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November 21st, 2010, 10:18 AM
Join Date: Oct 2010
Originally Posted by
Danny was tested for Cystic Fibrosis, Celiac's Disease, and Immune System Deficiencies multiple times. He had several sweat tests done, 12 endoscopies, one colonoscopy and dozens of blood tests done. When he was 9 months old the longest he had gone without having an illness with a fever over 102 was 9 days. When he was 11 months old he finally went 11 days without one and after that he finally got longer and longer gaps between illnesses. Now he can normally go about a month without getting sick. He gets croup several times a year and is normally on breathing treatments at least 6-8 months out of the year. He has not officially been diagnosed with asthma because they already have him on Singulair for Reactive Airway Disease. He got croup the first time when he was 2 months old and then got the flu when he was 6 months old so he was on treatments every 3 hours for about 8 months and several rounds of steroids. He was finally diagnosed with a digestive enzyme deficiency which caused almost all of the problems, including the FTT and several of his food intolerances. He is doing better in every department but lung/breathing. The Asthma/Allergist's office knows him by first and last name, birth date, and know his favorite animals. They even notice when I get my hair cut. We are there WAY too much.
So basically, yep, I know how you feel.
hello. its nice to hear stories similar to ours. we never went into gi testing because nyla doesnt have gi symptoms other than refluxing which causes aspirating which in turn causes more damage to her already fragile lungs. fevers have never been an issue for her, mostly because her immune system doesnt react properly and a fever is an immune response or so we are told. we also use singulair daily with flovent for prevention. when that is not enough we double the dose of flovent, and when that fails we add a 5 day course of prednisone and when that also fails, its off to the hospital. gotta love that. we have been able to switch from the neb to the chamber which is so much easier and faster to use, but still keep the neb around. after she has been to the hospital we generally switch back to the neb, but with the chamber we can deliver more medication. we can use 4 puffs of ventolin every 15 minutes 4 times in a row, and if that doesnt work its off to the er. that is what the pulmonologist told us to do; and you simply cant do that with the neb. she has been tested for allergies, and it was negative, but they did a blood test and said even though it was negative she could still have 'clinical' allergies. i honestly have no clue what that means since i have never had to deal with allergies before, but they did try her on zyrtec and it made no difference. using prevacid to control the aspirating has helped greatly though.
how is winter time for your lo? its terrible for us. im glad to hear your lo is showing improvements. it has been such a long uphill battle for us. i feel your pain; its so hard to see your lo suffer and have to give them so many medications. sometimes life just isnt fair i guess. nylas younger brother was born earlier and smaller than her and he doesnt have near the problems she has. while i am very greatful for this, i really dont understand.
Big thanks to KimberlyD0 for my amazing siggy
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