It’s basically to relieve the pressure
Dad: The compression garments she wears now basically covers from the tips of her toes all the way up to her groin area. It’s kind of like a long, tight, sock that is worn to decrease and relieve fluid in the legs. We’ve been using one since she was nine months old. As she grows, we’re constantly changing the size of her garment, so she gets three or four fittings a year, and it does make her feel a lot better.
Mom: She can stand longer with the garment on.
Dad: It’s one of those things where if she doesn’t have it on, she’s walking around a lot, and basically gravity takes over and fluid rushes to the bottom of the leg and then she ends up having a little bit of soreness and pain.
Mom: Then we can’t get the sock on if it’s off too long and her legs get swollen.
Dad: Right, and then we elevate her leg for a little while so the swelling goes down and then we can fit the stocking back on. It does help her dramatically.
Parents of Erin, child, Klippel-Trenaunay syndrome
We call it the Magic Sock
She uses a compression stocking. I give her massages on her leg, I do that myself. I give her a massage every day, and she uses her compression stocking every day. The purpose is to compress the legs o that the blood doesn’t stay stagnant with the leg, and it’s able to push the blood up throughout the leg. The stocking also helps maintain the size of her leg so it won’t get bigger…It’s just part of her daily routine. She’s always worn it; I think since six months on, she’s worn it. We have a name for her sock, we call it the Magic Sock, and we kind of make it kid-friendly. We talk a lot about it, and I don’t ever want Gabriela to feel like she has to conceal anything or feel ashamed, or we can’t talk about it. We talk very openly about it with her sisters—she has two sisters—and we actually massage her leg, the three of us together. So we make it into something that’s very open within the family.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
This whole process has made us all better people
He started using a compression garment when he was a lot younger, when he was having the pain and we couldn’t really pinpoint why. We finally figured out it was because his legs were the different lengths and his hips were off. After his debulking surgeries, the doctors will wrap the treated areas to help with swelling. We keep it compressed after the surgeries just to keep pressure on it to help with the healing. He doesn’t wear compression on a regular basis, because he doesn’t really seem to have a lot of daily pain due to swelling, like what they’ve told us to expect probably in the future. As he gets older he’ll probably have more discomfort from swelling. He does occasionally complain of discomfort if we are riding in the car for a while, probably just from the way he’s sitting in the car with his leg hanging over the seat. He’ll complain that his foot hurts, but most of the time if you just tell him to take his shoe off that helps. So he does that a little, but he’s not at all a complainer, I mean he has always been the best patient, and has such a wonderful personality. So it’s really, I think that this whole process has made us all better people, we’ve learned a lot from Cooper.
Mother of Cooper, child, Klippel-Trenaunay syndrome
She wears compression garments all the time
She wears compression garments all the time. We started wrapping her with compression wraps I think when she was about a year and a half, and then I think she started the tights at about 3… Because she’s so young, I think she responded pretty well, and she’s really not used to being without them now. I think that’s a huge help to get that started early, because then it’s just part of their lives, it’s not something that makes them different, and hopefully it’s something that just is them. She also uses a pneumatic pump to help with the fluid that has gathered in her lower limbs during the day. She wears two boots that are pumped up/down throughout the night.. She notices the difference when she goes without tights, she notices pretty quickly that her legs don’t feel as comfortable.
Father of Natalie, child, Klippel-Trenaunay syndrome
They make her feel different sometimes
Compression garments are not the easiest to get on, especially when she was younger, but it’s getting a little easier. I’m sure most 7 year olds could probably dress themselves without a problem, but we’ve got to go in and help her with her tights in the morning; after that she can take care of it, and that’s definitely an issue. You know, part of her independence isn’t there. Also if you picture having to do that for sleepovers or anything like that, it gets in the way of that. It makes traveling harder or staying at a friend’s house harder or any of those thing, and if somebody does stay over here, they’ve got to also be exposed to her pumps. So those are all definite issues, you know. They make her feel different sometimes…. The benefits are she walks better, walks for longer, her legs don’t hurt as much; it’s a definite benefit in that way. It’s also supposed to keep her veins in better shape for the long term. Varicose veins are a very common complication early on, and hopefully this will put those off for a little bit longer, anyways. And they are more comfortable the more she wears them.
Father of Natalie, child, Klippel-Trenaunay syndrome