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Uncontrolled Asthma

Hey folks, 

I was advised I should share my story about my lady Payton and her situation here with you folks.  Perhaps you have insight or maybe just some support.

Payton is my 7-year-old daughter (1st grader) who has uncontrolled, severe asthma,  She was diagnosed when she was 3 years old.  I honestly don't recall what it was that started her path on the asthma journey because she has always had health complications (more in her kidneys – 4 surgeries before the age of 3).  She also has eczema (mostly on her arms) although it isn't as bad as she has gotten older – but she is an obsessive itcher now and almost always has scabs on her nose from her habitual itching.

Anyway, more to the present – She doesn't have any allergies. She has had numerous allergy panels and they have checked her IGE levels during hospital admits ( 4 in the past 6 months alone in addition to numerous ER visits and specialist appointments) to see if the numbers are high but have discovered her numbers are oddly very low (doctors have informed me they have actually had to do some research to see if this was significant as they haven't seen numbers so low – not significant as it turns out just super human anti-allergy kid I guess). No one knows what her triggers are. It's why her asthma is so uncontrolled. She sees an asthma/allergy specialist, a pulmonologist, an endocrinologist  (to see if the constant steroids they put her on have impacted the functioning of her adrenal glands – they said they don't want to see kids on steroids more than twice a year, Payton has been at least 5 times already and it's only May), and an asthma plus team  (for severe allergy cases). This doesn't include her urologist for her other issues she deals with. 

She just had a sweat test to see if she had cystic fibrosis in addition to her asthma, and we were able to rule it out. 

Today she is going in for a broncoscopy.  They should have answers within 2 days.  if anything, they said it will tell us what it isn't.  

It's a pretty exhausting process.  I've only ever seen her triggered once by loud noises and that sent her into an asthma attack – apart from that it just seems to come on for no apparent reason.  

Anyway . . . that's Payton.  She's an awesome, brilliant little girl.  She is obsessed with learning and hates missing school but she has absolutely horrible attendance due to this problem of hers.  She is obsessed with people being kind and honest with eachother.  You couldn't ask for a better kid.

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  • Pljohns

    Welcome to the board-you will find wonderful people here with lots of insight and experiences to help you out.  I understand about your daughter-I have severe uncontrolled asthma with clear allergy and IGE levels as well.  It was adult onset 6 years ago.  After a battery of tests, what I have been told is that 95% of all of the people in the world have asthma as a result of an allergic reaction to something.  The other lucky 5% of us have non-allergic asthma.  Because there are no allergies, there is nothing to avoid and there is no medication on the market currently to control it.  I've had to learn triggers over time and by keeping detailed journals.

    In 6 years, the only things i can tell for sure are cold air (either AC or wind) and some strong smells, but they aren't always the same strong smells, and weather changes.  It is frustrating not know what will flare it off at any point in time.  

    My immunologist told me 5 years ago that there was medicine in the pipeline for this type of asthma, but it was at least a decade away here in the US-it is a biologic and they scare me to death, but I desperately need something to help with this.

    Let us know about her test outcomes. She sounds like an adorable kid!

  • K8sMom2002

    Hi, Payton's Mom! And yes, this IS a great place to share tips and tricks and encouragement. 

    I say to PLJohns' most excellent words above … one thing that has helped us tremendously was keeping a detailed journal of triggers to help figure out what causes our symptoms.

    It is absolutely amazing how, after enough data points, a pattern will begin to emerge, even when it doesn't resemble "text book." 

    PLJohns has started a , which helps track data on a daily basis. Here's the that she was referring to. That might be something to talk with her doctors about. 

    I'm really, really hoping today's tests will help give you some answers! Fingers, toes and eyelashes crossed and big prayers! Sending good your way! 

  • Payton's Mom

    I hope it provides answers too, but I already feel resigned to the fact that it won't. I will be extremely surprised if anything of use actually comes of this. 

  • K8sMom2002

    Hugs, Payton's Mom! I've been there where you find yourself hating that "within normal limits" result from a test. It's not that I wanted something to be "wrong" with my kiddo – I KNEW something was wrong; I just wanted to know WHAT was wrong. 

    Hopefully the test has gone smoothly and will give you and your medical team the answers to form a plan! 

    Keep us updated!

  • Payton's Mom

    Well, they did their flexible bronchoscopy with bronchioalveolar lavage and ciliary biopsy. They went down and found no obstructions. They noted it was pale but that was not uncommon for those with asthma. The took samples from her nose and the place where her lungs branch off from each other to run bacterial cultures. We should have results in 24-48 hours. We should have results from the ciliary biopsy in about 2 weeks. *Sigh* So as it stands, still no answers. The pushed fluid on her lungs. They were able to pull 30% back out of her right lung and only 15% out of the other. They said her left lung was quick to fold in . . . I guess that isng concerning?  

    Anyway, she did great. She usually does. She is hard core and amazing.

    Tomorrow we start having home visits with an asthma specialist on what, I believe, will be a weekly basis.

  • Shea

    Hi Payton's mom, welcome to the forum. She sounds like a great kid, I am so sorry about the stuggle with health problems, and I hope you find some answers and insight into what could be causing the flares. There are a few things that came to my mind in hearing her story. One is prednisone can mask inflammation, and alter all Ig levels, including IgE levels (),  and if on more than 20mgs recently can alter skin prick tezt for allergy (

    So, depending on the amount of prednisobe she is/was taking at the tine of these tests, it could be altering her results and making it more difficult to pinpoint her triggers. 

    My advice is to work with your doctor to get her to the lowest safe dose of prednisone/inhaled steroids for her, try to have as neutral/ allergy-free environment as possible in the home, and then journal AND do skin allergy tests again.

    Because the things that develop into allergens for people are typically things that are lung irritants anyways but that the body learns and tries to control on its own with its inflammatory response it is a good idea to minimize them in the home environment of any person struggling with health conditions, weakened immune system, or inflammatory conditions. It is not going to hurt a non-allergic person to lessen allergens and lung irritants in the home that is for sure. It wosuo really help a person whose allergies are masked by medications to come off those medications without causing a flare, and it can help then to skin test and confirm which irritants are the big ones to avoid if they are causing allergic reactions.

    A HEPA (non-ozone) air purifier in the bedroom is a good idea because it will help filter toxic particles that affect people not just with allergies, but anyone with inflammation, weakened immune system.

    My asthma symptoms are always less in my own home than in other peoples homes, and I attribute that to my not furry or feathered pets, frequent cleaning with green products, vacuuming with hepa or water vacuums, washing sheets, curtains, and pillow cases in hot water weekly, and air purifiers. 

    Of course, I do have allergic asthma and allergies, both of which improve on steroids and trigger more when lowering on steroids. But, I am telling you, enough dust will irritate anyone, strong chemicals, or even some people who do not have allergies are irritated when pollen counts get high enough, or when there is enough mold its toxins will affect most people. All of those things carry on per dander, in addition to other bacterias and  funguses. So I would think, even with non allergic asthma, these are good things to avoid in a home environment. 

    (also, in my readings i discovered the right lung is larger than the left, I dint know if that is why it performed differently on the test). 

    () has that info bout lung size and interesting info about different irritants that cause asthma and other health problems.

  • Shea

    ooops i guess I didnt paste my citing for the over 20mgs prednisone possibly altering an allergy skin prick test, here it is:

  • Pljohns

    Super good advise Shea-I have non allergic asthma and do pretty much the same thing.  I'm not as diligent as you are but things stay clean, I don't use cleaners except toilet bowl, steam mop, hepa filter vaccume and hepa filters in the AC/furnace plus a stand alone one.  You are so right-i'm not allergic to pollen but when the counts are up, I have problems too.

  • K8sMom2002

    Payton's Mom, fingers crossed and big prayers that some answers — and context — will be coming shortly. Will you have a chance to talk in depth with her doctors about the test results and what they mean?

    Shea, I'm always so impressed with your diligence! 

  • Payton's Mom

    I hope to have the chance to talk with them, but I imagine it will be the typical "everything is normal" nonsense. 

    I am a clean freak, but I don't think I know enough to know how/what to clean to help her. Our home visits with the asthma specialist for the next couple months should help with that  (I look forward to learning more). 

    If I'm being honest, when she was first diagnoses with asthma it was never taken very serious with us because she was undergoing a series of major surgeries with her kidneys at the time, and we were so focused on tracking urine and everything for a couple years that I never buried myself in the literature like I typically do (ask me about kidneys, ureters, bladders though and I can write you a book on her problems). Her asthma was never serious then. We took her controllers as directed, and she stayed out of the hospital. It's been getting worse as she has been getting older though. Now kidneys are currently functioning (knock on wood) and lungs are taking a bigger poop on her. *sigh* Its time I start learning a lot more. Already everyone in this forum has proven to be a wealth of knowledge. 

     

     

  • Jen

    I hope that the tests will provide some answers or direction and that the doctors will have some ideas on what to do to help.  Hugs~

    As for cleaning and what you could possibly do differently, that may be something you'll have to take a close look at to see what could potentially be causing issues.

    Here is  a list of  products that may be helpful.

    We also have a thread on  that might give you some ideas on ways to clean that don't irritate your daughter's asthma (if that indeed is one of her triggers).

  • K8sMom2002

    Payton's Mom, hugs, and don't beat yourself up because it sounds as though you have been handling lots of tough, critical things in the order of priority. I'm glad her kidneys are working better! 

    And this forum is a great one to learn about asthma — I've learned so much! I'm hoping that the doctors will work with you and dig down to figure out what's going on.

    As for housecleaning, to what Jen suggested — lots of good tips and tricks over there, and I'll bet I can pick up some more from you!

  • Shea

    Great links Jen! PLJohns that sounds great level of cleaning, I really want a steam mop! (i just have a regular one right now and use Myers cleaning products because I like the essential oils eucalyptus and lemon and it says it doesnt use harsh chemicals.. my lungs prefer it to the chemically smelling cleaners–but some people just use vinegar and baking soda), of course the steam mop uses hot steam, so you do not have to worry about chemicals then. And K8Smom advice is right, Peytonsmom, dont beat yourself up or overstress because learning asthma triggers is a process, and finding a way to implement these new things into your life takes time and practice, at least it did/does for me, and I am certainly not perfect, I just focus on what I can do, and I try. I think it is awesome that an asthma specialist is coming to your house, it sounds like itd be really helpful. 

  • Pljohns

    I love my steam mop-gets things super clean with no chemicals.  I throw the cloth cover in the washer and it's ready to go again.  

  • K8sMom2002

    Oh, yes — I bought the steam mop to save $$, and never realized until I started using it how it would also save my lungs! When it broke some months ago, I thought I'd go nuts until I got it fixed. 

  • Pljohns

    There are very few appliances that I have that I have said would be replaced the second they die-that mop is one of them!~

  • K8sMom2002

    My mom had a Shark, and my sister inherited it — it's still going strong. 

    Mine is a . It's a different one than they have now — I bought mine back in 2007 or 2008. Like Lynn, I really love the fact that I can toss the dirty microfiber covers in the wash. 

    The only trouble I have with it is that last year the cord frayed right at the base of the unit, and my sister and I had to take it apart and cut the cord a bit shorter and re-wire it in. But after nearly 10 years of excellent service, I can't quibble.

    Looking at the new model, it looks even more awesome — a scrubby pad for grout lines … I do take a brush and go over my old grubby grout lines in my bathroom, but the steam tends to knock the dirt loose. 

  • Payton's Mom

    Steam mops are the best!!! We got one ages ago. We use it frequently. We also bought a tyson cinematic big ball animal cleaner. It claims it's certified by the asthma and allergy foundation of america. I love it. We have tried to be proactive about how we keep the house for Payton's sake.

    I'm not sure if Clorox wipes are okay though. I use them religiously. Man I hope they are okay. 

    I use a lot of magic erasers too without any extra stuff for heavier cleaning (sinks and such). They seem to get stuff clean enough on their own and then we don't have harsh smelling chemicals I  the house. 

  • Shea

    I use the clorox greenworks wipes in the bathroom and it does not bother me (I prefer wipes to using sprays). After I clean the tub/shower, I let it dry and sit for a while and then I rinse it with water, that way any residues don't irritate me or my son because we have sensitive skin/ eczema, and I wash my hand well after using them, and use gloves sometimes depending on what I am cleaning. And I keep the door open in the bathroom so it can air out. I steer clean of things that are scented or frangranced as those smells tend to linger (whereas bleach, vinegar, and other chemicals fade. I do use one air freshener that does not bother me at all, it is called citrus magic, and it uses natural citrus essences and is very nice. I haven't tried the magic erasers in a long time, I used to use them and they do work very well will minimal scrubbing, I might try them again and do a little self-test, at least for those difficult areas… but I bet since it is not a spray that if I wear my cleaning mask when using it it will not bother me. As far as your daughter being exposed, I would just have her not be in the room you are cleaning, or nearby the cleaner, until the smell clears, especially in small spaces like the bathroom. Ad then tend to steer clear of frangrances in detergents, soaps, and even things like scented candles, lotions, and perfumes, and then add one in at a time and be observant to see if it bothers her (at a time when she is not on high medications or experiencing a flare).  

  • Payton's Mom

    She has skin issues as well so her clothes are always washed separate with the tide no dyes/scents/etc detergent and dryer sheets.

    We got rid of all candles and we use wax melts because we were told smoke might bother her. Then smells, so now we don't really do those either (and never have we used anything in her room – the whole 2nd floor of the house – or the basement where she likes to play a lot).

    She is an avid cleaner. She is obsessed with wanting to clean windows. She is a bit neurotic, I have to admit. She constantly wants to Windex everything, but I am always telling her no for obvious reasons. Every few months I give in though and let her go crazy one day and Windex the house down. What do you use in place of Windex that doesn't bother you? She never complains of the glass cleaner bothering her, but I still would rather she didn't have any part of it . . . She just begs alllll the time. 

  • K8sMom2002

    Payton's Mom, I can't use Windex, so I use either straight rubbing alcohol or damp newspapers and dry newspapers — they're the best because they don't smell at ALL. 

    Dampen a wadded up newspaper sheet and scrub the window, then dry it with a wadded up dry newspaper. 

    As for Dyson — several Dyson's products are certified by

    I'm quoting here:

    The asthma & allergy friendly™ Certification Program, administered by the Asthma and Allergy Foundation of America (AAFA) in partnership with the international research organization, Allergy Standards Limited (ASL), is an independent program created to scientifically test and identify consumer products that are more suitable for people with asthma and allergies. You can find certified products and services such as carpet cleaning, flooring, vacuums and more at

    So yes, these product go through scientific tests to see if they will be more suitable for people with asthma and allergies. 

  • Pljohns

    I have a dyson and they are worth every penny-actually it's my second. Our house flooded 5 years ago and it was ruined so when the insurance said they'd pay, they paid for another one!  I think the think I like the best is that I can wash the filter myself and don't have to keep buying expensive replacement ones.

  • K8sMom2002

    PLJohns, how do you empty the canister without dosing yourself with dust? I've wondered about that — that's what made me hesitate about bagless vacuums. 

  • Pljohns

    I've learned to get a plastic garbage bag that is empty and put the bin to be emptied in it and hold it tight around the top.  I end up holding it there for a few seconds until the dust clears but so far, it's worked!

  • K8sMom2002

    Oh, wow! THANK YOU! I'm going to try this with my Roomba — the only drawback I have to it has been emptying the dustbin. And now I know how to tweak a bagless vacuum … You rock!

  • Jen

    pljohns  - good tip on emptying the canister. I need to try that next time.

    @Payton's Mom - Did you have her try the trick of using newspapers instead?

  • Payton's Mom

    Never tried newspaper no. That sounds worth a shot. Our asthma specialist is going to give us a bunch of green cleaning recipes to try as well.

  • Shea

    I heard the newspaper thing too. I really should clean my windows… I am horrible about that task.

    My ex had a business tinting windows in homes and cars, and he had to make sure the windows were completely dustless and clean beforehand. He swore on johnsons baby shampoo mixed with water as the best window cleaner. And I'd imagine, as long as you get scent free, that itd be ok to use, as its made for newborn babies. 

  • K8sMom2002

    Oooh, Payton's Mom, do you mind starting a new thread with some of those green cleaning recipes when you get them??

    Shea, I've never heard of the baby shampoo combo, but wow! That's one shampoo scent that has never (so far, knock on wood) triggered my asthma. I'm going to try it! Is it a one-to-one ratio or what?

    And not to worry about being horrible at cleaning windows, Shea … I am, too. I'm a little better now that I have windows that fold in for cleaning, but before, I really dreaded having to go outside and clean them — it meant taking the screens down, etc., etc. and being outside for so long.

  • Shea

    1 Tbsp Johnsons baby shampoo per 1 quart water for window cleaner. 

  • K8sMom2002

    @Payton's Mom, has the asthma specialist given you any tips? Did the newspaper work?

    And Shea, I'm going to invest in a bottle of Johnson's Baby Shampoo to try out that! I'm excited about washing windows now.

  • Pljohns

    Hey Payton's Mom-we haven't heard from you in a while-how are things going with the home visits?  I hope they have helped and hope you all are having a good summer!

  • K8sMom2002
    Payton's Mom posted:

    Never tried newspaper no. That sounds worth a shot. Our asthma specialist is going to give us a bunch of green cleaning recipes to try as well.

    Did the newspapers work out? And did your asthma specialist suggest any great green cleaning recipes?