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

So much for that theory

Remember yesterday, when I was all "I'll just keep him close to home this weekend"?  Right.  So not 5 minutes after that post, the daycare calls to let me know that my son has a fever, and has had two "loose bowel movements".  I picked him up and the poor little thing was burning up!  After giving him something for his fever, we sat down for dinner.  All of a sudden he starts pulling his socks off and rubbing his feet.  I looked down and there were two huge, red, rash-type lumps where his feet should have been.

We rushed off to the ER where his fever spiked and his rash spread to cover his entire body.  When the doctor saw us she told us the fever was because he was developing an ear infection, but brushed the rash and diarrhea off as "that's what happens at daycare".  If one more doctor says that, I might lose it.  This is why I love my family doctor.  If she had the same attitude, my son would still be suffering every day under the pretense that he was still adjusting to the germs at daycare.  From now on I'm telling any doctor besides my own that I keep him isolated from the rest of the world for fear of contamination.  What quick diagnosis will I get then?

Ultimately, the rash and diarrhea go hand in hand, and it means that his food was somehow cross contaminated at daycare.  Time to bring in another copy of the prep rules to go over with the cook.  Or maybe I'll just take my colleague's advice and bring in all of my own food for him.  Leave nothing to chance.  The more this keeps happening, the angrier I become.  Other allergies and food restrictions seem to be taken more seriously, and it doesn't seem fair.  I fully support the need for nut-free environments, because I understand the consequences of that type of allergy.  My husband has a severe food allergy himself.  But my son's illness deserves the same consideration, because the consequences of ingesting gluten are severe as well.  Besides the rash and threat of dehydration from the diarrhea, ingesting gluten means that he is unable to absorb other vitamins and nutrients, which affects his growth, his neural development, and his bone density, among other things.

We will keep him home and quiet (hopefully) for the rest of the weekend, and perhaps I'll spend some of that time preparing single serving portions to bring in to daycare next week.

Thank you for listening to me vent!