new...confused...help!!

[Guest guest]

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.