The Parade Marches On

The parade of doctors, that is.

To review, Liam has a condition called eosinophilic esophagitis. It’s poorly understood but the current thinking is that it stems from an allergic reaction and causes inflammation and other damage to the esophagus. The allergy can be food borne or environmental. We had him tested for food allergies and his tests came back negative. The standard course of treatment for EE is 6 weeks of twice a day liquid steroids by mouth – either Pulmicort or FloVent (usually asthma meds but used off label for this condition). They are short acting corticosteroids so they’re not supposed to have bad side effects. But we have a family history of not tolerating steroids at all well.

The steroids made Liam fidgety – like he couldn’t sit inside his own skin – and unable to sleep. Those two things combined to give us a kid riding the edge of breakdown in the 3 short days he was on the meds. When we called the doc about it she said to take him off for a week and then get back to her. We did so; he returned to normal – thank goodness because this was all leaking out in the classroom setting as well. We called the doc back on Monday. And Tuesday. And Wednesday. Finally, I called again yesterday and left the smack down message and they called back.

Basically, the GI swears she’s never seen anyone react in this manner to the meds. I think that’s shoddy medicine. It’s BASIC MEDICAL KNOWLEDGE that steroids do weird shit to people. They have their uses but they also have side effects. Even the short actors do and it all depends on personal body chemistry in terms of what can be tolerated and what cannot. I don’t know how she made it through medical school and specialty training without knowing this. For her to claim that she’s stumped by his reaction makes me want to throttle her. But, because this condition is not well understood or known, there aren’t really alternative treatments. Her only suggestion was to make an appointment to see an allergist. “Go see the allergist and see if they have anything they can do.” I suspect they’ll start with a scratch test for environmental allergies.

I called the allergist to make an appointment and there is an 8 week wait.  TWO MONTHS.  We have to wait until March 19th.  We’ve been navigating these waters since November.  It took until January just to rule out Celiac and get an answer about what’s really going on.  Now, the GI finds herself stumped and we have to wait it out another two months before we get more information and can move forward with treatment (I hope we can move forward, that is).

I’m still stumped though. Yes, and allergist is going to understand the medications better because they prescribe them more but they way they prescribe it requires a nebulizer and that isn’t the way Liam was told to take them. Furthermore, even if the allergist can pinpoint an environmental allergy what the hell do we do then? Put him on Claritin? How does that help his esophagus? I’ve had environmental allergies all my life and I don’t see how treating those are going to help his digestive system (except to knock back whatever allergic reaction he’s having – which I understand but the reaction is severe enough to cause damage, hence the need for steroids). I also don’t see why we can’t just change his GERD medication from Prilosec to Zantac or Pepcid. Those two medication are anti-histamines. If we’re dealing with allergies + GERD, I see a two birds/one stone situation.  Finally, the big question still left unanswered is “If we never identify the allergy that is the underlying cause, will this keep happening to him?”

They claim we can’t ignore the condition but the meds they want to treat him with are worse than the disease. Rock, hard place, us in between.

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