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Cystic Fibrosis Message Board


Cystic Fibrosis Board Index


Thanks for your reply and there's no such thing as "blabbing" I really appreciate your sharing and candidness it is refreshing. Well, since my last post my daughter was again admitted at the clinics insistance for two more weeks until the 17th of august funny, last time it was til the 17th of march st patty's day that she was discharged...She was determined to indeed have and allergy to aspergillus and it was present in the lungs, to say the least Iam angry and discouraged to know I cannot be heard. I fought for approx 7 months to have her tested for a mold allergy but to no avail. No one even acknowledged that there were numerous conversations about mold being a concern once the mold was determined. My daughter suffered needlessly not to mention all the hell the whole family endured during her admissions...we are 2 hours away from childrens hospital in calgary. Her ige levels were almost 2000 and she "instantly" reacted to the skin prick test for aspergillus. I have felt inadequate as a mom and caregiver because of the aspergillus allergy. I feel terrible for my daughter but if nothing else they are realizing that they should sometimes think outside of the box and actually think creatively more often. They are very intelligent doctors obviously but there needs to be more accountability on their part. They kept leading me to believe that I was not doing enough to help her when they should have been holding themselves more accountable for the answers ( I use naturalpath to complement western meds and they are very aware of that) To kind of answer your question about what led me to believe she had a mold problem all I can really say is that I felt what she was feeling Iam more connected to my daughter than any other human being and I would listen to her struggle to catch her breath but it wasnt asthma I knew that much because she acted like something was sucking the breath out of her but not wheezing if you can picture that. She lost almost 8 ibs in 5mths and she only weighed 36 lbs to start with at 6 yrs old, and had no appetite she couldnt even walk one block without needing to sit down and cough up half a lung she was up ALL night coughing. It was not not normal cf stuff she was experiencing even for cf she was not doing well at all. The bug she had present (not an infection) was staph....Also, antibiotics can inadvertanly cause allergys it is a proven fact so dont let anyone tell you they dont they do! iv antibiotics lower anyones immune capabilities so take care to get a really good probiotic and milk thistle for the liver as well as aloe vera juice (you can get the kind with no taste at all)...my daughter has a great liver function tests and gastrointestional exams... they dont like to admit this about my daughter but they even let me administer these things when shes admitted to hospital for 2 weeks at a time...Ive have respirologists tell me to keep doing what im doing because he "could swear he was listening to pefectly normal lungs" (mold issue not withstanding) we need to do what we can to prolong life and not just prolong but to make it meaningful and healthy no matter cf or not. I give the glory to God that my daughter is relatively healthy she is a testament to the healing powers of our great earth that our Creator made for us. I use both western medicine and God's medicine for 4 years now and have had great results. Your other question about mold causing pseudomonas is somewhat troublesome ...do you have hyper-IgE syndrome (HIES) if so dig around to educate yourself and if not take due care because if mold is present in your environment to a significant degree especially and you have cf more than likely it is going to turn into an allergy in which case iv meds will clear up the cough symptoms short term but will ultimately in my experience exacerbate the long term side effects. If your symptoms dont add up jump up and down and cause a stir until someone listens because the way I see things is why not humor the parent or patient and give them a silly little test to placate us if nothing else...I mean really they have given my daughter ct scans ex-rays, blood workups, mri's the whole shebang but not one little skin prick test and IgE test. Good luck with your pregnancy and God bless I thank you again for responding ....now who is "blabbing" and you are correct Iam the one who will answer to my daughter at some point and I want to be able to say I did what I did to give you a better healthy life.





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