Re: New..Testing 18 month old for CF

October 6, 2003

In a message dated 10/6/2003 7:43:28 AM Central Daylight Time,

supermom1820@... writes:

I have three daughters and two of them have CF. My oldest was 6 years old

before she was diagnosed. The doctors ignored all of they symptom's. So don't

give up!! CF or not MOM " S KNOW BEST!!! DON'T GIVE UP!! If it wasn't for my

oldest

having polyps I am sure we still would know today that my girls have CF. They

kept telling me that they had asthma and they would give us albuteral and it

did nothing for my girls. You will feel much better when you get the test

results. Make sure they use the Ambry test it is the only test that will detect

the most CF genes. Deb A

October 6, 2003

Hello . While cf can be bad, it isn't as bad as your child being

constantly sick and undiagnosed. Make sure you have her sweat test done at an

accredited cf center. If it does happen to come back negative, push for genetic

testing.

Dawn mom of 4, 7 and under, the youngest wcf

October 6, 2003

Hi ,

Welcome to our list. It absolutely boggles my mind

that doctors are so reluctant to test for cf in the

face of overwhelming evidence! Your daughter does

have classic symptoms, and as much as we all hope for

the best that she doesn't have cf, we also hope that

if she does, she is diagnosed quickly and can begin

the treatment that will make all the difference in

her health.

There are other conditions that can mimic cf, and

if cf is ruled out, tests for those diseases and

conditions could and should be investigated. Just make

sure you go to a respected CF center to get the

sweat tests done. There is an art to them, and many

places that do not have expertise in CF don't do them

correctly. Also, in infants, some CF centers try

the blood test first to see if there are two cf

mutations, rather than try to get sweat from a

baby. At 18 months, though, you're probably looking

at a sweat test.

If you go to the CFF website, www.cff.org, you can

look up a CF center closest to you.

Good luck,

C

Mommy to Mick and Alli, 3.5 yo twins wcf

--- wrote:

> Hi, I am new here and we are having our 18 month old

> tested for CF

> next week. She has been sick since birth. And though

> she has seen

> numerous Dr.'s, I feel they are only doing what they

> need to be

> doing. We hasve had several people ask us if they

> ever ruled out CF.

> That began my thought process. So we finally fought

> to get the test.

> She was born basically healthy, just had low blood

> sugars. She was

> hospitalized at 6 weeks because she was losing

> weight and had

> diarrhea with blood. They said she was not absorbing

> the fat from my

> breatmilk and put her on a special pre-digested

> formula. They also

> informed me she was anemic. SO after a week she got

> to go home. She

> saw a GI and he diagnosed her with Reflux. Well

> through the Zantac,

> reglan, and carafate, nothing seemed to help. She

> had Endoscopy at 4

> months and he said she had Esophagaitis. Then she

> began coughing and

> becoming very congested in the sinuses. They placed

> her on antibiotic

> augmentin. It did nothing, So they tried OTC cough

> syrup. Well in OCt

> she got very bad and while just sitting in her

> walker she began the

> most horrific choking spell I ever witnessed. I

> freaked out she was

> turning blue and called 911. They came right out and

> said her lungs

> sounded hazy. We rushed her to the ER, where they

> tested her for RSV,

> and it came back negative. They then cleared her

> airways out so she

> could breathe better and sent her home. I followed

> up with her Ped.

> and they said, ohh she probably just had some

> salivia go down the

> wrong tube. Even though she was still sick. So after

> a week they put

> her on more meds. Finally in December I started

> flipping out on them,

> she was on meds and running a fever of over 102.

> They switched her

> meds, after Christmas, she still was no better, they

> ordered a CT

> Scan of her sinuses. On Jan 2 she had them done, the

> next day the Dr

> called and had me take her to hospital where she was

> admitted, her

> sinuses were completely opacified/blocked. They gave

> her IV

> antibiotics and were going to place a port in her so

> she could have

> IV meds at home for 30 days. They failed. No one

> could get one in and

> they wound up puncturing her artery and so we had to

> stay and watch

> her arm. She went home with 30 days oral. Now on top

> of all this she

> had been fighting diarrhea. and not gaining much

> weight. Well in

> January we got her up to 21lbs. yehh. Well we still

> battled this

> congestion, cough, croup. And even more meds. She

> had another CT Scan

> Spet 2 after 30 days of Ceftin and Clindomycin. The

> results were

> complete opacification. So we went to see and ENT at

> the children's

> hospital. We then discovered she had major fluid

> behind her ears with

> hearing loss. So they scheduled surgery for Oct 10th

> to plpace tubes,

> and open her sinuses and shave her adenoids. The ENT

> said after the

> surgery she would want to test her for things like

> an immune

> deficency because cannot stay well off meds.

> Well at her 18

> months check up Wed. she only weighed 22 lbs, ahe

> has been the same

> weight for 8 months and only has grown 11 " since

> birth. The Dr was

> concerned but said maybe she was burning off alot of

> calories chewing

> because she can't breathe. I tried to explain i

> respected that theory

> but she happens to be a garbage disposal and on top

> of eating steak,

> chicken, pasta, veggies, and everything else we give

> her 2 pediasures

> a day because we have been battling the weight

> issue. He said well

> let me see her after surgery for a weight check. It

> was then that we

> said we wanted her tested for CF, if anything lets

> rule it out. And

> while we were at the Dr office she had a cough fit

> and began that

> choking again. I mean its horrific she coughs and

> then chokes with

> this god awful gagging sound and turns soo red and

> even purple.

>

> I hope I am not freaking out but from everyone's

> experience. Can

> anyone guide me here.

> I am so lost and so scared for my baby.

> She is the baby of 4 of our kids and it is so hard

> to understand this

> and explain this to my older kids.

>

> Thanks

>

October 6, 2003

,

It is very scary when you are at your wits end and she want your baby to

feel better. We went through some things similar to this for 5 years before

our doctor finally said lets do this sweat test. We had been to

gastrointerologists, ent's, she had barium x-rays. You name it. When she

was finally diagnosed and started taking enzymes then she finally started to

loose the dark circles under her eyes and putting on some weight and lost

the Ethiopian belly. When she was about your daughters age, she could eat a

whole ream of Ritz crackers in one setting. She ate non stop I think. That

is the only thing that kept her about normal weight. Don't be discouraged,

Keep up the quest to find an answer. No one here wants another child to

have CF, but if she does you have found a great support group here. In our

case, a positive diagnosis made all the different in the world. My daughter

in now almost 18 years old and is doing great. She was in the hospital for

the first time this past June for a tune-up. Good luck on your quest.

Tina W., mother of , almost 18yoa wcf

New..Testing 18 month old for CF

Hi, I am new here and we are having our 18 month old tested for CF

next week. She has been sick since birth. And though she has seen

numerous Dr.'s, I feel they are only doing what they need to be

doing. We hasve had several people ask us if they ever ruled out CF.

That began my thought process. So we finally fought to get the test.

She was born basically healthy, just had low blood sugars. She was

hospitalized at 6 weeks because she was losing weight and had

diarrhea with blood. They said she was not absorbing the fat from my

breatmilk and put her on a special pre-digested formula. They also

informed me she was anemic. SO after a week she got to go home. She

saw a GI and he diagnosed her with Reflux. Well through the Zantac,

reglan, and carafate, nothing seemed to help. She had Endoscopy at 4

months and he said she had Esophagaitis. Then she began coughing and

becoming very congested in the sinuses. They placed her on antibiotic

augmentin. It did nothing, So they tried OTC cough syrup. Well in OCt

she got very bad and while just sitting in her walker she began the

most horrific choking spell I ever witnessed. I freaked out she was

turning blue and called 911. They came right out and said her lungs

sounded hazy. We rushed her to the ER, where they tested her for RSV,

and it came back negative. They then cleared her airways out so she

could breathe better and sent her home. I followed up with her Ped.

and they said, ohh she probably just had some salivia go down the

wrong tube. Even though she was still sick. So after a week they put

her on more meds. Finally in December I started flipping out on them,

she was on meds and running a fever of over 102. They switched her

meds, after Christmas, she still was no better, they ordered a CT

Scan of her sinuses. On Jan 2 she had them done, the next day the Dr

called and had me take her to hospital where she was admitted, her

sinuses were completely opacified/blocked. They gave her IV

antibiotics and were going to place a port in her so she could have

IV meds at home for 30 days. They failed. No one could get one in and

they wound up puncturing her artery and so we had to stay and watch

her arm. She went home with 30 days oral. Now on top of all this she

had been fighting diarrhea. and not gaining much weight. Well in

January we got her up to 21lbs. yehh. Well we still battled this

congestion, cough, croup. And even more meds. She had another CT Scan

Spet 2 after 30 days of Ceftin and Clindomycin. The results were

complete opacification. So we went to see and ENT at the children's

hospital. We then discovered she had major fluid behind her ears with

hearing loss. So they scheduled surgery for Oct 10th to plpace tubes,

and open her sinuses and shave her adenoids. The ENT said after the

surgery she would want to test her for things like an immune

deficency because cannot stay well off meds. Well at her 18

months check up Wed. she only weighed 22 lbs, ahe has been the same

weight for 8 months and only has grown 11 " since birth. The Dr was

concerned but said maybe she was burning off alot of calories chewing

because she can't breathe. I tried to explain i respected that theory

but she happens to be a garbage disposal and on top of eating steak,

chicken, pasta, veggies, and everything else we give her 2 pediasures

a day because we have been battling the weight issue. He said well

let me see her after surgery for a weight check. It was then that we

said we wanted her tested for CF, if anything lets rule it out. And

while we were at the Dr office she had a cough fit and began that

choking again. I mean its horrific she coughs and then chokes with

this god awful gagging sound and turns soo red and even purple.

I hope I am not freaking out but from everyone's experience. Can

anyone guide me here.

I am so lost and so scared for my baby.

She is the baby of 4 of our kids and it is so hard to understand this

and explain this to my older kids.

Thanks

October 6, 2003

Hi,

Oh, wow. That sounds so much like our first nine months. was diagnosed

at nine months. I wish they had tested her for this earlier. I hope and pray

that it is not CF but it sure sounds familiar. We are here to help if it is CF.

Good luck.

Mom of , 5 on Friday with CF

Visit http://groups.msn.com/TeamJane to read our story