Julia, Julia, Julia. Boy, have you been tearing at these momma heart strings lately. I’m here with a bit of a lengthy update on this crazy kid, and all the emotional turmoil she’s been putting us through lately. All it takes is a little unexpected, potentially bad, news to make you love ’em more than ever.
I’ll start over a month back, when I set up a long overdue appointment for Julia to see an allergist. For the last year (and honestly, probably longer than that), Julia has woken up in morning with hives. It took awhile to figure out that’s what they were. I’d thought everything. The worst of which was that she somehow contracted bedbugs (imagine my freak out at that possibility), but eventually just assumed it was some kind of mild allergy. I mean, they were pretty obviously hives, after all. They’d come and go, on her stomach, back, neck, etc., and each day she’d wake up with spots in a different place. She never had any itchiness, respiratory issues, or anything besides those spots, so I honestly just put off getting her an appointment for about a year. Day care tried to send her home a few times with a few unexplained rashes, but eventually they started ignoring it when it just kept happening. We finally made it to the allergist, and when he saw the spots, he confirmed they were hives, but that there was no need for an allergy test. Here’s where I was thrown for a loop.
He went on to explain about a rare disease called mastocytosis. Essentially, it’s an over production of the mast cells in the body, or a tumor of her mast cells. He went on to explain that her case looked pretty text book mastocytosis, and referred us to the dermatologist to make sure. This disease is linked with leukemia, so after it was confirmed, she would start having blood tests, organ scans, and follow up appointments to make sure it wasn’t presenting any more than these endless hives. Here I was thinking it was a little allergy, so I was pretty crushed that I waited over a YEAR to take her to the doctor. The mom guilt was STRONG.
So, that day, I took that girl wherever she wanted to go. We got hot chocolate and ice cream at the same time and I cuddled her up and did a whole lot of praying. I set up that appointment with the dermatologist and wished as much as I could that the 90% confidence that the allergist had of this mastocytosis was wrong. Like any mom, I googled way more than I should have, and my endlessly level-headed husband came home and calmed me down and laughed at how much I spoiled our girl that day. Goodness, she’s our crazy child, but I love her so darn much.
It took about a month for us to get into the dermatologist. We went in knowing there was a possibility for a biopsy, but I guess I didn’t really realize exactly what that would entail. The allergist looked at the spots on Julia for a long while, and called in two more doctors to look at them. They weren’t quite as sure about this mastocytosis, but still suspicious enough to recommend the biopsy. I was also told I could take her to a pediatric dermatologist, but that is a bit of a drive, and more importantly, another month of waiting for an appointment… more than likely to just get a biopsy. And then they explained the biopsy – an incision and essentially cutting off one of her hives, and then 4-5 stitches. All numbed with a local anesthetic and being held down on a table. Of course, the hubby was away for training and I was on my own. I couldn’t even call him to feel better about my decision, but I knew he’d agree with me to go ahead and have it done, so I signed the consent forms and dreaded what was to come for this crazy girl. You can probably guess this picture was taken before the procedure, when she was happy as could be showing off her 30 or so spots she had on her tummy that day to all of the doctors. So, in they came with the tools. It took about four of us to hold her down and they numbed her up. Or so we thought, but apparently red hair and anesthesia don’t mix well because it took 3x the normal dose to numb her. Then the cutting, blood, and four stitches. Those ten minutes felt like ten hours and all I wanted to do was hold her, but instead I had to hold her down and soothe her as best I could at the top of the table. Once she was finally done, she clung to me, and if she hadn’t, I’d have done the same to her because my heart was shattered into a million little pieces watching her go through that. I’m not even one to flinch when they get shots, but y’all, that was terrible.
I told her she could have anything she wanted afterwards, and her request was pink cookies, so straight to the commissary we went. It’s a good thing she didn’t ask for a pony because she just might have gotten it that day.
They told us it would be about a week before the results were back, or two if they were inconclusive and sent out to Besthesda. Of course, they were inconclusive and sent out to Besthesda. So an extra week of waiting, and they called us at exactly two weeks. The advantage to doing the biopsy was they could test for a whole host of other conditions. And we got the news we were hoping for – NO mastocytosis! And an official diagnosis of spontaneous urticaria. Translation – AMAZING NEWS.
So, now we’re headed back to the allergist to follow-up on this spontaneous urticaria. As it was explained to me, it’s essentially chronic hives without an explanation. Treated with a simple antihistamine – nothing crazy. I don’t know a whole lot about it, but I know that it wasn’t mastocytosis – praise God! However, about half of the cases are linked with an autoimmune disorder, so we’ll see what it means for this little gal. I’m hoping all it means is that we have a name for why she wakes up with spots everyday, and we keep some children’s Benadryl on hand for flareups, but we’ll see!
So, there’s the latest on our Jelly Bean. She gave us quite a bit of worry there for awhile. So we’re hugging her extra tight this Christmas, and all of these precious babies. So, all of this to say, love your kiddos and don’t wait a year and good golly, take them to the doctor if they wake up with hives everyday!