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Von Willebrand Disease (VWD) - Online Support Group

Declan’s Mom, my 5 yr old was diagnosed with VWD type 2

I have a few questions about sports. My son Declan was diagnosed with type 2, we are currently waiting to find out if it is A, B but he responded to DDAVP so they think he is A. But the doctor really scared me talking about cranel bleeds, especially with sports. What did everyone do about sports? My older son is committed to Yale University for lacrosse so obviously this was going to be a big part of Declan’s future (god willing…but I guessed he has not). Can anyone tell me if they have had any experience with bleeds in the brain? He had needed stitches and was not healing so they gave him a few IVs of the DDAVP, is healing a problem for a lot of type 2’s?
I really appreciate your input, there is not a ton of info online about these specific things actually happening.

Hey, @Declansmom! I dont have any experience with cranial bleeds, but I played sports all through high school. As you saw in my other post, I’m 2M, so it’s not exactly the same as 2A or B, and there are even variations in how VWD manifests itself within the same type and subtype, so every case is really specific to the person! I broke my wrist playing field hockey when I was in high school, and I didn’t receive any treatment for bleeding with that; it healed completely fine. It’s not the kind of thing that really needs to be treated from the perspective of a bleed, of course, and it’s not the same as head injuries at all, I’m aware, but I’ve never hit my head, so I can’t speak to that.
However, my dad played football in high school and received a LOT of concussions, like maybe 10, and never had any problems. But of course that’s not to say he couldn’t have, you know? And at that time (late 70s, early 80s), he didn’t even know he had VWD, so they weren’t treating him. He makes it seem like concussions and head injuries weren’t even a big deal back then. I know for a fact he never went to the hospital when he got KO’d – my grandmother would just keep him awake until he stopped throwing up (such a different time).
I obviously can’t say whether your son’s doctor is right or wrong to make you worry, but I will say that my experience with doctors tells me that those who don’t know a lot about VWD tend to be alarmist, and those who do – like you son’s hematologist – pursue treatment with an abundance of caution. Doctors who don’t know a lot about it hear “clotting disorder” and immediately think of the worst case scenario. I think that was one of the reasons I was warned off getting an epidural – the chances of a spinal bleed in that case are so miniscule, but the risk is still there. But it’s also a risk every time you leave the house that you’ll get hit by a bus, and you don’t stay in your house because of that, you know?
I was never deterred from playing sports because for me and my doctors, the concern wasn’t, “am I more likely to get hurt than a kid without VWD.” With really severe types, that’s the issue, definitely. But those people with more severe types often have to make other lifestyle changes anyway, so sports are sometimes not even in the realm of possibility for them, and they know that because they have to live their lives a little more carefully than the average person. Their VWD makes them more at risk for internal bleeding and other issues. 2A and/or B might fall in that category – I’m not super familiar with them. But I do think your son would know something was wrong by now if he’s been playing LAX long enough and well enough to go to Yale and play (congrats to him, by the way, that’s SO huge!!). What’s VWD like for other family members who have it? What’s it like for him?
Like I said, with a good hematologist, you’ll still discuss those worst case scenarios. I think their taking that seriously is actually the sign of a good doctor. It tells you they care about giving you the best care possible (and of course, legally they have to). But for example, after I had my baby and my hematologist had developed this really aggressive, in-depth treatment for the VWD and delivery, I went to him and said, for subsequent kids I don’t want to take this approach, I don’t think I need it. He agreed that I could “get away” with a less aggressive treatment, but he didn’t recommend it because it wasn’t, in his opinion, the absolute best way to handle the VWD. But I know my body very well, and he supports my decision because he knows I’m adequately informed about my VWD. I’m not saying, throw the doctor’s advice to the wind and do what you want, but it took me a long time and a lot of over-treatment to get to a point where I feel comfortable telling doctors – even the ones I like and trust – that I want to take a slightly different course than they recommend. I feel OK and safe doing that because I’ve been in hem/onc offices and doing research on VWD for more than a decade at this point. And I do still need to have that legal, ass-covering conversation with the doctor where they need to hear me say that I understand that I’m going against their recommendation for what my best treatment plan would be and acknowledge that this is a decision I’m making. That can make you second guess whether you’re making the right decision.
What I’m trying to say is that a doctor might say to your son, “the safest thing is for you to never play sports again,” but he decides he knows enough about his body and the risks and what to do in an emergency that he’s going to still play sports. Because people need to be happy and not worry about their blood all day every day! (if he doesn’t already have one though, definitely get him a RoadID or a medical bracelet with all his info on it and treatment instructions in case he gets knocked out while he’s playing and can’t tell an EMT or paramedic what to do)
As far as healing goes, the Humate P/human blood plasma makes ALL the difference for me. I’ve had a spinal fusion (major 10 hour surgery), two jaw surgeries and I’ve had a baby. I received Humate in all those cases and I healed so fast and so well that the doctors were shocked. My dad has had the same experience with his hip replacement and two hernia surgeries – the doctors couldn’t believe how well and fast he healed. And we’ve also both had tons of bumps, bruises, scrapes and cuts, mountain biking injuries, etc that we didn’t have treated with the Humate and they healed fine as well, just much slower. Neither of us have anything that “never healed right” or was “never the same” after an accident or anything. I hope that helps! I’m going to get a reputation around here as a novelist at this rate hahaha :grin:

Thank you!! My son Declan is 5, the one going to Yale is not the one with VWD :blush:. Thank you for sharing your experience with me, Declan goes to Cohens children hospital and sees the head hematologist all she does is hemophilia so I guess i will just have to take her advice on something’s. I really appreciate you taking the time out!!! Means a lot!!
Kim aka Declan’s mom :blush: