Re: misdiagnosis

[Guest guest]

For 9 years a was misdiagnosed with allergies, her nose was the

only place that CF was manifesting itself, then it moved to her

chest, that was in 2001, then again misdiagnosed with asthma, finally

in May 2002 at almost 9 years old, her lungs showed a small damaged

that looked like CF, final diagnosis. Since then she has done really

good, knock on wood.

Push your doctors as hard as you can, if you don't like them, find

another one. I know because of insurance issues sometimes is almost

impossible, but I was a passive parent, plus I do have to say a

was not classic, there was no reason for anybody to suspect cf. A

runny nose is not cf, no history of cf, she was a chunk, weight and

height was always in the 90% and 75% respectively, never sick.

I hope you find an answer, whatever it may be, it sure beats not

knowing.

Love to you,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> I posted yesterday about having my daughter tested for cf. In my

> post I said she was put in the hospital at 4 monts with RSV. I

> started thinking about when she was in the hospital, my dr. said he

> thought she had RSV, but when they tested her she was negative for

> RSV. So you would think all of her resperitory problems are

because

> of the RSV, but I'm not really sure that's what she had. Anyway,

> were any of your children misdiagnosed with RSV, asthma, or

something

> else before the cf was found? Thank so much for all your help.

[Guest guest]

My son was born with a meconium ileus and was still misdiagnosed.

He was born 9 weeks premature with blocked intestines. His

neonatalogist sent his newborn screen for cf testing and his test

came back normal. A sweat test was not done and dna testing was not

offered. We thought we were home free with the normal newborn

screen result. Zach's first year of life was very rough. Eating

every two hours until he was almost 4 months old, reflux, colic.

The only thing I could do for him was hold him all the time. At his

one year well baby check up I had it out with our pediatrician and

had him dna tested for cf. Since then Zach is a totally different

kid. He has learned to walk, can do sign language, and we love to

hear him laugh.

What I have learned from my crash course in cf is that this is a

very rare disease. The medical community I have dealt with was very

reluctant to admit their lack of knowlege and Zach suffered for it.

The neonatalogist, reflux doc, and pediatrician all missed it and

were convince I was an overreating first time mom.

Unfortunately our story is not the only case of misdiagnosis and

many children are misdiagnosed for years. We were lucky.

Sara - mommy to Zach 18 months wcf

> I posted yesterday about having my daughter tested for cf. In my

> post I said she was put in the hospital at 4 monts with RSV. I

> started thinking about when she was in the hospital, my dr. said

he

> thought she had RSV, but when they tested her she was negative for

> RSV. So you would think all of her resperitory problems are

because

> of the RSV, but I'm not really sure that's what she had. Anyway,

> were any of your children misdiagnosed with RSV, asthma, or

something

> else before the cf was found? Thank so much for all your help.

[Guest guest]

Sara... this sounds like 's first year.

He ate every 30 minutes to two hours; he had colic and projectile

vomiting for about five months. How do you breastfeed only to have

your child throw up so violently it hits a spot on the carpet three

feet away? It's not like you can immediately open a can of formula to

start over... I usually nursed while sitting on the sofa. After a few

ruined TV Guides, I learned to remove everything from the coffee

table...

had eight foul-smelling, bright yellow goopy bowel movements a

day. I used a cloth diaper only once and said, " Forget this, " and

bought a box of Pampers. Luckily, back in 1979, you could buy a

30-count box of Pampers for $1.63.

But this was before the days of disposables with elastic-band legs.

Now that would have been nice to have... think of all the little

pajamas I might not have thrown out. When I'd get him out of his crib

in the morning, sometimes he'd have that awful yellow goo all up

the back and down the legs of those footed pajamas and drawstring

gowns.

It seems I had him in to the pediatrician weekly for ear infections,

upper respiratory infections, diarrhea... but I was told " it's just a

virus, " or " it's just a cold. "

One time while my mom-in-law was babysitting for me, he had bloody

diarrhea. When I arrived to pick him up, she told me and she scared me

to death when she said, " You know when the calves get those bloody

scours, they always die. "

I immediately called the ped who said " it's just a virus and he

probably broke a little blood vessel. " He told me to stop formula,

give him Pedialyte and Immodium AD. I can't remember how long he was

on that stuff. I learned Immodium AD helped thicken the stools, and

the ped said okay, fine, just stay on it. Can you believe that? My

poor little guy was drinking Immodium AD in his bottles for weeks...

When was about three weeks old, I voiced my concerns to the

ped's nurse. She said, " You're a first time mother, aren't you? "

Why are people so insensitive?

Despite all this, thrived. He continued to gain weight and

grow, and he just had the happiest disposition and was so active

and inquisitive. At 10 months he had to have tubes in his ears

because the ear infections continued... After that, his health

improved dramatically.

Later, about the time of 's 4th birthday, he stopped growing,

became remarkably thin with a pot belly, bad gas, and that tell-tale

orange oil appeared... I lay down with him to read before his nap,

counting his respirations as he drifted off. He breathed so rapidly,

panting like a little puppy.

I asked his ped about allergy testing and he agreed we should do it,

" You'll see, " he said. " He'll be just like every other first born

Oklahoma son: he'll have allergies and asthma. "

Two months later I took him for a second opinion for asthma; which

that ped said was a possibility so gave us a thick red syrup --

alupent to help his breathing. The next week, I called that doctor

back to tell him I wanted tested for CF. He asked, " Why? You

don't have a family history, do you? And all those kids look like

their from Biafra, and doesn't look like that. "

I insisted so he agreed. Two days later we went for the test, and

later that afternoon we got the positive results.

was 4.4 years old, his sister had just celebrated her first

birthday two weeks earlier. By then, in his short life had seen

three different peds, an ENT, a pediatric allergist, and a radiologist

read the " asthma x-ray. " But no one, despite all classic symptoms,

recognized CF until I did the research and told the doctor to test for

it.

Makes you crazy, if you think about it doesn't it? But in our case,

the timing was right. I think God knew that if we learned about CF

early, then I probably wouldn't have had the courage to get pregnant

with . And I just cannot imagine life without my daughter. There

is a plan, often we just don't see it until we look up and say thank

you.

Kim

Mom to , 24 with cf and asthma, and 20 1/2 asthma no cf

-- " dwson2 " <sara@d...> wrote:

> Zach's first year of life was very rough. Eating

> every two hours until he was almost 4 months old, reflux, colic.

> The only thing I could do for him was hold him all the time. At his

> one year well baby check up I had it out with our pediatrician and

> had him dna tested for cf.

[Guest guest]

My daughter's doc was sure that she had asthma and allergies. she had gotten us

in with an asthma allergy doc (I couldn't get an appointment myself for more

than a month away) who is a top guy in the area. She ordered a sweat test a

few days before the appointment was to take place because she felt that the

other doc would order it anyway. had been losing weight since she

started getting the " allergy and asthma symptoms " Many kids are misdiagnosed

for a long time.......

misdiagnosis

I posted yesterday about having my daughter tested for cf. In my

post I said she was put in the hospital at 4 monts with RSV. I

started thinking about when she was in the hospital, my dr. said he

thought she had RSV, but when they tested her she was negative for

RSV. So you would think all of her resperitory problems are because

of the RSV, but I'm not really sure that's what she had. Anyway,

were any of your children misdiagnosed with RSV, asthma, or something

else before the cf was found? Thank so much for all your help.

[Guest guest]

Your stories about your first year sounds like our also....BUT we knew Traci

had CF. I couldn't imagine going through it all and not knowing why. Thank

goodness most children are diagnosed sooner.

Lynette Carwana