You don’t want to see your kid in pain
Daily life is pretty normal, the only thing that’s not normal is that Gabriela has pain, she has chronic pain. I typically give her Ibuprofen before she goes to bed, because if she doesn’t use her leg throughout the night, if it’s elevated and she’s not using her leg, when she steps down from the bed she’ll experience discomfort. Her being three years old, she cries and she whines a lot because of the pain. She definitely tells me, “My leg hurts.” so I try to manage her pain. That is the biggest obstacle with Gabriela right now, not managing her pain because we’re able to manage it, but it’s just her pain in general, that’s the biggest challenge right now with her. You don’t want to see your kid in pain, and also I don’t want to give her an excessive amount of Ibuprofen. So there are concerns, definitely.
Mother of Gabriela, toddler, Klippel-Trenaunay syndrome
She’s been good with no pain
Dad: If she walks long distances, her leg will get a little sore; I think more her foot area gets sore. We went to New Hampshire this past fall, and we got a cart. Walking around a park all day did get to her a little bit, so we just grabbed one of those carts where she can kind of take a break here and there. Walking long periods of time, that’s when you see it the most that it bothers her.
Mom: Plus in the morning when she wakes up.
[Later]
Mom: She’s been good with no pain. And we give her Ibuprofen if she’s feeling a little sore, but no, knock on wood, in a long time she’s only had a little bit of pain.
Parents of Erin, child, Klippel-Trenaunay syndrome
Pain is one of those things that she’s used to
Pain is one of those things that she’s used to. She’ll tell you, especially at the end of the day, that it hurts and her legs are tired and so on. But other things, like she’s had severe ear infections and said nothing, and you ask her why, and she goes, “Well, it didn’t hurt as bad as my leg so I didn’t worry about it.” And it’s like, okay, well that means your legs are hurting that bad, but like I said I think that’s just her normal state. And I know she’s in pain, I know she hurts. After one of those ear infections, I was putting together the humidifier to help clean her ears out, and she asked me what I was doing and I told her and told her why, and she looks at me and says, “Dad, I don’t need that.” I said, “Well yeah you do, it will help your ears.” “No, can’t you get me a humidifier for my legs, they hurt all the time.” There are days where she moves slower, there’s no doubt. We haven’t had one in quite a while, but there’s days where she doesn’t want to go anywhere, she wants to sit on the couch because her legs hurt so bad she doesn’t want to stand. So it does affect her life, definitely, and even now we give her a dose of Acetaminophen or Ibuprofen before bed every night and we notice that she sleeps better. If you don’t give her that, she’s awake several times early in the night, if you give her that she sleeps through, so there’s got to be some pain there… I think we notice the more active we can keep her, the less she seems to suffer from it. For example if we travel in the car for a long day and she doesn’t get to move, often the next day she’s much, much more affected by it. So if we do travel we try and take breaks and we try and get moving and so on. The exercise I think is a double whammy for her, she needs it.
Father of Natalie, child, Klippel-Trenaunay syndrome
Just something she had to deal with
She won’t hardly take pain medication. We do have it if she needs it, but if she asks me for the pain medication then I know she’s in a lot of pain because she has a very high tolerance. We have pain medication, and then she’ll take baths or elevate her leg or do whatever we can. The kind of pain she has, like the toe pain, it’s pounding. It’s not like a pain that pain pills are going to take away, it just doesn’t seem to help. She’s gone through different periods where she’s had these lymphatic cysts that have caused so much pain she had to have morphine or narcotics, but overall, on a daily basis, she does have days where I can tell when she’s not feeling good. She’ll take an Acetaminophen first, if she wants something more than an Acetaminophen she’ll take it, but mostly it’s just something she has to deal with.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
Frustrating for him too
I think it’s frustrating for him too because I think me and my husband both feel that sometimes he might hesitate to tell us that he’s having pain because he knows that that’s the next step, having to go to the hospital and go through that surgery. Also knowing that he has limitations, I think that frustrates him a lot. He gets tired and he wants to participate and wants to do things, but he’s kind of held back in some instances…
Certainly it can affect him and he does let us know when he’s getting tired, and when he doesn’t want to participate in certain things because he’s afraid that he will become tired.
Mother of Liam, child, Glomuvenous malformation
You just never know
Mom: Some days he’s like any other normal kid, he doesn’t have any pain all day – although he does tells us that he hurts all the time, it’s just not enough to complain about. It’s just really, really variable from day to day, you just never know… From my point of view, the biggest challenge is hearing him complain of pain and not being able to do anything in the world about it, because I mean I can give him pain medicine but it really doesn’t even help that much.
Dad: Just helpless
Mom: There’s really nothing you can do and that’s the hardest part, is seeing him in pain. He wants to do things other kids can do and he can’t always do that. We have to be really careful about him playing with other kids. He hasn’t been able to go to school; he’s on the homebound program with the public schools because he can’t attend regular school… Because of the pain, it’s not really completely safe for him to play with other children in case one of the masses gets hit too hard, that kind of thing.
Family of Michael, child, Blue rubber bleb nevus syndrome
Up and down and up and down
He has good and bad days. For the most part he’s like any other normal kid, but he does have days where the belly pain seems to be worse than others and he doesn’t really feel like doing much. He’s in a wheelchair, he can’t walk because of the one on his knee, or his arm hurts, or his shoulder hurts and he can’t move his shoulder, his neck will hurt him. He’s recently been having some dizziness, we don’t know if that’s related to the venous malformation. With the Blue rubber though, it’s kind of up and down and up and down.
Mother of Michael, child, Blue rubber bleb nevus syndrome