More questions than answers
The doctors at home, they’re all right. They’re a little frustrating because they don’t always know what they’re doing when it comes to him, but that’s why I don’t usually deal much with them, honestly [laughs]. Back home, the doctors have more questions than answers, which makes you a little uneasy… I got used to it, they still don’t know much. Even his pediatrician—sometimes I feel like it’s pointless to go to most of the doctors down there. Usually we go there and they don’t tell me anything that I didn’t know before going there. That he had a cough, really? I knew that, I brought him here because I knew that. Half the time, they don’t tell me anything that I didn’t know ahead of time.
Mother of JT, toddler, CLOVES syndrome
When you have somebody that doesn’t really know what they’re doing
Other than [de-bulking], that’s really all that I know we can do is the laser and the sclerotherapy, which isn’t permanent but the more often we’re able to do it, we can prevent these major cysts from, or whatever that happens from happening. They can’t do it in our state, they won’t even consider doing it, which I wouldn’t want them to anyway if they didn’t have the expertise, but that’s a challenge. Up here, they’re such a team that works together, and they understand Caitlin’s body, but we were at home recently, and this was just ridiculous; she had this major pain in her leg, and they thought she had a major blood clot in her femoral vein, so they said she’s got a major blood clot… It wasn’t a blood clot, and they went in and did an IVC filter because they said that clot was going to travel to her lung or heart, but it turned out that there wasn’t a clot there, which I’m glad, but you know. When you have somebody that doesn’t really know what they’re doing, it’s just… They did that procedure because they thought it was necessary, but it wasn’t.
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
They don’t have experience in what she has
[KT] is not as well known. And then what irritates me more than anything is a doctor that thinks they know and they don’t. And they will act like they do, and they will try to treat her and they don’t know what they’re doing, but they won’t call someone else that knows. I don’t understand that. I’m always the one at home, when we go to the ER and she gets admitted, I’m the one calling up here getting a second opinion when they should be doing that. They think they know what they’re doing, and I’m sure they’re good doctors, but they don’t have the experience in what she has. And they know that! But they still go ahead and do things, like they put in that IVC filter to try to stop a major clot and there was no clot there. Put us through all of that thinking, okay, she’s going to have this major experience, they’re going to need to start administering TPA to the clot in her vein when she didn’t even have it. That’s the frustrating thing!
Mother of Caitlin, pre-teen, Klippel-Trenaunay syndrome
They didn’t know what lymphatic malformation was
He had a cough one night and it really scared me because of his condition and his issue with his airway. Had it been my daughter (who’s 2 ½), I don’t know that I would have shown up at the hospital, but I was just so nervous to hear him like that, and the strider and everything. I ended up taking him to the hospital, but I quickly regretted it because they didn’t know what was wrong with him. They didn’t know what lymphatic malformation was, even the doctor had never heard of it before. It should have taken an hour or something, and we were there for 7 hours for croup.
It was ridiculous, it’s like totally nothing, it just sounds really bad. It’s not a reason to go to the hospital but we did take him and just the reaction to the unknown. It was like they were really really cautious, really scared, didn’t want to let him go, didn’t know what to do, the nurses didn’t know what to do. I’m finding myself educating a lot more, and finally just having to say like, “You know what? We’ll follow up with our pediatrician in the morning, I think he’s ok, we’re going home.” Like, forcing ourselves out of there… Because it is so rare, it’s not like seeing a child with Down’s Syndrome, or seeing someone with a cleft lip even. People are more familiar with that. The rarity probably hits a lot of different aspects, but medically it was, we’ve just had that one experience where it was more difficult.
Mother of Matt, child, Lymphatic malformation
It’s been a challenge
Down south, we’ve had our share with experiences, especially when we had to take her to the ER. We’ve had doctors say it’s a bug bite, I’ve had one doctor admit her to the hospital saying that she has cellulitis. He wanted to give her medication that she shouldn’t even be on, so I had to release her on my own will and it was a fight with them and that kind of stuff. My pediatrician back home is helpful, he’s been understanding but other than that, it’s been a challenge… My problem at home is the doctors really don’t know what a malformation is, so nobody really wants to take care of her. They kind of just push it away. I’ve had a hard time at home. You kind of take it day by day with her. I can’t really plan anything in advance because I never know what the day brings.
Mother of Emma, child, Venous malformation
Having your child have something that nobody knew about
It was very hard because she was our first child. All of the ultrasounds and everything were fine; no one told us that anything could be wrong. Our pediatrician (who we’re not with anymore, we switched since he didn’t really know what he was doing), his words to me when he gave us the diagnosis was that she needed brain surgery or she was going to die, which isn’t really the best thing to tell a brand new parent with a 1 month old. It was all very scary for us and we were all just very uncertain of what path things were going to take and bouncing from all of the different doctors and no one could really give us any answers to anything. Every time we made an appointment and went to the doctors we thought we would get some answers and get some help but really no one knew what to tell us which was kind of scary, having your child have something that nobody knew about.
Mother of Grace, child, Sinus pericranii