My son, 2 years old, was just diagnosed with VWD. The Dr said he won't b able to play conatct sports when he gets older. What do they mean by contact sports? We are a very sport oriented family, & are very bothered by this. Do any of you have children with VWD that play sports?
Tanya Pollock
First of all,what type of VWD does he have? All of my kids supposedly have type 1,but they all bleed differently. My oldest gets bleeds the worst. She doesn’t have enough and it doesn’t work right. She gets bleeds from just dance class and PE at school. She won’t ever play sports such as baseball,flag football,soccer,etc. But she can do archery,handball,ride her bike,trampoline,etc. My 2nd doesn’t have enough and it works ok. She just bleeds longer,gets a lot of minor bruises and scrapes ooze a lot;they don’t seem to scab over. She’s a classic tomboy and does everything. She’ll get to at least try sports to see how she does. My 3rd bleeds longer but his clotting system shuts down after repeated traumas. He had a shunt malfunction,a CSF infection,a 30 day stay in PICU and several trips to the ER.NONE of it was due to his VWD;it just made made things a little more intereesting in OR. He has a shunt and metal coils in his head and I’m terrified of letting him do much other than ride his bike and play wii. But if we can get his head under control, his VWD doesn’t really affect him that bad and could play baseball,basketball and even flag football. Just NO regular football,hockey,rugby,lacrosse,etc. My 4th is like my 2nd does everthing just gets minor bruises so far.
It all depends on what type of VWD that he has and how he bleeds. I wouldn’t let him play full-contact sports such as football,rugby,lacrosse,hockey ( especially ice). But with good meds when necessary and proper training even that might be possible.
Great question Tanya. I’m sure John Stamler will have some thoughts.
They never told us what type he has…did several blood tests due to his constant nose bleeds, & told us he has VWD. Sent us to Children’s who did more blood work to verify that he has VWD. Once he turned 2 yrs old, they gave him the DDAVP meds, & he hasn’t had a single nose bleed since…that’s been a month or so. Besdies the nose bleeds, he hasn’t had any bruises or cuts or scrapes to see how he bleeds…he’s a VERY low key child. I’m gonna call the DR. & ask what type he has, as soon as I’m able to talk again.(just had my tonsils taken out) Sorry to hear that ALL of your kids have VWD. That’s AWFUL!!! How old are they?
erin hurley said:
First of all,what type of VWD does he have? All of my kids supposedly have type 1,but they all bleed differently. My oldest gets bleeds the worst. She doesn't have enough and it doesn't work right. She gets bleeds from just dance class and PE at school. She won't ever play sports such as baseball,flag football,soccer,etc. But she can do archery,handball,ride her bike,trampoline,etc. My 2nd doesn't have enough and it works ok. She just bleeds longer,gets a lot of minor bruises and scrapes ooze a lot;they don't seem to scab over. She's a classic tomboy and does everything. She'll get to at least try sports to see how she does. My 3rd bleeds longer but his clotting system shuts down after repeated traumas. He had a shunt malfunction,a CSF infection,a 30 day stay in PICU and several trips to the ER.NONE of it was due to his VWD;it just made made things a little more intereesting in OR. He has a shunt and metal coils in his head and I'm terrified of letting him do much other than ride his bike and play wii. But if we can get his head under control, his VWD doesn't really affect him that bad and could play baseball,basketball and even flag football. Just NO regular football,hockey,rugby,lacrosse,etc. My 4th is like my 2nd does everthing just gets minor bruises so far.
It all depends on what type of VWD that he has and how he bleeds. I wouldn't let him play full-contact sports such as football,rugby,lacrosse,hockey ( especially ice). But with good meds when necessary and proper training even that might be possible.
They are 12, 10 1/2, 9 1/2, & 5. My husband& I also have VWD type 1. We never knew we had it til our oldest was in 1st grade. She had been to the nurse’s office 67 times in 80 days. She had had nosebleeds 58 times. The other times were for stomachaches. I had been giving her Motrin for pain which only been making the bleeding worse because they never told me about the bleeds unless she needed new clothes. They even told her to stop coming to the office because she was becoming a frequent flyer. She had a massive nosebleed and refused to go to the office. Her teacher asked why and then called me. I got her and blasted the office when I found out what they told her. They actually told me they thought she was faking it. How do you fake a nosebleed? I ended up getting the nurse fired and had her license taken away for not reporting a suspected case of child abuse because my daughter was always covered in bruises. Little to say that I’m always having problems with the schools now because I don’t take any of their crap and when they give some to me, I throw it right back at them. I am always having to threaten them with child abuse. It’s pretty sad when I have to call CPS on the school.
Tanya,
How are you? How is Carson doing? Were you able to speak to your doctor? If so, what type VWD does Carson have? Any other color?
Erin,
Wow....you and your family have been through a lot. Thanks for being so open. Your experience is so insightful and helpful. Thank you!
John
Yeah we’ve been thru a lot, but not as much as some people. Thankfully most have been ‘easy’ fixes but it seems worse when it’s one kid after another. I think they wait for their turn. Sometimes I wish they would have them all at one time then I say what am I thinking. Hospital staff don’t freak out anymore, thank God. One time, I had David up in PICU, Danny in ER for stitches, Kaylie on way to ER for bleeding, AND Lily on way to ER for throwing up. And they were all coming with different people. It was funny. I kept asking which room he was going to next and saying that I’ll meet him there. He was so confused. You should’ve seen his face when he realized that they were all mine. He then jokingly asked if I had any more kids that he needed to see. His jaw hit the floor when I said yes but not to worry he was already upstairs in the PICU. I have a feeling he had a few drinks after work that day. The nurses thought it was hilarious seeing me going from one room to other. They actually gave me a notebook to keep the kids straight. Thank God most of the nurses on duty that night knew my kids otherwise I’m sure CPS would’ve been called. I’m so glad that the crap rarely hits the fan all at once like that night. I think it’s only happened once. And people wonder why I tend to go a little nuts when they all get sick. With 4 kids sick you have to crack jokes or you’d crack permanently. Besides it keeps the kids from freaking out.
I love your sense of humor Erin. I think you’re right about keeping it loose. 
I try. Sometimes like that night you have to find the funny. The doctor was an easy target and the nurses got it before me.
Erin......OMG ..that's awful about the nurse...I don't blame u at all though!!!!! Your poor daughter. Your hospital story cracked me up!!!!!! I think it's bad having 1 kid with VWD...you have 4 kids, plus u & ur hubby with it...I can't even imagine!!!!! So are your kids able to play sports?
John...We're doing good..thanks. No I haven't been able to call his Dr yet, cuz due to just having my tonsils taken out, I am unable to talk yet. As soon as I can talk, um gonna call her though. I'll let u know. What did u mean by what color?
Scott...I know...I was laughing my ass off @ Erin's story!!!
Erin…nevermind about if ur kids r able to play sports…just realized I had already asked you that b4. Sorry…I forget who I ask what to. LOL
Don’t I do it too.LOL
Wanted to let yinz all know that have asked me, I just called Carson’s Dr & he has type 1 VWD.
Thanks for the heads up. Tanya - what are the ramifications and prognosis?
What do you mean Scott?
What type of vWD? I have type III severe and played water polo, soccer, swimming, volleyball, baseball, softball, basketball, tennis, surfing, skiing, cycling, running, flag and touch football (I played the QB or wide receiver, but blocking covered me in bruises…) I’ve done rock climbing, mountaineering, scuba and snorkling, waterskiing, ping-pong, badminton, skateboarding. Tried wrestling in high school, but again, I was covered in bruises and wasn’t really interested anyway. He can probably do most anything if he’s careful in terms of putting himself in a position to get whacked. Tackle football is probably definitely out, boxing, cage-fighting, rugby, contact karate and martial arts (unless it is the more traditional Okinawan Karate that is based on Kata, or Tai Chi, rather than fighting in competition). I also rode motorcycles and raced in motocross. So there are a lot of sports he can do, some riskier than others, but then as I tell my wife, everyone is at risk in most sports for injury. At 2 years he is going to be doing much cagefighting or being a fullback anyway. So enjoy life…
Yinz? You a Stiller's fan? Time to redd up the house, get some dippy for yunz hoagies and some pop n'at in your buggy.
:^)
Joel, he has type 1. Thanks for the advice…he is REALLY into wrestling…I know it sounds weird cuz he’s only 2 yrs old, but he started watching it with his older brothers & us, & eats & sleeps wrestling. So I was hoping to be able to get him into wrestling in a few yrs. Thanks so much!!! Yes we’re Steelers fans!!! LOL
This has been such a terrific discussion!
LOL on Joel loving wrestling! he’s a little boy with fire!
Steelers rule! I think most 2 year olds are already experts at cage fighting. If you could see my kids on a jungle gym, you’d wonder why they weren’t in the MMA already. My boys live for wrestling. They were so bummed that Edge retired, although they’re happy that they get to see Stone Cold on Tough Enough. They wrestle with their Dad,me,each other and even the dog. So far, so good but they’re really not the bleeders of the bunch. I cringe every once in a while but I really worry more about David’s head more than the bleeding. He’s has coils and a shunt.