Going back to that last hospital stay I mentioned that we met Dr. R. He had plans to diagnose her while we were there and had plenty of ideas simplest being that she had aspirated food when she was an infant and it was stuck in her lungs causing the inflammation and always negative lab results. Then he asked if she had been checked for CF and yes, Alana in fact had already been tested 2x via sweat test and then finally genetically as was I. Neither of us are carriers for CF so that effectively removed that from the equation. Anyway-we talked for hours about her past history and we mentioned that we had recently* brought 2 birds. Parakeets named Tweet Tweet and Opal. Wow. That opened his eyes to what was wrong with Alana. She had what is called Hypersensitivity Pneumonitis and it was from the birds. It’s an interstitial lung disease and it’s mostly seen in an on the job based scene i.e. coal miners lung, bird fanciers lung, & most commonly mold in walls. It is a hard disease to diagnosis and even harder to prove in some cases. There are things that are almost always seen with it and then there is a fine tooth comb that needs to be run over every aspect of one’s life. You have to have environmental studies done to make sure that you are not taking an already super sick person back into an environment that will cause them almost immediate distress. There are three overlapping versions of HP (Hypersensitivity Pneumonitis) Chronic, Sub-Acute, & Acute. If Alana indeed has HP she would have the chronic, which is the worst, because of how long her symptoms have been going on at this point. Chronic is low level exposures over days or weeks with acute flairs in between. Finding out what the antigen is a fundamental step in stopping the progression of the disease. Here is a medical definition of HP:
Hypersensitivity pneumonitis (HP) is a group of rare inflammatory interstitial lung diseases that result from repeated inhalation of certain fungal, bacterial, animal protein, or reactive chemical particles, called antigens. The body's immune reaction to these particles causes inflammation of the very small airways in the lungs, called alveoli. If exposure to the antigen is continuous, parts of the lungs may become scarred or fibrous.
Can you see why we would be so scared at the mention that she may have this? Is it something in our house? Is it something in the air that’s seasonal? Is it everywhere? Before we leave the hospital we set up with an environmental company to have our house tested for mold. Mold would be the most common reason a home would make someone sick and she’s lived in this house her whole life. The day she’s set to return home the house is tested and she’s started on steroids. The steroids are to make her lung stronger and if indeed it is a mold issue in the house than they can help protect her while we await the test results. It is going to take 2-3 weeks to get the results from the environmental company so in the mean time we just try and keep her well and return to normal routines.
Finally after what seems like forever the results come back and they are negative. The whole house was tested down to the crawl space and there aren’t enough molds to even slightly raise an eyebrow. During this time as well I have started on another search to learn about HP. The more I read and the more Dr. McAurther and I talk about it the more it doesn’t seem like Alana. Granted there are things about it that do, the fevers, the weight loss, and a few others but the main hang-up for me are two things,
1. She was so young when the coughing and fevers started, under/around 3 months of age, for HP that’s taking a rare thing and making it even rarer.
2. She’s able to have short period’s in-between that she’s OK. We have done 2 antigen panels by now (antigen panels are where they actually take her blood and test IT for HP triggers. They subject it to known and in her case, some newly discovered antigens, and get (-) or (+) results that way) and she’s tested (-) for everything including mold.
The more I learn the more I doubt that she has this. It’s neither the first time nor the last that she fits something but it isn’t her (Hyper IgD, Muckle Wells syndrome, Familial Mediterranean Fever, etc.) so we’ve learned how to be hopeful but skeptical at the same time. Nothing is ever black and white with Alana much to our dismay. On goes the testing and seeing Dr. R a few times. We have a stressed relationship with him at this point because what we were hoping was going to turn into her knight in shining armor with a DX has turned into someone who doesn’t appear to be listening to us and going with what doesn’t seem to fit her. It’s so frustrating. It’s so disappointing. It’s so usual.
We see Dr. R for what would turn out to be our last office appointment with him and he just tells us that she’s more than likely got HP to something that we don’t know about yet. That there are so many things that she could be responding too and medicine doesn’t know everything. Clearly that answer doesn’t work for us. Larry and I are not going to accept that she’s just got something because it’s a convenient DX. We start our search again and hope that she will make it there healthy.
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