In Layman’s Terms

Without having the full extent of the results back (some of his major results like his enzyme and mucopolysaccharide* levels needed to be sent out to a special lab, could take a couple weeks to get them back), the news seems to be mostly positive.  I completely admit that I don’t have the same pseudo-cheery outlook I had this time last year when we were coming back from his first round of testing.  I think that’s because of the visible decline we’ve had over the past 6 months, and the fact that the results so far confuse me and don’t bear out many reasons for such a decline.

Most of his levels like glucose and protein in both blood and cerebral spinal fluid are at or near the normal ranges.  Anything that he had outside of normal ranges were close enough that they didn’t really raise any alarm and could be attributed to any number of minor causes.  His MRI came back with no significant difference from last November, and actually showed more “white-matter” activity.  Now, this could be one of two things, either an increase in substrate in the area around the brain, or growth in Armand’s myelin sheath.  Dr. Whitley could not say with complete certainty either way, but his inclination is that it is myelin growth, that it may be growing at a closer to normal rate, just that he’s still way behind where he needs to be for a 3-year old.

*(Seriously, sometimes I feel like I need to add a glossary page to this blog, especially for people who are just now following Armand.  That’ll be something for me to work on this week.)

The final stage of our trip was interesting to say the least.   First, on Friday night, someone pulled the fire alarm, and we had to go outside until the fire department came.  Luckily, Ari  had taken a long nap in the evening, so he was up and giddy when we headed outside.  Also, luckily, he didn’t have his hearing aids in, because that sucker was loud.  Then, Jefe had some issues after getting to sleep, some moaning and whining and crying — we tried almost everything from giving him gas meds, Ibuprofen, some of his drink, his paci, and finally some applesauce, before we got him calmed down and he crashed out.  More on that in a second.

By now it’s about 2:30am, and there’s some sort of party going on upstairs.  For the next 2 1/2 hours, I was kept awake by loud stomping, crashing, thumping, and by the occasional fits of rage that built up inside me.  I headed to the front desk to make a complaint at 3am, 4am, and lastly 5am, at which time the people upstairs were asked to vacate.  A lovely argument ensued between the belligerently drunk ringleader, and the rather nice lady working the front desk who, to her credit, didn’t stand down from him.  I actually literally just fired off an email in her support to the GM of the hotel.  Several of the “customers” were filing out as Lindy and I got in the cab to the airport at around 5:30am.

Armand doing his impression of a zombie on the flight back from Chicago to Dayton

Jefe was so sound asleep that not even leaving the hotel, getting in the cab, checking in at the airport, going through security, waiting at the gate, getting on the plane, taking off, landing in Chicago, or getting off the plane caused him to even stir.  Dude was O-W-T out.

His episodes have decreased a little (he had zero on Friday, 2.5 on Saturday, and I was informed that he had 4 today — that’s better than the 8 he had last Sunday and the 7 he had on the Fourth of July).

Overall, we did get some answers, for better or worse.  We still have a direction on treatment.  We will continue to be aggressive in increasing his dosage of miglustat.  We’re going to be introducing a Vitamin B-Complex supplement for him, to act as a neuroprotective anti-oxidant, along with the NAC and DHA supplements that he takes.  Hopefully the Ibuprofen will do it’s job, and in about 6 weeks we’ll introduce the minocycline.  We’re actually now scheduled to head back for another round of testing on October 8th.  We’ll see you then.

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1 Response to In Layman’s Terms

  1. Pingback: Days 1 & 2 In Review | Armand's Hope

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