Thursday, June 07, 2007

A Gentle I-Told-You-So

(But first, please send good wishes to a pregnant friend of mine, whose blood work -- which we hope was a fluke -- revealed a potential problem for which she has to have an ultrasound tomorrow.)

That said....

Patrick has always been lucky to be in good health. He was not born with any of the common complications related to Down syndrome; his heart was healthy, his bowel was not obstructed, etc. He did have a weak sucking reflex and was not able to be breast fed, but he required no surgery or any extraordinary intervention other than an IV (in his head!). His hearing was (and is) fine; he was only mildly delayed in gross motor activities.

He has poor eyesight, but so do I, so did our dad, so does our mom, so did all of my grandparents and at least one great-grandmother.

In other words, that's genetic, but it ain't that extra chromosome.

About three years ago, he started having odd 'attacks.' We'd be somewhere he really enjoys when he'd start feeling tired, lightheaded, etc. His forehead would break out in sweat but his arms would be ice cold. They started first in summer, so we put it down to dehydration, because his breath had a dehydration smell that I will never forget (see above, re: couldn't nurse). Food and/or drink would help, usually.

At the same time, he started sleeping a lot, and started to have trouble sleeping lying down due to snoring/congestion and what sounds an awful lot like sleep apnea. His skin got so dry that even with daily applications of cornhusker's lotion, his knuckles and wrists have a permanently dirty appearance due to the cracked/dry skin that attracts dust.

He also started getting constipated quite regularly. Granted, he was always the feast or famine type (if you'll pardon the TMI) but we went from mostly dinners and snacks to no food for a week and will-feed-300-guests-feasts.

If that makes sense. To put it less delicately, he went from difficult but fairly regular bowel movements interspersed with ocassional loose stools to exclusively either days with no BMs to hours of diarrhea.

And he put on, suddenly, quite a bit of weight. This was while still in school, still taking PE, and getting much more physical activity than he does now. The whole family is heavy, and while he always had a "spaghetti tummy" (as a child) and a "pizza stomach" as he got older, he was never terribly overweight.

I looked up some stuff on the Internet and ultimately (as an amateur) decided that he's probably hypoglycemic or had hypothyroidism, which is apparently very common among folks with Down syndrome.

My mom had just (finally) gotten insurance, so I suggested at least blood tests. Hypothyroidism is fairly easily treated, and covered all of the above symptoms.

But, for whatever reason, the blood tests didn't get done.

Since we made our plans to go to Disney World firm six months ago, I've been nagging for him to go to the doctor so that we can officially get him a Guest Assistance Card requesting that he not have to stand in line outside (due to the above mentioned dehydration issues).

He finally went last week. The doctor ordered blood tests. He took the blood tests yesterday. He goes back to the doctor next week.

But today the pharmacy called my mom and said that he has a prescription pending (it will be there tomorrow) for thyroid medication.

2 comments:

Mz. Cat said...

Guess Patrick and I can now talk about our sluggish thyroids. Good thing it was caught.

SpooWriter said...

Better that it had been caught three years ago when I first googled "Down syndrome hypothyroidism" after my mom heard about it at the National Down Syndrome Congress conference.