Re: new...confused...help!!

November 10, 2003

In a message dated 11/10/2003 9:38:06 PM Central Standard Time,

supermom1820@... writes:

I do know how you feel! I have two daughters with CF. My oldest was diagnosed

at age 6 and my youngest at age 1. They way our doctor figured it out was my

oldest had so many polyps in her nose for her age he thought we really need to

rule out CF and sure enough it was positive. I truly feel if it wasn't for

those polyps we would still be fighting illness of too. First they said it was

asthma and she would grow out of it, then it was she must have allergy's and

she will grow out of it. Both of my girls were the fuses babies but having my

first with CF I though that this is the way it was when you had a baby. But when

my second kid was born and doesn't have CF she was a GREAT baby but then I

had my third and thought OK she is going to be like her big sister. I would ask

our doctor many time why there coughs never seem to quite go away. I would

think they were gone and then in a week it was back. Well, they would say it

must

be a virus going around and she caught it for the second time. I thought I

was going to lose my mind but when the ENT suggested us to be tested for CF and

I started reading more on it and the symptoms the piece of the puzzle was

finally found. Now my girls are so much more healthy now that they get the

antibiotics they need when they need it. You are doing the right thing by not

giving

up and do your research and find out all you can because if it isn't CF there

are many other things it could be that have the same symptoms as CF. So hang

in there. Your a GREAT MOM!! Deb A

November 10, 2003

well it does seem to sound like some other peoples experiences here.

Continual sickness and then finally finding a diagnosis. Many people have

gone past 19 months of sickness. But the earlier they find out if she has

CF the better. Sweat tests can sometimes be negative. Order a blood DNA

test for CF. Make sure they are testing for all of the mutations that they

know of.

mum to Liam 14 months wcf

new...confused...help!!

> Hi...I was referred to this board. My daughter is 19 months old. She

> had a sweat test that came back neative but has alot of symptoms. She

> has gone to see a Pulmonary Dr that heads the Cystic Fibrosis Center

> in South Florida. He is absolutely wonderful, he has ordered a

> battery of blood test as well as a checst xray. He feels her Immune

> System is Deficient. She was born one month premature but healthy.

> She had low blood sugar but that was it. She seemed pretty cranky,

> but as a mother of 2 i gave it no thought, just thought " oh boy, this

> one is a crier " Well after a week of her screaming all the time, only

> sleeping for 15-20 minutes at a time and throwing up her formula,

> diarrhea I expressed my concern to the Ped. They said " Mom, she is

> colicky " I thought...no this is way beyond colic. So I did some

> investigation on Formula and stopped breastfeeding. We tried Soy and

> Holy Cow, she vomited every bit she drank and screamed even louder. I

> then switched Ped's. One week after seeing the new Ped. they

> hospitalized her because her diarrhea had blood in it and she lost

> weight. She spent a week in the hospital on IV's, they said she was

> not absorbing the fat from her formula and she had GERD plus a milk

> protien allergy. So we saw a Ped Gastro. They placed her on Alimentum

> and Zantac and reglan. it helped, but not for long. She then

> underwent Endoscopy, they said she had Esaphogaitis (inflammation and

> corosion of her esophagaus) They placed her on Crafate and Mylanta)

> She seemed a bit better but the Diarehhea was horrendous. She then

> got a cold, no biggie...yeh right. She began gettign so congested we

> had to suction her nose and irrigate it with Saline so she could

> breathe. She choked on her phleghm twice once requiring a trip via

> Ambulance to the ER where the suctioned her airways out removing the

> phelghm. They tested her for RSV which came back negative. The Ped

> placed her on antibiotic, after 14 days she was still sick and

> running a fever of 101 for this entire time. they tried another

> antibiotic, she was allergic to it, than for another 10 days two more

> antibiotics. She got better for 4 days then sick again. She went for

> a CT Scan of her sinuses and it revealed that after 35 days of meds

> she was completely blocked. So they placed her in the hospital for IV

> meds as the oral antibiotics made her ever so bad diarrhea even

> worse. They tried to place a PIC line in her so she could go home,but

> they could not place a line. So she went home on oral antibiotics.

> for 30 more days, she got better for one week at the end, after a

> week off the meds she was sick again, we did the 30 day treatments

> twice after that. Again they sent her for another CT Scan, it showed

> the same thing as the firtst one and she had an ear infection that

> had not cleared after 30 days of meds, so they placed her on 10 more

> days of another med. They also discovered she had hearing loss due to

> Fluid behind her ears. She underwent surgery to place tubes, open her

> sinuses and take out her adenoids. SHe had that done Oct. 10th one

> week after her surgery she got sick again. NMow she has had 3 bouts

> of croup amongst all of this. And now she has croup again. Sunday I

> noticed she seemed so out of breathe playing and she had started

> coughing, I figured let me watch and call the Dr monday if it hadn't

> gotten any better. Well by 9:30pm sunday night she was so bad I

> almost went to the ER. She could not breathe without sounding like a

> seal. It was the worse breathing and cough I have ever experienced

> with Croup. So first thing this morning she went to the PEd they

> placed her on Orapred again.... She is not eating and that is Another

> issue. She has been 23-24 pounds since march of 03. And we give her 1-

> 2 pediasures a day and she used to eat great now she won't eat

> anything. She can't gain weight. I feed her fatty foods like the Ped

> said and give her Pediasures. She drinks juice like its going out of

> style and I tried cutting back but she dehydrates in a snap. the

> Pulmonary Dr said depending on what the blood work showed he may want

> to do a genetic CF test on her.

>

> Has anyone else been through this?

> Am I maybe missing something here?

>

> I just want her to be better, we are going on 19 months of illness

> and no answers.

>

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

> 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.

>

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

>

November 10, 2003

Welcome Mellissa,

I am glad that you found us! I hope someone here can answer you better than I

could!

Mom of , 5 with CF

new...confused...help!!

Hi...I was referred to this board. My daughter is 19 months old. She

had a sweat test that came back neative but has alot of symptoms. She

has gone to see a Pulmonary Dr that heads the Cystic Fibrosis Center

in South Florida. He is absolutely wonderful, he has ordered a

battery of blood test as well as a checst xray. He feels her Immune

System is Deficient. She was born one month premature but healthy.

She had low blood sugar but that was it. She seemed pretty cranky,

but as a mother of 2 i gave it no thought, just thought " oh boy, this

one is a crier " Well after a week of her screaming all the time, only

sleeping for 15-20 minutes at a time and throwing up her formula,

diarrhea I expressed my concern to the Ped. They said " Mom, she is

colicky " I thought...no this is way beyond colic. So I did some

investigation on Formula and stopped breastfeeding. We tried Soy and

Holy Cow, she vomited every bit she drank and screamed even louder. I

then switched Ped's. One week after seeing the new Ped. they

hospitalized her because her diarrhea had blood in it and she lost

weight. She spent a week in the hospital on IV's, they said she was

not absorbing the fat from her formula and she had GERD plus a milk

protien allergy. So we saw a Ped Gastro. They placed her on Alimentum

and Zantac and reglan. it helped, but not for long. She then

underwent Endoscopy, they said she had Esaphogaitis (inflammation and

corosion of her esophagaus) They placed her on Crafate and Mylanta)

She seemed a bit better but the Diarehhea was horrendous. She then

got a cold, no biggie...yeh right. She began gettign so congested we

had to suction her nose and irrigate it with Saline so she could

breathe. She choked on her phleghm twice once requiring a trip via

Ambulance to the ER where the suctioned her airways out removing the

phelghm. They tested her for RSV which came back negative. The Ped

placed her on antibiotic, after 14 days she was still sick and

running a fever of 101 for this entire time. they tried another

antibiotic, she was allergic to it, than for another 10 days two more

antibiotics. She got better for 4 days then sick again. She went for

a CT Scan of her sinuses and it revealed that after 35 days of meds

she was completely blocked. So they placed her in the hospital for IV

meds as the oral antibiotics made her ever so bad diarrhea even

worse. They tried to place a PIC line in her so she could go home,but

they could not place a line. So she went home on oral antibiotics.

for 30 more days, she got better for one week at the end, after a

week off the meds she was sick again, we did the 30 day treatments

twice after that. Again they sent her for another CT Scan, it showed

the same thing as the firtst one and she had an ear infection that

had not cleared after 30 days of meds, so they placed her on 10 more

days of another med. They also discovered she had hearing loss due to

Fluid behind her ears. She underwent surgery to place tubes, open her

sinuses and take out her adenoids. SHe had that done Oct. 10th one

week after her surgery she got sick again. NMow she has had 3 bouts

of croup amongst all of this. And now she has croup again. Sunday I

noticed she seemed so out of breathe playing and she had started

coughing, I figured let me watch and call the Dr monday if it hadn't

gotten any better. Well by 9:30pm sunday night she was so bad I

almost went to the ER. She could not breathe without sounding like a

seal. It was the worse breathing and cough I have ever experienced

with Croup. So first thing this morning she went to the PEd they

placed her on Orapred again.... She is not eating and that is Another

issue. She has been 23-24 pounds since march of 03. And we give her 1-

2 pediasures a day and she used to eat great now she won't eat

anything. She can't gain weight. I feed her fatty foods like the Ped

said and give her Pediasures. She drinks juice like its going out of

style and I tried cutting back but she dehydrates in a snap. the

Pulmonary Dr said depending on what the blood work showed he may want

to do a genetic CF test on her.

Has anyone else been through this?

Am I maybe missing something here?

I just want her to be better, we are going on 19 months of illness

and no answers.

November 10, 2003

You are certainly in the right place!

I am not of great help because my daughter was diagnosed when she

was 8 almost 9 years old, so you have a great advantage.

As said, don't ask demand a DNA test, one that checks for at

least a 1000 mutations.

The sooner you know the better it is for your child.

> Hi...I was referred to this board. My daughter is 19 months old. She

> had a sweat test that came back neative but has alot of symptoms.

She

> has gone to see a Pulmonary Dr that heads the Cystic Fibrosis

Center

> in South Florida. He is absolutely wonderful, he has ordered a

> battery of blood test as well as a checst xray. He feels her Immune

> System is Deficient. She was born one month premature but healthy.

> She had low blood sugar but that was it. She seemed pretty cranky,

> but as a mother of 2 i gave it no thought, just thought " oh boy,

this

> one is a crier " Well after a week of her screaming all the time,

only

> sleeping for 15-20 minutes at a time and throwing up her formula,

> diarrhea I expressed my concern to the Ped. They said " Mom, she is

> colicky " I thought...no this is way beyond colic. So I did some

> investigation on Formula and stopped breastfeeding. We tried Soy

and

> Holy Cow, she vomited every bit she drank and screamed even louder.

I

> then switched Ped's. One week after seeing the new Ped. they

> hospitalized her because her diarrhea had blood in it and she lost

> weight. She spent a week in the hospital on IV's, they said she was

> not absorbing the fat from her formula and she had GERD plus a milk

> protien allergy. So we saw a Ped Gastro. They placed her on

Alimentum

> and Zantac and reglan. it helped, but not for long. She then

> underwent Endoscopy, they said she had Esaphogaitis (inflammation

and

> corosion of her esophagaus) They placed her on Crafate and Mylanta)

> She seemed a bit better but the Diarehhea was horrendous. She then

> got a cold, no biggie...yeh right. She began gettign so congested

we

> had to suction her nose and irrigate it with Saline so she could

> breathe. She choked on her phleghm twice once requiring a trip via

> Ambulance to the ER where the suctioned her airways out removing

the

> phelghm. They tested her for RSV which came back negative. The Ped

> placed her on antibiotic, after 14 days she was still sick and

> running a fever of 101 for this entire time. they tried another

> antibiotic, she was allergic to it, than for another 10 days two

more

> antibiotics. She got better for 4 days then sick again. She went

for

> a CT Scan of her sinuses and it revealed that after 35 days of meds

> she was completely blocked. So they placed her in the hospital for

IV

> meds as the oral antibiotics made her ever so bad diarrhea even

> worse. They tried to place a PIC line in her so she could go

home,but

> they could not place a line. So she went home on oral antibiotics.

> for 30 more days, she got better for one week at the end, after a

> week off the meds she was sick again, we did the 30 day treatments

> twice after that. Again they sent her for another CT Scan, it

showed

> the same thing as the firtst one and she had an ear infection that

> had not cleared after 30 days of meds, so they placed her on 10

more

> days of another med. They also discovered she had hearing loss due

to

> Fluid behind her ears. She underwent surgery to place tubes, open

her

> sinuses and take out her adenoids. SHe had that done Oct. 10th one

> week after her surgery she got sick again. NMow she has had 3 bouts

> of croup amongst all of this. And now she has croup again. Sunday

I

> noticed she seemed so out of breathe playing and she had started

> coughing, I figured let me watch and call the Dr monday if it

hadn't

> gotten any better. Well by 9:30pm sunday night she was so bad I

> almost went to the ER. She could not breathe without sounding like

a

> seal. It was the worse breathing and cough I have ever experienced

> with Croup. So first thing this morning she went to the PEd they

> placed her on Orapred again.... She is not eating and that is

Another

> issue. She has been 23-24 pounds since march of 03. And we give her

1-

> 2 pediasures a day and she used to eat great now she won't eat

> anything. She can't gain weight. I feed her fatty foods like the

Ped

> said and give her Pediasures. She drinks juice like its going out

of

> style and I tried cutting back but she dehydrates in a snap. the

> Pulmonary Dr said depending on what the blood work showed he may

want

> to do a genetic CF test on her.

>

> Has anyone else been through this?

> Am I maybe missing something here?

>

> I just want her to be better, we are going on 19 months of illness

> and no answers.

>

November 10, 2003

Welcome ,

I am sorry to hear your baby has been so sick. It does sound like CF even if it

isn't. I think a genetic test sounds like a good idea. I don't have any

specific advice for you, I just wanted to welcome you and let you know you have

come to a good place. My daughter is 19 now and she did have a rough time at the

beginning before she was diagnosed. She was diagnosed by sweat test at 8

months, then placed on Pregestimil and enzymes and started improving and gaining

weight.

take care,

M

Mom of Nick age 21 nocf and age 19 wcf

November 10, 2003

,

I am so sorry to hear about the stuff you have been thru. You've had it

rough, that's for sure.

Does your daughter taste salty at all? CF children tend to taste salty.

Try licking her, I know it sounds weird but do it anyway.

Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, 21

mos. wcf