I think every parent gets frustrated by how much of an enigma their own child can be. Why is he in a bad mood? Why are her grades falling? Am I doing what's best for them?
When you have a special needs child that struggles with communication, that mysteriousness is just magnified. Nicky rarely complains. He almost never expresses discomfort. And yet for years he was dealing with digestive problems that had to be painful and uncomfortable. As a mom, it just tears me up inside to think his little body was hurting and he couldn't tell me. I feel like it's my responsibility to know and make it better.
So... sometimes that can turn me into "crazy mom." I analyze his every move, watch every bite of food he takes, count every minute he sleeps...
About 4 to 6 weeks ago, I was noticing that Nicky seemed to be "off" again. He wasn't sleeping very well, he was spacing out and he just looked sick to me. His complexion was pale and his eyes were glassy and dark-rimmed. His focus just wasn't there either. It was taking him two or three times as long to do his homework. I was worried something was really wrong. I was worried he was regressing again because of another digestive issue or other ailment.
I voiced my concerns to his doctor, who thought it was probably a Herxheimer reaction brought on by the Diflucan. The medicine kills off the excess yeast in the digestive tract and as the yeast dies off, it releases toxins into the body. This can wreak all kinds of havoc, like headaches, spaciness, stomach upset, etc. But to make sure the Diflucan wasn't causing some other negative reaction (affecting his kidneys, etc.), Dr. Gabriel ordered a blood test.
The next day, Nicky came home with the beginnings of a rash on his face. I recognized it right away as impetigo, because he'd had it twice before. Impetigo can present when the strep virus is in a child's nose and results in a rash in that area. I thought right away that this must've been what was wrong with him. He's had strep this whole time! Well, I took him to see Dr. Gabriel (who heard a lot from us that week) and he found that Nicky didn't have strep throat. So the virus was very localized and not very significant.
While we were waiting on the blood test results, Nicky's Diflucan prescription ran out. He'd been on the medication for 21 days. Soon after we stopped he really seemed to bounce back. He was much more "with it." And his coloring improved.
The test results all came back normal, so Dr. Gabriel really felt that it had all been a Herxheimer reaction after all. And since Nicky had responded so strongly, that probably meant he still had a lot of yeast in him and needed to go back on Diflucan. I had mixed feelings. Obviously, I was happy to have normal test results, but I wasn't looking forward to seeing him react that way again.
But I trust Dr. Gabriel and everyone at PATH (including the wonderful nurse, Elisa, who fields a lot of e-mails and texts from me and is so caring and responsive -- not to mention brilliant), so Nicky's back on the Diflucan. They've added a supplement to help with the Herxheimer reaction. We're on day 12 and it seems to be going a little better this time, but time will tell. Eventually the Herxheimer reaction should subside and we will see improvements in his behavior and focus.
I'm trying to ease back into "sane mom" mode again. As hard as I try to diagnose him and figure him out, I really need to leave that to the professionals. Fortunately, the team at PATH takes family concerns and observations very seriously and they listen. That's what I'd been looking for in a doctor for the last five years and I'm just so gratified to have found that. So I'm going to be patient and let these things take their course, but it's hard. As moms -- special needs or no -- we feel compelled to be doctors, detectives, psychics, and a million other things all rolled into one. So hey...we're entitled to go a little crazy now and then, right?
