Monday, June 17, 2013

Health Update: This is turning out to be a tough year

The last time I updated on the blog about my son's health was sometime in March, when we were putting my son on an elimination diet in an attempt to bring down the swelling in his glands.  Click HERE to see that post.  He was scheduled to undergo an ultrasound to check on his glands.  A lot has happened since then.

The glands didn't shrink with the diet, although his rashes disappeared and we realized that he can't have any dairy.  We had been giving him small quantities, but the rash disappeared when we took it out, so it's gone permanently.  He used to be able to tolerate goat's milk, and we will try that again in the future, but for now it's all off limits.  The follow-up ultrasound showed that his glands were actually getting bigger, despite the change in diet, and that's a concern.  So, we embarked on another round of tests to see if we could figure out the problem.

Those two weeks were the worst of my life. 

A lung x-ray, an abdominal ultrasound and more blood work.  They checked for vitamin deficiencies, lung cancer, leukemia, and a host of other illnesses.  Waiting for the results of those tests was agony, but we were lucky to hear that all the results came back negative. 

Except that there's still the pesky problem of his enlarged glands that nobody seems to be able to explain away.  They're much larger than they should be. 

Then, 10 days ago, he was glutened.  Nobody's quite sure exactly what happened, but he ate something at daycare that he shouldn't have.  My son says he had a bite of his friend's pasta, so I'm going with that, but who knows?  The problem is that his glands are even bigger than they were before as a result of the gluten, and he's had diarrhea for the past ten days. 

I know this is a gross topic, but I also know that there are parents reading this with their own kids experiencing these symptoms, so I'm writing this to provide info to people like them.  When I say diarrhea, I mean almost pure liquid.  There's nothing solid there, and although he tries to hold it in almost all day (which is painful and makes him miserable), it sometimes gets so bad that he can't.  He's had several accidents, and yesterday we went through four outfits before he finally let us put him in a pull up.  He was furious, and embarrassed, and felt like a baby, and it broke my heart.  He's four years old and has been toilet trained for years.

Different people have different reactions to gluten, but for my son it's always been diarrhea.  Usually for about two weeks.  The doctor said there's nothing that can really be done except to keep him hydrated, feed him well and as much as he wants, and give him a probiotic.  His appetite gets out of control when healing from a gluten attack, and he eats adult sized portions.  He's already skinny, but he lost the 2 pounds it took him a year to gain in the span of a week, despite eating almost non-stop, all day, every day for the past ten days. 

He goes back at the end of the month for a follow up ultrasound, but I already know they're going to find enlarged glands.  I can feel them just by touching his neck and head.  He's home with me today, but I worry for when he starts school in September.  Two weeks is a long time to be sick in one go, and no kid in kindergarten wants to go to school in a pull-up.  His ongoing illness has prompted me to apply for a leave from work starting in September, when my maternity leave ends.  This latest bout illustrates why.  I can't just call in sick for two weeks at a time, nor can my husband.  It will be an interesting year of finding a way to bring in an income while staying home with my youngest and working out my older son's health issues, but until we know what's wrong, this is the way it has to  be.

I want this happy little boy back

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