blood disorders

[sweeetie]

my daughter,4, was getting frequent nosebleeds... normal right? no, somtimes 3 times a day. anyway i took her to the dr and they ran some blood work. months had passed and no word so i figured no news is good news. well actually they lost her chart and now they are telling me her test came back posative. i just found out that she may have a disease called Von Willerbrand Disease. i learned its genetic and sighns of carring it is: periods lasting longer than 6 days, nosebleeds, easy bruising, etc... i guess its a type of hemophelia. i am sooooo scared how serious is this disease and what kind of life can you live with this type of disease. somthing so normal turned into somthing so unusual to someone like me. i just want some insight, some hope. the scary part is if i carry this gene or whatever i may have it as well as my son,2, may have it. is this a common disease? what is the treatment like? i saw somthing about drugs for this disease could cause anaphalaxis... oh my gosh somone just tell me what we are facing if you know at all....please because im very terrified for my little girl well really both my childrens health. thankyou...

[JoAnnaRF]

Hi Sweetie,
My 11 year old was just tested for the very same thing. Luckily she DID NOT have it, but waiting on the results was tough and gave me time to do a bit of research. And I thought for sure she was going to test positive becasue I also have a 16 year old, who without meds would have a perios 365 days of the year. So I thought that we were looking at a BIG problem. Like I said it was negative and the mystery remains as to why they both bleed and bruise so easily. But while I was with the Hematologist he said that IF she had it the treatment would depend on what Type she had. It is actually not too uncommon. In fact there are MANY people out there that go undiagnosed for most if not all of their lives.
I suggest that if you know what Type she has, that you google or yahoo search it. And I would be REALLY upset with the doc for losing the chart and keeping you in the dark for SO long. What a nightmare. We only had one pediatric hematologist within a hundred miles that our insurance would pay so we had to use the one. Luckily he was a good one. If you are in the same boat then I feel for you baecasue you should never have been allowed to leave that office with so many unanswered questions. You should be calling him 24/7 with any questions you may have and make him lay it all on the line. I am really surprised that he didn't explain her treatment options when he made the diagnosis. He should have also requested to have any other children tested right away.
Hate to go on about the doc but that just makes me so mad. As for the disease, I believe that in most cases when treated, the patient has to be careful just like with hemophelia since it is a bleeding disorder, but that they can live a normal life and go on to have children etc.. At least you now know what you are dealing with and can now treat the problem. Good luck to all of you and remember, keep on top of the doc til you have ALL the answers you need. And read read read. Information is power.
Your in my prayers--JoAnna

[kimmie_n_angus]

i have von willebrands and so does my son.....the symptoms lessen as you get older. jake would take desmopressin if he had a nose bleed...2 puffs up the nose. i have had multiple surgeries before knowing i had it and child birth....not a prob. this is inhertited so either you or your partner has the gene. i have never needed meds for this....and since being diagnosed we have found out my father has it....and was shot up in vietnam and lived w/o knowing he had it for 50 yrs....and his mother. so go get tested just so if you have to have surgery in the future you can inform your docs. won willebrands is the most common bleeding disorder and affects all ppl. it a platelette issue in the mucus membranes. common symptoms are nose bleeds, bleeding gums, heavier menses, easy bruising, and rectal bleeding when constipated.

love....kimmie

[kimmie_n_angus]

it doesn't hinder my life or my sons at all....the nose bleeds will improve after 5-6 yrs old. in the winter we use little noses saline gel to coat his nose and it helps prevent the nose bleeds. your children will be fine and live normal lives....my menses are 4 days long and not heavy....they have a normal happy life. you and your partner should be tested....and whoever has it.....tell that side of the family. you can live with this your whole life and never know you have it. it is autosomal dominant...meaning only one parent carries the gene and they HAVE the disorder too, it affects both sexes, and you have a 50 % chance of passing it to all your children. only one of you have this...so get tested. everything will be good.

love....kimmie

[JoAnnaRF]

Great info Kimmie! You told her everything the doc told me but I just couldn't remember everything he'd said. I'm so glad you had so much insight to give her so now she can hopefully relax.