Storm Surge Ahead

Silly me!...... I thought all of the stuff up to now - Emergency Rooms, diagnostics, juggling Dr's visits, waiting rooms, confusion, diagnoses that make you revisit emotions you never "invited" for reexamination, symptoms that make you ache - not only for your "baby" and the pain he is feeling, but from your own inability to "make it feel better" - when he is suffering the most, controlling the fear that keeps trying to sneak in..... - WAS the "storm"..... NOT!!!

It turns out the events, up to this point, were not "THE" storm, but merely a prelude to the "storm" that that was about to hit. Not knowing that I should be bracing myself for a "hurricane" type storm, I was not at all prepared when it "hit" and it knocked me to my knees! (and spun me around a few times, too)!

When we went back to the GI, for the biopsy results, I was told that I would need to have Zachary seen by an Allergist. This made sense, given the potential allergy factor of the EED (I say potential, because it is not always the case, if I am understanding the information correctly, that the EED is directly related to allergies;)

This "recommendation" however, brought me to a slight "fork in the road"; and resulted in the 2nd major decision of this journey - the first was the decision to even allow them to do the endoscopy.... Remember, at that point I really didn't believe anything was wrong, and I did not want Zachary to have to undergo an unnecessary invasive procedure; nor did I want him to have to be put under anaesthesia [yet again] unnecessarily. While, as I said, I did not "see" the next wave of storm that was approaching, I did anticipate this "navigational issue", and I had "plotted" my [initial] course.

At the beginning of the school year, I had had a Dr. recommended to me - a Neuropsychologist - who, I was told, looked at, and diagnosed, learning & behavioral difficulties from a Holistic rather than Medical approach. I was told that his first step was to assess for hidden/unknown allergens (this was before we knew about Zachary's allergies) and worked at eliminating the offending allergen(s) from the child's (patient's) diet &/or environment. He came highly recommended and I was told that he often had amazing results. This recommendation had come shortly before I got sick. While I was interested in looking into getting Zachary into this Dr., I had not made it a priority (I already had more on my plate than I could handle and many of those things were, by necessity, a priority). After I got sick, obviously, for many reasons, this dropped way down on my priority list.

Then came Zachary's (suspected) diagnosis. In the week between the endoscopy and the biopsy results I spent much time on-line researching what the Dr had told me he suspected (the EED), but could not confirm without the biopsy results.... Reading that allergies are often the trigger, if not the culprit, of the disorder, and knowing that Zachary had tested positive for allergies - remember, I was told (in October, we were now at the end of Jan./beginning of Feb.) 'not so severe that they were anything I really had to worry about.... - and remembering that "that Holistic guy" dealt w/ allergy issues that were often misdiagnosed as something else (more medical), I had decided I was going to make it a priority to have Zachary evaluated by this guy... 'Maybe there was "something" to those allergies I was told were "nothing" substantial to be concerned about (Boy, would that thought be the understatement of the century!!!!)

So, with the appointment made, and the diagnosis confirmed, I gathered everything I thought to be relevant - the pictures from the endoscopy, the results of the allergy blood panel, the referral from the Neurologist (not previously mentioned), testing/evaluations done by the school, his IEP (Individualized Education Plan), and a few other things - and we were off to see Dr. Hopper….. Not at all prepared for the hurdles that I would have to navigate or the flood of emotions that were about to knock me completely off course.

Unbeknownst to me, I was about to enter a fog so dense it would stop me in my tracks and leave me wondering, “Where do I go from here?”