New..Testing 18 month old for CF

[Guest guest]

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