von willen brands ??? - Mothering Forums

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#1 of 2 Old 09-08-2005, 08:13 AM - Thread Starter
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My step daughter has a disorder called von willen brands I believe that's how it's spelled. Anyway her mom doesn't talk to my dh I looked on the internet and found out what it is. She's 11yrs old and been dealing with it for 6 yrs and we still don't can't get info from her mom. I was just wondering does any one else have this or children dealing with this.
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I should have been a bit more specific. DSD has had bleeding problems in the past. Bloody noses and bruises pretty bad. A couple of times she has told us that she had to be rushed to the children's hospital. Never got a phone call from her mom. And when asked why we found out through a court mediator exactly what her disorders is ( well at least the name of it). Anyway we hear bits and pieces of her disorder so it makes it real hard to say what class or level of vwb she actually has.
She hasn't had any real problems with it in the past 2 1/2 years. But out of the blue she tells us when she gets her period she has to go to a obgyn and get put on the pill. That really infuriated her dad and I but, still got no response from her mom. She can't take certain cold, pain, or aspirins meds. I don't know which her dad doesn't either. I also know when she comes over she does have to carry med incase she gets a bloody nose. I'm not sure the name of it she's never had to use it here. I do have to add one day she was also saying she over heard her mom say if she hit her head hard enough she could die. What a horrible thing for her to hear.
She's not in any sports because of it and also has restrictions in gym. Still I seem more worried about it then my husband. He says he has to take her back to court to find out. The time out of work is to hard financially. But I say do what ya gotta do..But at the same time she would still give the slightest info. I don't understand how a child can be taken so lightly. My husband at the same time feels she a good mom and she will take care of her. I just wished she would communicate better.
If anyone can let me know if they experience the same symptoms and know the level of vwb you have let me know I just want to know what we're dealing with. I read that this can severely effect her having children because of the chance of hemerag and what else can we do about her period. She started last week. I'm worried she might get the depo to prevent her from bleeding at all... Any info can help!!!!
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#2 of 2 Old 09-08-2005, 04:09 PM
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My dh and ds2 have von Willebrand Disease. It's usually a mild bleeding disorder, assuming she has the most common type, type 1. My dh has never had a single problem with it. Neither has ds really. My dh's 3 brothers and mom all have it. The only reason they all found out was b/c dh's one brother had bad bleeding when he got his tonsils out. He's the only one out of all 6 of them (well, my ds is pretty young yet, I guess.) who ever had any problems. Does she have type1? Does she have any bleeding problems?

I have read that girls will often have more problems b/c of the period factor. Sometimes they will have really heavy or prolonged periods, but there are medications they can take, like Amicar nasal spray to fix that. hopefully your dsd won't have any problems, like most people w/ the disorder. If she does have these problems when she starts getting her period, please take her to a hematologist, NOT an OB-GYN. Most regular doctors know NOTHING about bleeding disorders and automatically treat all heavy periods w/ bc pills and stuff like that. And it's ironic to think that vWD is estimated to affect up to 3% of al people, but they just don't know it b/c it is usually so mild. Anyway, my ds has never had any problems, but we see the hematologist regularly to make sure his factors are staying at an OK level. If they ever drop, I guess we'll have to start him on some meds. Hopefully that won't happen.
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