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Cystic Fibrosis Message Board


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Hi... New here.. I have 3 kids, ages 9, 8 and 16 months. My 9 and 8 year old are very healthy kids. My 16 month old well I can't remember the last time she was compelety well. I have just accepted the fact that she is always sick. It started when she was born at 36 weeks. But she seemed healthy. They informed me later that morning that she had to stay in the hospital as her blood sugars were very low. After a week though she came home. She was perfect. Until 2 weeks later. She started screaming, thrashing about, vomiting, diarrhea. At 6 weeks her Dr admitted her to hospital for severe dehydration, and blood in her stools. They ran tests and told me she had a milk protien allergy and GERD. She was referred to a GI dr who starte her on Zantac & Reglan. We spent every week at the Dr office. And boy did the after hours of the Peds office know me by first name. I was stressing. She was not getting better. We switched formulas to a Soy and she flipped out. Then we settled in with Alimentum, that seemed to be ok. Then we faced the weight loss issue. So weekly weight check it was. Then the doses of Mylanta began as her meds were not working and the Reglan was causing her to be stiff and ridged. The GI ordered a Endoscopy at 4 months. It confirmed that she had Esophagaitis. So she started Carafate. That was a dream, but Dr said it was only short term. Through all of this she had to be taken out of school as they could not handle her illness. My mom cared for her at home. Her diarrhea was still so bad she went into the ER 3 x for dehydration. She started to get very congested, and have this god awful runny nose and horrible wet cough. We had her on meds for a sinus infection for 28 days no change. They gave her meds for the cough no change. They switched meds and tried new meds. She deydrated very badly from the diarrhea and once again had IV to replenish fluids. FINALLY after 3 1/2 months of meds and sickness, they did a CT Scan of her sinuses and it revealed a very acute sinus infection. She was placed in the hospital for 4 days to undergo IV antibiotics. She seemed to get a bit better. They tried to place a PIC line in her and that failed. So she went home adn had to go to DR daily for Rocefin shots in her thighs, that was absolutely horrible. Then we had to give her another 28 days of oral meds. That made her better for no joke one week. She got another runny nose and still a nasty nasty cough. So now we are once again facing her with a sinus infection and a wet cough. They gave her meds for the cough but it did nothing, they have her on Clindomycin and Omnicef and not doing a thing. She goes Tuesday for another CT Scan and had an allergy test done 2 weeks ago that revealed she is allergic to nothing. Dad and I are wondering if more is going on with her. She was eating fine but losing weight and they had her on Pediasure to gain weight. Granted she is losing weight but she doesnt look sick, just tiny. But she was eating soo much we laughed how much she could eat, she ate an adult size portion for 3 meals and drinks enough juice to sink a ship. So we could not understand why she was losing weight. Now she is basically refusing food and only wants to drink. We tried to cut down the drinks to see if she would eat but no, she shakes her head no at food. I am soo beside myself and honestly CF has crossed my mind after runing into a parent with a child who had CF. SO my question is am I being outrageous asking dr to test her for it. I just can't stand going through this and having no idea what it is that makes her so sick...

any help or advice is well needed...
thanks!!





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