Infections
Pain is definitely a part
With surgeries or with infections, [pain is] definitely a part. When he gets an infection, he’s basically laid in bed for a day. It’s scary—definitely, he scares us a lot… but he always pulls through, so that’s a good thing. His leg seems to be okay normally, but definitely when he gets these infections, the first day is rough.
Mother of JT, toddler, CLOVES syndrome
Home is not familiar with it
He’s been in the hospital a lot. When he was 6 weeks old, he got his first infection in his leg. We had a specialist appointment a few months later, but we ended up by ambulance here because home is not familiar with CLOVES so they were scared, so they sent us here. We ended up being here for weeks, and then we went home probably after a month and then within a week we were right back. He gets recurrent cellulitis leg infections [It’s] not fun but we’re getting better at it.
Mother of JT, toddler, CLOVES syndrome
During a cellulitis infection
During a cellulitis infection, the skin will be red and hot and sometimes it’ll be like a knot. The last time he had it, it was just an area on his leg that got kind of reddish… It’s pretty easy to notice, because it starts getting all splotchy, I mean if it gets bad. We caught it earlier the second time because we were looking for it, but the skin just gets real splotchy, and he cries; just touching around it, he’d cry out in pain. We have had to take real strong antibiotics but if they don’t knock it out quickly, that’s when they’ll put us in the hospital for an IV. Of course he hates that, he’s the worst patient ever in the hospital, but it clears it up in a couple of days. I guess we’ve had to do that twice.
Mother of Cooper, child, Klippel-Trenaunay syndrome