I have two children, , who is

three, and , who is 13 months. was diagnosed with CF in July, so

three months ago. We too are doing pretty well considering...just getting

used to day to day life and what we need to do for him, trying to keep him

as healthy as possible.

This list has been a great resource and support for me, and I hope it is for

you as well.

mama to 1 yo w/CF and 3 yo woCF

[Guest guest]

,

Welcome!

Meconium ileus will sometimes show on an ultrasound as bright bowel.

The technician will probably notice it straight away if your child

has it, and won't say a word to you.

If your baby does have cf, and has a blockage (as only 10% of babies

with cf are born with), then your doctor (and your pediatrition)

will take appropriate measures to clear the blockage. It sounds as

if your doctor is right on top of things by doing frequent

ultrasounds!

My son had meconium ileus at birth and surgery was not required, only

special enemas given at Children's Hosp.

I know it's hard, but try to take it easy and not worry too much.

(For the baby's health if not for your own good!)

Good luck!

~

[Guest guest]

-

My son was diagnosed in utero with CF (my sister is 25 with CF). I started

reading and read about the meconium ileus and requested an ultrasound late

in pregnancy. I believe I was 30 weeks when it was dicovered. It sounds

like you have it covered with the ultrasounds, but stay on top of it. Not

to scare you, but to be aware, my son's bowel had burst and filled his belly

cavity w/fluid. They were afrais that his lungs and other organs had not

had a fair chance to grow because of all the fluid pressure against the

organs. His organs were ok, but you are wise to stay on top of this! Best

wished to you and your family.

Melinda

new to group

hello all,

my name is melissa, i have a 4 year old daughter, jaycee, who is cf. i

also

have a 9 month old, brianna, who has not been tested and am currently 4

months pregnant. we just found out a month and a half ago that jaycee has

cystic fibrosis. it has gone undiagnosed, even though it should've been

when

she was still a newborn but wasn't, until now. our family is dealing very

well with cf having never had it before in our family. it has changed

alot

of things, but as each day passes it becomes more of our way of life. for

all of you who are expecting or have experienced giving birth to a infant

who

had the meconium ileus blockage, if you have any ideas on how i can tell

if

my child is going to have that problem please let me know. i'm very

afraid

of my newborn having it, so we are having her tested right after birth

also i

am having ultrasounds done at every visit, which is now every two weeks.

eager to hear from ya'll!!

melissa

[Guest guest]

Deb,

My son who is 14 w/ocf, was my worse delivery, I was in labor 27 hours with

him, but did only take17 minutes to push him out. Now my 11 year old

daughter w/cf, I was induced due to preeclampsia developing the last week, I

was in labor 4 1/2 hours, and pushed for 20 minutes, even though she was

looking up at the world during birth.

S.

Re: new to group

> I don't know about anyone else but when I was pregnant I didn't know any

of

> my kids had CF and the two that do have CF was the worse deliveries out of

> the 3. They were long and they didn't want to come out to bad. My middle

kid

> that doesn't have CF was such an easy delivery. I don't know if it had to

do

> with the CF but I tend to wonder. Deb

>

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>

[Guest guest]

One thing I forgot to mention was they both passed meconium prior to

delivery, due to both had the cord around their neck, but the obstatrician

said he could of used the cords to play jump rope they were so long, and

healthy.

S.

new to group

>

>

> hello all,

>

> my name is melissa, i have a 4 year old daughter, jaycee, who is cf. i

also

> have a 9 month old, brianna, who has not been tested and am currently 4

> months pregnant. we just found out a month and a half ago that jaycee

has

> cystic fibrosis. it has gone undiagnosed, even though it should've been

when

> she was still a newborn but wasn't, until now. our family is dealing

very

> well with cf having never had it before in our family. it has changed

alot

> of things, but as each day passes it becomes more of our way of life.

for

> all of you who are expecting or have experienced giving birth to a

infant who

> had the meconium ileus blockage, if you have any ideas on how i can tell

if

> my child is going to have that problem please let me know. i'm very

afraid

> of my newborn having it, so we are having her tested right after birth

also i

> am having ultrasounds done at every visit, which is now every two weeks.

>

> eager to hear from ya'll!!

> melissa

>

>

[Guest guest]

Hi there Stehen and nna,

We never had a hungry baby. It was always a struggle to get Elliot, ten mths,

to eat. I can't help with any suggestions because we had the opposite

problems. How come she can only av 5 ounces at a time?

I am glad she is doing better.

[Guest guest]

Her reflux was really bad and when she refluxed some of the fluid would go

into her lungs and she developed psedomonus in the lungs. We have to limit

the amount of milk she gets to keep her from refluxing.

stephen

Re: new to group

> Hi there Stehen and nna,

>

> We never had a hungry baby. It was always a struggle to get Elliot, ten

mths,

> to eat. I can't help with any suggestions because we had the opposite

> problems. How come she can only av 5 ounces at a time?

>

> I am glad she is doing better.

>

>

>

>

[Guest guest]

and nna,

welcome to the list! I hope we'll be your little family away from home and can

help you to adjust to the new situation. Feel free to ask whatever you want to

know about CF. And of course we keep our fingers crossed that everything is okay

with your elder daughter.

Peace

Torsten, dad of Fiona 4wcf

e-mail: aberdeen95@...

Hi,

Our names are stephen and rosanna we have a 4 month old baby with cf she has had

a rocky start at first but the medications she is on has made her a lot better.

She is on zantac twice a day and on reglan four times a day. She also has to

have three breathing treatments and chest pt daily. We thicken her milk with

cereal to help with the reflux and give her applesauce to take her enzymes.

we have a two year old that we have just tested and are waiting for the results.

She has shown no signs of having cf but we wanted to make sure.

We are still learnig about all the things we need to know there is so much to

learn and try to understand.

Any ideas on how to keep the baby happy between feedings she is only allowed to

have 5 ounces of milk at a time we feed her every three hours she just doesnt

seem satisfied.

thanks,

s&r

[Guest guest]

& nna,

Welcome to the group. You'll find out such alot about Cf and the day to day

stuff plus alot fo humour here also.

from Australia

new to group

> Hi,

>

> Our names are stephen and rosanna we have a 4 month old baby with cf she

has had a rocky start at first but the medications she is on has made her a

lot better. She is on zantac twice a day and on reglan four times a day. She

also has to have three breathing treatments and chest pt daily. We thicken

her milk with cereal to help with the reflux and give her applesauce to take

her enzymes.

> we have a two year old that we have just tested and are waiting for the

results. She has shown no signs of having cf but we wanted to make sure.

>

> We are still learnig about all the things we need to know there is so much

to learn and try to understand.

>

> Any ideas on how to keep the baby happy between feedings she is only

allowed to have 5 ounces of milk at a time we feed her every three hours she

just doesnt seem satisfied.

>

> thanks,

> s&r

>

>

>

[Guest guest]

WELCOME.

You will find comfort here from many who are also waiting for better DX.

Please know that research and medical help is very good in today's CF

world.

Have a great week ahead .

LOVE & HUGS,

GrandmomBEV

New To Group

Hi all

My son does not have a formal diagnosis of CF, sweat

tests and genetyping say he does not. He does however

have a severe immune deficiency (also on PedPID list),

that has affected his lungs as if he has CF. He was

just discharged from the hospital after 22 days

because he has developed bronchiectasis. His lung

capacity is now only 46%. We use the VEST, pulmozyme,

other nebs, etc. He's now on TPN because the

bronchiectasis causesd this 9 year old to drop to 34

lbs. I'm just looking for others to commiserate

with and hope to learn something, I'm sure I can

contribute very little.

Thanks.

Sandy

Adam's Mom

Chronic lung disease, diabetes, hypthyroidism,

profound growth failure, cvid, etc., etc.

__________________________________________________

[Guest guest]

Sandy,

Welcome to the list. I am sure you will find a welcome retreat

here. It sounds as if the issues you face are very similar to CF,

except that with the immune deficiency of course in many ways your

son has even more difficulties than most of the younger kids with

CF. Still, you will find this a good place to compare notes about

vest, nebs and lung issues, as well as iv stuff since your son is on

TPN. Does he have a central line like a Hickman or Broviac, or does

he have a port?

I have 7 kids total, three of whom have CF. ( age 6, Mallory

age 4, and ph age 2) Two of our kids are adopted (Mollie age 9

and Madison age 5), one of whom (Mollie) has juvenile diabetes. Then,

there is who is 7 and our wild child, and Miranda who at 10 is

hitting puberty, ugh! Mallory and both have ports. Mallory

gets iv antibiotics every 3 months and JOshua usually every 5 months

or so. They are, of course , on tobi, pulmozyme, pulmicort,

albuteral nebs, etc. ph is on all the same treatments, except he

does not have a port and thankfully has managed to narrowly escape iv

antibiotics so far (thank you cipro!). They are all on enzymes of

course, but then that probably is not an issue for your son. Mollie

has type one (juvenile onset) diabetes, so she is insulin dependent,

and takes insulin shots 5 times a day (2 long acting, three short

acting).

Other than that, we are a pretty normal family. We like to spend our

summers on the boat on the lake as much as possible. The kids like

to sing and the oldest two play guitar. They all go to a small

private school that is really into the outdoors (ropes course,

canoeing, etc) so they get alot of exercise. The school has been

terrific to work with us, letting the kids come to school with their

ports accessed, and letting them keep their enzymes (and insulin) in

their rooms and also giving them nebs at nap time/rest time, etc.

Ron, their Daddy, my hubby, is a stay at home dad since at any given

time some one is sick or needs to go to the doctor, and currently

ph is still at home (he starts preschool in the fall...yeah,

Daddy can work through that Honey do list!)

Welcome to the list!

Jen

> Hi all

>

>

> My son does not have a formal diagnosis of CF, sweat

> tests and genetyping say he does not. He does however

> have a severe immune deficiency (also on PedPID list),

> that has affected his lungs as if he has CF. He was

> just discharged from the hospital after 22 days

> because he has developed bronchiectasis. His lung

> capacity is now only 46%. We use the VEST, pulmozyme,

> other nebs, etc. He's now on TPN because the

> bronchiectasis causesd this 9 year old to drop to 34

> lbs. I'm just looking for others to commiserate

> with and hope to learn something, I'm sure I can

> contribute very little.

>

> Thanks.

> Sandy

> Adam's Mom

> Chronic lung disease, diabetes, hypthyroidism,

> profound growth failure, cvid, etc., etc.

>

> __________________________________________________

>

[Guest guest]

In a message dated 3/26/2002 4:10:54 PM Central Standard Time,

ron88jen@... writes:

> Ron, their Daddy, my hubby, is a stay at home dad since at any given

> time some one is sick or needs to go to the doctor, and currently

> ph is still at home (he starts preschool in the fall...yeah,

> Daddy can work through that Honey do list!)

>

Man he must be a very patient man to be able to stay home with that many

kids. I know my hubby couldn't do it. And how do you have time to even be on

this cfgroup when you are the one supporting the whole family? It must be

tuff. Deb A

[Guest guest]

Hi Sandy,

welcome to the group. It's sad to hear that Adam is in such a bad shape and

when I get you right the docs don't have many ideas how to help him :-((

One of the main problems with CF is an overreacting immune system, it's not

an autoimmune disease but sometimes similar. Although the reason for the

lung problems is opposite to Adam's, the results are comparable. Has Adam

bacterial lung infections too or what has led to the bronchiectasis?

I am not sure whether we can help each other, but at least we can support

you mentally. And we have a few kids, who are/have been on TPN on the list.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

[Guest guest]

Becky,

I recently read that some people do better taking 1/2 the amount of enzymes

before their meal and the other half after their meal. I found this info on

the Utah's Cf Centers website. Sorry I do not have the exact address.

Mom to Elliot

14mths wcf