Re: new...confused...help!!SUPERMOM!

[Guest guest]

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.

>

>

>

>

>

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> 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.

>

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