As I mentioned in my last post, Caden was on steroids for a virus that caused his asthma to flair. Then Ryley got really sick and we spent several days doing tests and trying to track down answers which we really never got. The week ended with us in the hospital all day on Saturday for Ryley’s infusion, her having the “normal” ivig side effects and me getting taken hostage by a nun---to make a long story short, she was most definitely one of the original nuns and didn’t take no for an answer. She had a death grip on my arm and with her looking all official, and tiny, and old no one even noticed the peril that I was in. I’m here to tell you that I’m traumatized and I’ll be looking over my shoulder when we go back to the hospital again.
I made the mistake of posting on facebook Sunday night that I was sure this week had to be better. Dang the universe gets me every time for making statements like that. Monday morning we woke up to a small rash on Caden. Honestly between eczema and allergies we see a lot of rashes so this one was actually “less” extreme than what we usually see (before anyone comments YES the last allergic reaction was my fault…who knew they put carrots in spaghetti sauce…see what happens when I cook?) In the rush to get out the door with everyone we gave him bendaryl but forgot the morning dose of the antibiotic that he takes year round because of the immune deficiency. We debated calling the doctor but decided that we would give it 24 hours to subside with the Benadryl. By midmorning the rash was worse and had spread to areas that we typically don’t see a rash when it’s his allergies so we decided that if the doctor had an afternoon appointment we’d take it. Turns out that was a wise decision because the mystery rash was in fact an allergic reaction to the antibiotic that he had been taking for almost two years and another dose would have been well let’s just say less than a good idea. He started taking steroids again and we expected quick improvement.
On Tuesday the rash actually got worse quickly and by the time the doctor saw him again the hives had spread to his mouth and throat. They increased his steroids to the maximum dose allowed for his weight, increased the two antihistamines and added a histamine 2 blocker (who knew stomach meds like Pepcid block acid problems by inhibiting histamine 2 AND that they can be an effective treatment for hives…add that one to the mental filing cabinet). The doctor reiterated how dangerous that missed dose of antibiotic would have been---kinda want to scream STOP pointing out how close my baby came to dying….trust me we get it and are reliving that thought 24/7 at the moment. We also learned that his hives were significant enough that we needed to worry about Stevens Johnson syndrome; wow my brain might explode with all of the nifty new medical information we’ve learned this week (and this isn’t including the two Mayo appointments my daughter had this week and the fact we now are planning on surgery #14 for her in the spring). Now we need to come up with a new antibiotic plan for the immune deficiency since we have now eliminated an entire category but I’m optimistic his team at Mayo will have some ideas.
We try to avoid medications that cross the blood-brain barrier because we see decreases in Caden’s language and social interaction ability while behavioral challenges and stimming seem to increase. I feel like we are always trying to balance how treating one of his major conditions will affect another major condition. It’s almost like there’s a primary immune deficiency versus autism battle always occurring in our house but we try to just make the decisions that need to be made in that moment. Obviously this week keeping Caden alive was our first priority---he is feeling much better and we can actually see more white on his skin than red for the first time. He’s also starting to play and we don’t have to remind him not to scratch so much. BUT the stims like twisting his shirt into a ball (while he’s wearing it) and the flapping are out of control. We are hearing a lot of “I don’t knows” and “I can’t stand it” which are Caden’s way of letting us know that a meltdown is imminent and he wants help. Unfortunately most of our help really hasn’t helped this week but he has tolerated Elf and Elf as always has been right by his side at every doctor’s appointment, bedtime, and meltdown. In case I haven’t said it enough Autism Service Dogs ROCK!
Thanks to the meds, Caden was up at 2:30 am today wanting it to be “wake-up time” so I’m really tired mentally and physically. I’d like to leave this blog with a happy ending or some sage advice but honestly life’s just NOT okay. It will be okay as we move further from this incident and start to wean off the extra meds but at this very moment it’s just plain NOT okay.