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Old 07-20-2010, 11:23 PM   #1
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Exclamation CF and lung molds

Hello, I am wondering if anyone has experience or knowledge of cf children and molds present in the lungs. I suspect my 6 yr old daughter is suffering from the effects of a mold in her lungs but when I questioned her clinic doc he said that yes its possible that a mold could cause her symptoms but that basically the clinic did not really know much about the effects of molds on the cf lung because it frankly was not their focus or priority to explore it. She was in hospital for 2 wks at their behest in the very beginning of march of 2010 and they want her back and have wanted her back for about a month now for another 2 wks. Her bronch in march did culture asperg mold but she was not treated for this and I was effectivly shut down when I presented the topic of molds. Please, has anyone got anything to add to the question of molds and the possible role they could play in the health of a cf lung????...I do not want to have her in hospital every 4 or 5 months like her docs want her to be if it isn't completly necessary. She's lost almost 8 lbs since being released and about a month after her discharge she started coughing all night again and her appetite diminished quite significantly. I really need some insight please.

Last edited by jjscott0521; 07-20-2010 at 11:28 PM. Reason: missed words and added some pertinant info

 
Old 07-21-2010, 09:27 AM   #2
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Re: CF and lung molds

I don't have experience with this, but know of others who have had decreased lung function (PFTs) and it's been determined that they've got issues with mold or fungus. If there aren't symptoms I think they usually don't treat it; however, it sounds as if your child is having issues.

Where are you located. I know Denver's Jewish Hospital has studied and treated molds and fungus extensively.

IMO, I'd be concerned that your doctors aren't being proactive and are risking damage to your child's lungs. Are there any other clinics or doctors in your area you could go to for a second opinion or further testing?

In any event in sounds as if some sort of infection is brewing based on symptoms, so at the very least I would schedule an appointment for a sputum culture to see what's going on. Could be she's growing some other cf bug and needs antibiotics.

Last edited by Ratatosk; 07-21-2010 at 09:28 AM. Reason: addition

 
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Old 07-22-2010, 12:35 PM   #3
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Re: CF and lung molds

Thanks for the reply, she may very well have other bugs in her lungs but I really was hoping they would explore the mold issue with her. We live in Canada and we drive a couple hours to the cf clinic in our area and there is a team we see each time we go there. They are all great professionals that strictly treat cf children however, I feel I am not actually being heard. The bug they found in March was common to cf and so she was treated for it but my intuition tells me that it was not the whole reason she was ill and when I pressed about the mold that was found they literally ignored it and I find it very suspicious that she started coughing & losing weight so quickly after discharge. I am frustrated because she is my daughter and I want to do right by her so she has a better chance at health down the road. It seems one visit they jump all over what I have to say about what I experience with her at home even going so far as to admit her for 2 weeks ( which concerns me because its too big a responsibility at times) then the next time I feel I am placated and my experiences with my daughter mean nothing in their opinion. I just wish I knew how to treat a mold on my own.

 
Old 10-01-2010, 06:58 PM   #4
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Re: CF and lung molds

Hi, do you mind me asking what the bug they found in March was? The reason I ask is because for the last year I have been exposed to household molds from leaking pipes and neglence of cleaning it up, which I had no idea about, and now I have developed a bug that is also common in CF patients. I will probably spell it wrong but I'll try, Pseudomonus. Now, its not a mold in my lungs but I feel I have developed the Pseudo from being exposed to molds that developed from leaking pipes and neglence of cleaning it up from my condo corportation. I also live in Ontario, Canada.

What kind of symptoms does your daughter have? I know you said you feel your daughter has a mold in lungs, but what would make you think that? I am just trying to get some facts to help. The pseudo that I am talking about is a nasty bug and it causes alot of issues. Ever since I have had it in July 2010 I have been on IV antibiotics 2x, the reason they probably chose IV is because I'm 7 months pregnant with triplets. This bug has literally made my life hell. Im 24 now, and I do the best I can to take care of myself, but sometimes your right I feel as if my CF team does not listen to me or my opinion on what is going on. Unfortunately for me, back in July I was extremely sick and my doctor did not listen to me when I told her how ill I was, she kept pushing back and sending me home telling me to use my nasal spray and so on. About one week later I ended up in Emergency because I decided I had enough of her and telling me how wrong I was. Sometimes they make you feel like your an idiot, and you really dont know what your talking about. I pushed and pushed. Like I said I went to emerg and go figure I had Pneumonia. Now I have switched to her collegue because I feel she does not listen. Whenever I am sick now, she trys to help but I have let her know how I feel.

I think your best bet is to push and push. At the end of the day, your the one who has to live with your daughter being sick, and you know you want the best health for her as you said previously. So who cares what they think, push until your happy with the answers. If your never happy, switch to another doctor and tell them how you really feel.

Sorry to blab about myself, I just wanted you to know my experience because u deserve to know whats going on with your daughter.

Hope this helps
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Kerri
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Born October 10th 2010

 
Old 10-01-2010, 11:29 PM   #5
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Re: CF and lung molds

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 ***** 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 ***** 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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