Henoch-Schonlein Purpura: It's Just As Cute As It Sounds

It started three weeks ago when Zuzu ran away from soccer practice and ended up with a bunch of chigger bites on her legs and bottom.

She had a bath right away when she got home that night, but the next night she had a baby sitter and David and I went to parents' night at the girls' school. So it was Friday before I really looked at her legs/bottom again, and I was shocked at how red and angry the bites looked. I treated them with Benadryl gel and some Neosporin over the weekend.

On Monday she had a doctor's appointment to get her four-year-old vaccinations, plus a flu shot. I pointed out the bug bites on her legs to the doctor and he didn't seem concerned. He said I could keep using Benadryl or Neosporin.

On Wednesday we got a call from her school around lunch time that she had a fever. I picked her up and she slept all day. I figured it could be related to the vaccinations or it could just be a back-to-school virus. David stayed home with her on Thursday. She didn't run a fever again, even without tylenol, and she didn't complain about her bites. She wasn't scratching or messing with them at all, which surprised me, because they didn't seem to be getting better.

On Friday, our friends Julie and Cate flew in from Minnesota for a weekend visit. The girls played together on Friday, and I showed Julie how bad Zuzu's bug bites looked. Some were getting better, but others almost looked like they had bruises around them. But I reminded myself that the doctor had just seen her on Monday and hadn't been concerned. Plus, I was taking extra care to keep them clean and medicate them, and I was sending her to school in leggings even though it was warm enough for bare legs, just because I wanted to protect them from being exposed to more dirt.

On Saturday, all the girls played hard at the Magic House in the morning. That afternoon, I put on Mr. Roger's Neighborhood so Julie and I could have some uninterrupted conversation. Zuzu fell asleep, which was unusual. She wasn't really herself for the rest of the day, either. She occasionally complained that her tummy hurt, and didn't have much of an appetite. We went to Forest Park that afternoon and all the girls ran around and played, but Zuzu complained that her legs hurt. I figured she was just tired because they'd been up  late on Friday.

On Sunday, we said good-bye to Julie and Cate and Zuzu seemed okay, just kind of droopy. But she complained about her ankle, and I realized that it looked bruised and swollen. I made David look at it, and we wondered out loud if kids could sprain their ankles? It seems like their ligaments are so stretchy that it's pretty rare for a preschooler to have a sprain, right? I put ice on it and propped her foot up on a pillow while reading to her in bed that night.

She seemed to be feeling better on Monday, but I was getting worried that the bug bites didn't seem to be healing properly. Some of them seemed to be getting worse, and instead of looking like bug bites, they were definitely morphing into some kind of rash.

By Wednesday, we were back at the doctor. He took one look at her, said that it was an allergic reaction plus a mild staph infection. He prescribed an antibiotic ointment to be put on three times a day.

We ran through the little tube in about two days because the bites/rash were all over her legs, the backs of her arms/elbows, and her bottom. On Friday, I called the pharmacy to get a refill, but my insurance didn't want to pay for a refill so soon, so I had to call the doctor's office, and then the pharmacist ended up having to call my insurance, and it was Saturday afternoon before we could pick up another tube of it. Over the weekend, I continued to smear it on her every morning and every night, plus once after school, and the rash was not improving. In fact, there were red lines where the elastic of her undies seemed to have irritated her skin (something that had never happened before). I was having her sleep in loose-fitting pajama pants and no undies, but it still hadn't improved.

On Sunday she got stung by a bee while outside eating a popsicle. She'd been stung last year, too, so I fussed over her while she cried and got her an ice pack and put some lavender oil on it and let her watch PJ Masks. I wasn't too concerned about her having an allergic reaction or anything because we'd already been through this once. But this time she got an angry red rash in almost a square shape a few inches across, all around the bee sting. Plus she took off her shoes that evening and told me her feet hurt and she had red spots on one toe and the arch of the other foot. I started wondering if she could have gotten something else, or if I had assumed they were chigger bites when maybe they were some other kind of terrible insect (watching Stranger Things around this time was probably not great for my imagination). I also started googling symptoms of all the things that really scare me: lymphoma, leukemia, MRSA, meningitis...

The only thing that kept me from losing my mind with fear/worry is that she never ran another fever, and she never complained about the rash--never said it hurt or itched or tickled. She was completely unfazed even though I wanted to cry when I looked at her legs and bottom. It was the weirdest thing.

Monday morning, I called and spoke with a nurse. She thought maybe it could be HFM if I was seeing red spots on her feet, even though I explained that they didn't look like HFM when my other daughter had it. These spots weren't like blisters or scabs--they were more like bruises. She told me to give her Zyrtec for the bee sting and keep using the Mupirocin ointment and to call back Wednesday if things didn't improve.

Monday night when she took of her pants before the bath, I gasped. In addition to the bee sting area still being red and angry, she had red lines around her legs where the elastic of her socks or bottom of her leggings had been. This was NOT normal. We were coming up on three weeks from her last soccer practice, and while some bites seemed to have healed and faded, others were looking worse, and I just knew something else was going on.

Tuesday we were back at the doctor. This time David came with us because I was kind of freaking out. The doctor assured me that she wasn't contagious, it wasn't a flesh-eating bacteria, MRSA, or leprosy. But he said it was "very unusual." He referred us to a pediatric dermatologist and he didn't let us leave his office until his receptionist had called and set up an appointment for us on Thursday afternoon.

After leaving the doctor, I sent a photo of Zuzu's legs to my friend Erin, telling her I was freaking out and that we'd been referred to a specialist at Children's.

"That looks like a rash my sister had when she was little," Erin replied. "Allergic purpura."

I started googling.

It turns out that Allergic Purpura is now called Henoch-Schonlein Purpura. It's named after the two German doctors who discovered it, but "purpura" means small blood vessels are leaking into the skin. I read WebMD, the Mayo Clinic, and the Johns Hopkins Vasculitis Center website and just KNEW that's exactly what we were dealing with. All the pieces fit. She had every single symptom, though I realized that I had probably neglected to report her tummy ache or complaints about her legs hurting to our doctor. When he asked if she was complaining, I'd been so focused on the rash that I had kind of blown off her mild appetite loss and occasional whining about her legs hurting--poor little punkin!

Thursday afternoon, I took Zuzu to Children's Hospital and the dermatologist, three residents, a med student, and a nurse all gathered in the room to see her "classic presentation" of Henoch-Schonlein Purpura. The dermatologist also told me (unprompted) that our pediatrician "knows what HSP is" and "is an excellent physician" but that the bands around her ankles had thrown him off (which is also what freaked me out) so he wanted a second opinion.

It was a little funny when the first resident came in because I'd prepped Zuzu by telling her that the doctor was a woman; however, the resident who talked with us first was a tall Indian guy with a five-o'clock shadow. Zuzu did a quick double-take and then said to me loudly, "Mommy, is that a boy?" so I had to explain her confusion.

She was an awesome patient, letting them examine her and sitting quietly during my conversation with the doctors. I was really proud of her and how well behaved she was all afternoon.

So here's the thing: HSP is the inflammation of blood vessels that leak into the skin, causing what looks like a rash with yucky raised bumps, but they are actually under the skin rather than on the surface. The rash doesn't itch or hurt, but it can cause pain in joints and the gut as vessels leak there and cause swelling and lack of appetite. In some cases, it can cause kidney damage. There is no known cause for HSP. It's sometimes associated with upper-respiratory infections, but it has also been associated with vaccinations (specifically measles and chicken pox, both of which she had) AND insects bites. There's no recommended treatment, either. It usually lasts 4-6 weeks, but she could experience flare ups (including rash, achy legs, and loss of appetite) that may come and go for up to 6 months.

There are no known genetic causes (so Coco isn't more or less likely to get this) and no significant health issues to be concerned about in the future, except for this potential kidney damage. The dermatologist told me it was "quite rare" and then quoted "something like 10% of cases" which felt like a HUGE number to me, since I now face with the world with the understanding that the odds of anything bad happening to me or my family that are 1/160 or greater are basically guaranteed to occur.

My skewed logic aside, the doctors didn't seem too concerned about it since her appetite has improved and she hasn't had any sign of blood in her urine or anything like that. Still, we headed down to the lab to have blood work and a urinalysis.

I'd been to this lab at Children's hospital once before, when Coco was a teeny baby, and I felt the same way when I was there with her--terrified and also grateful. You see these parents there with kids who are visibly ill and although I haven't walked in those shoes, I can imagine the fear and the hope and the desire to learn everything you can but also to maybe protect yourself from knowing too much and being able to control so little.

Zuzu was a champ about her blood draw and made a really good effort to pee in a "hat" to collect her urine sample, but we ended up having to do it at home. My parents dropped off the specimen at the lab the next day.

Her blood tests have come back with everything in the normal range, and we see the pediatrician once more next week, at which time I hope we'll get the results of her urinalysis. The "rash" is already looking better, although her ankle was a bit swollen again Thursday night after she had a tumbling class.

I feel mostly relieved to have a clear diagnosis and thankful that it's not anything more serious. Of course, I've already run through the worst-case in my head (dialysis and kidney transplant), but it's been pretty easy not to dwell on that stuff because she feels/acts so normal 98% of the time. I'm now hyper aware of her complaints of a "stummy-ache," and she's catching on to that because she told me the other night that she had a "stumm-ache" and the only thing that would fix it was to eat chips for dinner.

Anyway, this HSP thing is also funny because most people have never heard of it, but I've also met three people who have known someone who had it (it mostly occurs in kids, but supposedly is more common in boys than girls). So I thought I'd put it out there (if you've made it all the way through this looooong post)--anyone know someone who has had HSP? My friend Erin's sister made a full recovery and had no further issues with it her whole life, so I hope that Zuzu is heading in that same direction.