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

[Guest guest]

Thanks for replying, she doesnt seem to have any more issues with the

Esaphogitis or the Reflux anymore. Now we deal with constant colds,

sinusitis, coughing and/or croup, not gaining weight, and chronic

diarrhea.

> Controlling the esophogitis, usually with what is called

> a proton pump inhibitor, is usually what keeps them from

> inhaling the contents of their stomachs, then vomiting same.

> Unfortunately, some proton pump inhibitors can cause

> diarrhea; my research tells me that Aciphex is a very safe

> one--but, of course, this is not medical advice, just what

> my g.i. doc and my cf kid's advice has been--and has wor

> ked--so far--best of luck and highest hopes.

> n Rojas

> 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.

> >

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

> >

> >

> >