Hello all, I am new here. My daughter and son were recently diagnosed. As if its not hard enough to get people to take you serious and understand what can not be seen, my husband does not take this serious. I was saying how there are some sports that the kids can not play b/c of the bleeding risk involved. He got mad at me and said, "It is not that serious and these kids don't have be live in a bubble." I am not saying they can't do anything, I actually encourage physical activity. My daughter has been dancing for a few years, my son is showing a liking to t-ball and LOVES to ride his bike. He does not understand they can not do things like football or things that put them at higher risk for bleeding. Little bumps for them could land them in the hospital.
Great post VonMom! I think this could help a lot of people.
Hello, so sorry that you have to deal with the worry of this bleeding disorder. I have VonWillebrands Type I and did not get diagnosed until I was fifty. Luckily, I never had a major injury before then. At least you are aware and can take precautions and be educated on the condition. Your kids should be able to lead normal lives. I was advised by my hematologist to avoid contact sports for obvious reasons. You can have internal bleeding. Also, highly advised was a medical alert bracelet, which I wear all the time. They make all kinds these days and your kids would probably like to pick them out, since they are very stylish. I put in just a couple websites so you could get an idea of what they look like and cost, but there are many more websites. That is, if you haven't done that already
. I understand your frustration. I still face obstacles and ignorance about the condition even with physicians and surgeons. They just don't' get it. I always carry my hematologist's name and number with me so that I can "clear" everything with him before I let any other doctor give me a medication that is questionable. This has saved me many times from disaster. I recently was admitted to ER for bleed in brain and had to fight them to give me the ddavp and meds that I need to prevent more bleeding. So, very important to have a good hematologist that you trust and make sure he gets involved when there is any problem. Don't rely on all other doctors to take the necessary precautions. In my experience, they tend to underestimate von willebrands or just don't understand it well enough.
I have spontaneous bleeding sometimes even when I am very careful about avoiding blood thinning medications or over the counter products and vitamins/herbs. You can't play around with this. You just have to be very informed and learn as much as you can about the condition. Other than that, you can just live a normal life. Sorry your husband doesn't understand, but maybe you can find a hospital or clinic in your area that has some inservice class that he can attend for better understanding of the condition. Usually a hospital that has a hemophelia center will address all bleeding disorders. Or call the National Hemophelia Foundation for direction and they could also give you more information about what your children should NOT be doing. Remember with things like this "forwarned is forearmed."
Please message me anytime. Don't worry, things will be fine, just hard when a new diagnosis is discovered and you have to learn about it.
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=0&contentid=1
http://medicsalertbracelets.com/kids-medical-alert-bracelets/
http://www.laurenshope.com/category/111/medical-id-alerts-for-kids-and-girls
Take care,
Allergic
Hi!
I am 71 years old and just got diagnosed after some severe bleeding in my mouth and nose. I didn't do sports when I was young and I didn't get into fist fights or car accidents so I was a little surprised when I couldn't control nosebleeds. I got a real shock when I went in for a dental cleaning and wound up in the emergency room for eight hours, waiting for a desmopresine IV.
Your husband should go sit with your child in the ER for eight hours and then imagine the bill that he will get in the mail a few days later. Everybody hates prior prevention when it doesn't agree with their lifestyle, but we all agree other people shouldn't text while driving. It's too bad that harsh reality forces restraints on our dreams. The health of children, however, is a moral mandate and foolishly endangering a child is a potential criminal offense.
Your husband just can't imagine nosebleeds that won't stop or bleeding gums that lead to swallowing or spitting out large amounts of blood, hour after hour. I have had that experience several times.
I just spent a couple of days in the hospital getting two units of blood because of internal gastric bleeding due to an arterio-venous malformation. Although VWB may have contributed to the problem, I can't imagine what would happen if I got into an auto accident and had damage to my internal mucosal membranes.
I do wear a bracelet with VWB on it. I carry a wallet card and I have a standing order for desmopressin if I show up in the local ER. I also carry a physicians order for desmopressin when I travel. I also have a bottle of aminocaproic acid capsules in the medicine cabinet, which I carry with me when I travel.
Make sure you tell your dentist about the VWB to avoid serious bleeding problems. Get your hemotalogist to give you a physicians order for treatment so you can avoid delays in whatever ER you find yourself in.
Good luck and lots of empathy
John the elder
Have your doctor and druggist warn you of possible blood thinning effects of prescription and OTC medicines. Aspirin, other NSAIDS, Cymbalta and many prescription drugs will aggravate bleeding. Girls reaching puberty are at particular risk to bleeding problems and you should be prepared for that eventuality.
Wikepedia, on the internet has lots of info.
Hello,
Thank you so much for posting this message, John! I have had so much trouble with ER's and doctors in hospitals regarding the need for ddavp and amicar(aminicaproic acid). It's frightening. I am going to follow your protocol and have my hematologist give me a standing order and add a wallet card too. Last weekend I was admitted through ER via ambulance and they found I had a cavernoma in my brain that had bled. Can you believe I had to fight with them to get the ddavp and amicar? They wanted to do a catheritization to my brain without it and then they tried to discharge me without getting my amicar. It was a shambles. I was on the phone with my hematologist laying in icu bed trying to get my own meds. They hadn't even contacted my hematolgist even after I pleaded with them.
One month before I went in for a gynocological surgery and the anesthesiologist infused me with Toradol (anti-inflamatory). I tried to tell him. On the way home my index finger filled up with blood. Who knows where else I bled.
I'm still learning of more meds and products that effect clotting. Every time I have something new to take, I google it and see if it affects the clotting process. You have to. I've been looking for a website or support group for awhile. Glad I found this one.
http://www.mayoclinic.com/health/von-willebrand-disease/DS00903/DSE...
I hope VonMom reads this and her husband reads these messages too.
Take care,
Allergic
Johntheelder said:
Hi!
I am 71 years old and just got diagnosed after some severe bleeding in my mouth and nose. I didn't do sports when I was young and I didn't get into fist fights or car accidents so I was a little surprised when I couldn't control nosebleeds. I got a real shock when I went in for a dental cleaning and wound up in the emergency room for eight hours, waiting for a desmopresine IV.
Your husband should go sit with your child in the ER for eight hours and then imagine the bill that he will get in the mail a few days later. Everybody hates prior prevention when it doesn't agree with their lifestyle, but we all agree other people shouldn't text while driving. It's too bad that harsh reality forces restraints on our dreams. The health of children, however, is a moral mandate and foolishly endangering a child is a potential criminal offense.
Your husband just can't imagine nosebleeds that won't stop or bleeding gums that lead to swallowing or spitting out large amounts of blood, hour after hour. I have had that experience several times.
I just spent a couple of days in the hospital getting two units of blood because of internal gastric bleeding due to an arterio-venous malformation. Although VWB may have contributed to the problem, I can't imagine what would happen if I got into an auto accident and had damage to my internal mucosal membranes.
I do wear a bracelet with VWB on it. I carry a wallet card and I have a standing order for desmopressin if I show up in the local ER. I also carry a physicians order for desmopressin when I travel. I also have a bottle of aminocaproic acid capsules in the medicine cabinet, which I carry with me when I travel.
Make sure you tell your dentist about the VWB to avoid serious bleeding problems. Get your hemotalogist to give you a physicians order for treatment so you can avoid delays in whatever ER you find yourself in.Good luck and lots of empathy
John the elder
Have your doctor and druggist warn you of possible blood thinning effects of prescription and OTC medicines. Aspirin, other NSAIDS, Cymbalta and many prescription drugs will aggravate bleeding. Girls reaching puberty are at particular risk to bleeding problems and you should be prepared for that eventuality.
Wikepedia, on the internet has lots of info.
That is a great idea to have a standing order. We have 2 bottles of the nose spray on hand and our hematologist number on hand. We are very lucky to have one of the top childrens hospitals near by. Should anything happen the kids are sent directly there and not to the hospital nearest to us. When my daughter had a seizure, the doctor at the Wolfson's Childrens Hospital was great and did everything just to be sure that when she fell and hit her head there was not any internal bleeding. She also checked with our hemo nurse to make sure there was nothing more she needed to do.
I know all too well about the nose bleeds, heavy period and the bruising. I had a hysterectomy at 27 because of the bleeding and I am so worried about my daughter. The good thing is we know and can put her on the pill to help control it. I will put her on depo if the pill doesn't work. My mom has already started putting her opinion where it is not welcome as far as putting her on the pill.
I love the kids hematologist. He is great and their nurse, the one we talk to most, has been doing this for a long time and is so helpful. She has been helping me with what to tell my doctor so that I can get the correct test to get my diagnosis. I had one test and it came back negative but she said based off my history I need to get tested again. Until I have 3 test that say no then she will put money on it that I am the one that passed it to the kids.
I could not help but rub my husbands face in the fact that this is real and just b/c it is something he can not fix it is still there. My son had a nose bleed a couple of nights ago after I put him to bed.
I am so glad I found you all. Thank you for being here.
allergic said:
Hello, so sorry that you have to deal with the worry of this bleeding disorder. I have VonWillebrands Type I and did not get diagnosed until I was fifty. Luckily, I never had a major injury before then. At least you are aware and can take precautions and be educated on the condition. Your kids should be able to lead normal lives. I was advised by my hematologist to avoid contact sports for obvious reasons. You can have internal bleeding. Also, highly advised was a medical alert bracelet, which I wear all the time. They make all kinds these days and your kids would probably like to pick them out, since they are very stylish. I put in just a couple websites so you could get an idea of what they look like and cost, but there are many more websites. That is, if you haven't done that already
. I understand your frustration. I still face obstacles and ignorance about the condition even with physicians and surgeons. They just don't' get it. I always carry my hematologist's name and number with me so that I can "clear" everything with him before I let any other doctor give me a medication that is questionable. This has saved me many times from disaster. I recently was admitted to ER for bleed in brain and had to fight them to give me the ddavp and meds that I need to prevent more bleeding. So, very important to have a good hematologist that you trust and make sure he gets involved when there is any problem. Don't rely on all other doctors to take the necessary precautions. In my experience, they tend to underestimate von willebrands or just don't understand it well enough.
I have spontaneous bleeding sometimes even when I am very careful about avoiding blood thinning medications or over the counter products and vitamins/herbs. You can't play around with this. You just have to be very informed and learn as much as you can about the condition. Other than that, you can just live a normal life. Sorry your husband doesn't understand, but maybe you can find a hospital or clinic in your area that has some inservice class that he can attend for better understanding of the condition. Usually a hospital that has a hemophelia center will address all bleeding disorders. Or call the National Hemophelia Foundation for direction and they could also give you more information about what your children should NOT be doing. Remember with things like this "forwarned is forearmed."
Please message me anytime. Don't worry, things will be fine, just hard when a new diagnosis is discovered and you have to learn about it.
http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=0&...
http://medicsalertbracelets.com/kids-medical-alert-bracelets/
http://www.laurenshope.com/category/111/medical-id-alerts-for-kids-...
Take care,
Allergic
I also was diagnosed later in life. I think it was because no one knew about VWB. I also have the same problems with doctors even with some Hematologists. The reason I'm currently on this site is to see if anyone has had trouble with a joint bleed and if so what proceedure have they followed. My right hand is warm and swollen and it was diagnosed as tendonitis by a Ortho guy but I think I have a joint or soft tissue bleed.
I would appreciate hearing from anyone with a similar problem and what was done for it.
Hi,
I sometimes have small joint bleeds, such as in the toes and fingers. It will be spontaneous and out of nowhere. I usually apply ice packs and keep a close eye on it. I report these to my hematologist and they always want to know if the bleed last longer than ten minutes. I had one huge hematoma on top of my foot once and also applied ice and elevated the foot. It stopped bleeding and I didn't have to go to the ER.
I have a long history of tendonitis in my hands and arms and have swelling at times along with pain. I have to be careful of overusing the areas that get sore. If I continue to have bleeds more frequently I usually see the hematologist so they can check my bloodwork and bleeding time, just to make sure. I know how you feel, it is always in the back of my mind when I get joint pain or swelling that it could be joint bleeding. They warned me about that from the start, no injections in joints, etc.
I have a pretty good hematology group that I've been seeing for years now. I was lucky with them right off the bat, but that's not always the case. Be sure to find one who will check you really good so you that you will have some peace of mind. I hope that helps.
Allergic
Last October I fell down concrete stairs and developed a plum sized hematoma on my right hand. It was absorbed in my system but then in March I developed this pain in the middle and ring fingers and swelling on the knuckles. I can't hardly use this hand. Did you ever have an Ortho doc want to operate on your tendonitis? They did give me 2 cortizone injections in those fingers but it didn't help. I wasn't aware VWB can't tolerate injections. I am just amazed at the ignorance of my primary doc and the last Hematologist they sent me to. His lab didn't even know what a timed test was. I do have an appnt. at the St.Louis University Hospital Hemophilia Center at the end of the month.
I am sorry to hear about your misfortune. My experience with Doctors is somewhat similar, but I go in information about VWB. If I get professional resistance I tell a nosebleed story. I have a positive attitude and the younger doctors are not as resistant to listening to patients.
I also have a severe egg albumen allergy and when I got a transfusion, I specifically asked them to be ready for an allergic reaction to someone elses blood who had eaten eggs before donating the blood. Egg allergy people are not allowed to give blood because of the allergy. The doc in charge wasn't aware of allergy problems like that so he listened.
I keep in mind some of the VWB and bleeding disorder terminology like "clotting factors", clotting time, and exsanguination. (that's a term that will get their attention!) If they are smart, they will treat you as a learning experience, not as a pain in the neck.
Assuming that doctors and nurses know little about VWB is a safe assumption. Only a few cases show up in community hospitals. Two of the phlebotamists at my local hospital knew about VWB because they had worked with dogs at an animal hospital. It turns out that Dobermans suffer from VWB.
Good luck in St. Louis.
John the elder
Yes it is a safe assumption that doctors and nurses will know little. If their ego doesn't get in the way, then they will learn something from us and possibly be useful in avoiding a disaster with some other VWB patient in future. I haven't had to get blood infusion yet. That's scary, I'm allergic to so many things.
I knew about the dogs having VWB. Sometimes I used to think I would be safer going to a vet than the hospital. lol
leevitello, regarding the tendonitis....most ortho's that I've come across didn't want to even touch me sur surgery. They were too worried about the bleeding disorder. Only one wanted to move my ulnar nerve, found out later he was a butcher who cut everyone who walked in his office. I was advised by my hematologist when I first got diagnosed to not get injection in joint, because if you bleed in a joint it is extremely painful and can cause permanent damage to the joint.
I needed shoulder surgery a few years back and was worried. I contacted the hospital that had a hemophelia clinic and they recommended an ortho doctor who was familiar with VWB. He was great. Had no problems at all.
Glad that you are going the hemophelia center. They should take good care of you and be able to send you to knowledgeable doctors. Good luck.
Allergic
My ankles but most often my right wrist hurts to the point of not wanting to walk or use my hand. I can not use my hand like normal people can. I still have not had my official diagnosis. I have seen a few doctors and all I am told it, tendinitis. I am so sick of hearing it is tendinitis take motrin. Well since vWD and an allergy to motrin say I can't take it, I have been having to deal with extreme pain for 2 years now. I just wish I could get some relief from the pain in my joints and have doctors believe that the pain is real.
Hi Von Mom,
Do you think your husband may be in denial? I have seen this on several Ben's Friends Discussion Forums. For some reason men have a harder time coping when their loved ones are ill & they feel helpless.