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Tuesday, January 10, 2017

The Attack of the Evil Asthma

When Bruiser was in kindergarten - actually on the second day of kindergarten! - he was admitted to the PICU with severe asthma exasperation.  He was in the hospital for 3 days.  And his mother, the kindergarten teacher (not his but in his school) couldn't be with him because what kindergarten teacher misses the first week of school???

But, moving on, that hospital stay was the start of a long road with our boy.  There was another PICU stay that school year (February, I believe) and several ER visits for treatments.  After many trials and errors, we settled on inhaled steroids for daily management of his asthma.  It worked, well, ok.  He needed it daily...unable to even take a break during the summer, when symptoms tend to be less.  (Remember's important later!).

We made it through first grade with no hospital stays, just an ER visit or two.  Then our insurance decided it was too pricy to cover the steroid Bruiser was using and we switched to a different one.  He slowly went down hill and we started spending a night at the hospital here and there.  Every cold or virus was scary...and we carried multiple inhalers with us everywhere.  The day he walked into the ER and collapsed on the lobby floor is deeply ingrained in my memories...he was so, so, so, so sick.  But thankfully multiple duel nebulizers and steroids worked and he bounced back fairly quickly with each episode.

By third grade we became so much at recognizing his symptoms and knowing when he needed to head to the ER.  The good news is we got him treated quicker.  The bad news is that we ended up making multiple trips within days of each other because we could stretch him a bit and then he'd regress and get worse.  Right after Halloween of that year, we made 3 separate trips to the ER until he was diagnosed with pneumonia (or "as-monia" as they called it) and he was finally treated with magnesium and admitted.  This led to switching his daily meds back to the expensive one that we now pay out of pocket to cover and adding in an allergy pill.  That year brought another hospitalization or two.

Then we reached this past summer and that's when it went way down hill.  In August he was admitted  for exasperation and treated with 2 different oral steroids for a long duration.  In September we caught it early at the pediatrician and again treated with a long high dose of steroids.  Repeat in November with an admission and then again December with another admission...both with high-dose, long courses of steroids.

At this point he was no longer clearing his lungs.  He just sounded junky all the time.  Our amazing pediatrician determined it was time to refer to Boston Children's Hospital, since it's close and we needed to take advantage of the expertise.  This is where thing went a bit crazy.

While there is normally a long wait for appointments at such a world-reknowned hospital, we immediately had an appointment within the week with an allergist.  And that allergist presented a detailed plan of attack - allergy blood testing, immunology testing, appointment with endocrinology to assess steroid effects, and appointment to assess the structure of his lungs and test for cystic fibrosis.  Scary stuff but little did we know it was about to get scarier!

When we went to set the appointments, we were told the wait for endocrinology was 8 months.  We got a call the next day saying they wanted in their Boston office the next day.  Way to stress 2 normally calm and relaxed parents out!  What did they know that we didn't and why did they want him seen so urgently?

After a very sleepless night we headed to Boston to see the endocrinologist.  After a very detailed history, it was determined they had no new answers but requested more testing.  He needed to have a blood test done at a very specific time the next day.  The big concern was that all the steroids (daily inhaled and high-dose treatment ones) may have tricked his brain to stop his body from making steroids on it's own.  This is a major issue when he's sick or injured and his body wouldn't have the stress steroids to help him heal.  So we made plans to have his blood drawn the following morning and didn't expect to hear results until later the next week.

Well, you know it's not good when the doctor calls with results the very same day :(.  So apparently Bruiser's body was making so few of the stress steroids, the lab techs couldn't even record the results. This meant a definite diagnosis of adrenal suppression and prolonged additional medication when he gets sick.  And if that sick includes vomiting?  Then the hospital for IV meds or we will need to learn how to administer injections.  Yup.

That was the week prior to Christmas and we've already had one episode where we've had to give the additional meds due to a fever virus.  And we all survived it :)

The good news?  His body can recover from this.  Generally it takes the body as long off steroids to recover as it's been on steroids.  The bad news?  Right now he's been on steroids for 4 1/2 years straight...and he's still on them.  So that means we have at least another 4 1/2 years of adrenal suppression and treatment.

By the time this posts, we will have had a follow-up appointment with the BCH allergist and will have gotten more results from his blood test - allergies and immunology.  I'll be sure to post more with what we learn and where we are headed.  We are aware of one option to get him off the daily inhaled steroids - but that involves a slow injection every 2 weeks (and any needle with Bruiser involves pinning him down and hearing him say "wait, wait, wait! I'm not ready yet!"'s entertaining, embarrassing, and exhausting all at once!). be continued...

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