Hello everyone. I took my daughter to the gynecologist for heavy menstrual bleeding. Her Von Willebrands factor just came back 39 (should be over 50). Now looking back this is starting to all make sense. I have sooo many questions.
Can motrin change your VWD factor?
Anyone in Michigan that can recommend a pediatric hematologist? There don't seem to be very many choices. Either Children's Hosp. or U of M...Both are about an hour + away.
Thanks!
My daughter is 15. We found out she had VWD about four years ago. Her doctor is about 2 hours away from where we live. In my opinion it’s worth the drive. They will give you what you need should an emergency occur. We are actually from Ohio, but have lived in Texas about 2 years now.The doc in Ohio was at Akron children’s and was a couple hours away from our home as well.
I doubt motion will change the numbers, but when you see the hematology doc they will redo the labs.
Good luck and you are welcome to message me anytime. I know it’s a tough adjustment.
P.S. You are correct…the choices are very slim for a pediatric hematology doc. And you need a special one. Most hospitals are considered “band aid stations” because one they have no idea what VWD is and two they do not have the medication to treat it…as it is very costly. (Don’t fret…Most insurance covers the meds very well) It’s not a med they have to take daily…only when heavy bleeding occurs or in a an emergency. 
DO NOT LET HER TAKE MOTRIN! Your hematologist should have instructed her/you at the time of her vWD diagnosis that any medications (including over-the-counter ones) containing ibuprofen, aspirin, NSAIDS, heparin should be avoided as these can increase bleeding for those with vWD. This can put her at an increased risk for iron deficient anemia which is common for females with vWD besides making menstrual periods prolonged and seemingly unbearable at times. Read all of the ingredients in all medications she takes and ask the pharmacist if you are unsure. I'm assuming she is taking Motrin for headaches and cramps associated with menstruation? The only thing I have found I can take is aspirin free acetaminophen (or hydrocodone when it is really bad). My bleeding has been controlled well with birth control pills except in a few incidences. Sorry I can't make a recommendation on a doctor. I wish your daughter well.
I really feel for you. I can't find a good paediatric haematologist here in Perth, Australia for my daughter either. There are only two in the whole city... slim choices until she turns 16 unfortunately! :(
Good luck and all the best!
X
I googled hemophilia treatment centers in Michigan as I wasn't sure where exactly you live. Here's some info and I hope it helps! https://www.hfmich.org/?module=Page&sID=michigan-treatment-centers
Here are our members from Michigan, Patty:
http://forum.livingwithvwd.org/profiles/members/?q=MI
The top group anyway. The rest have MI names like "Michelle."
Not sure where in MI you are but we are in Ohio and Akron Children's' is our closest and it about 30 minutes away. If you are close to the border it may be worth it to check over the border in Ohio to see if there is anyone closer.
I 2 girls with type I VWD and my older one has very heavy periods as well.
May I just ask how was your pregnancy journey with your daughter?
I live in Michigan! And yes Motrin can change your platelet numbers and make VWD worse! Tomorrow I am going to U of M Ann Arbor to see a new doctor!
All NSAIDS make a HUGE difference in a person with VWD. My daughter was prescribed them constantly for cramping viruses, fevers, etc. in spite of the fact that all of her Doctors were supposedly sharing notes - at my insistence - and all were aware of her VWD. The truth is some Doctors try to communicate with other Doctors and some do not. Our new Primary Care Internist is still waiting for a call back from our Hematologist...it has been three days now and the matter is urgent! We have to remember they are our employees and can be fired. Just make sure you hire a new one before you do fire any Doctor that you deem to be unresponsive or unreliable. I've seen it too many times to count. I can not encourage you enough to be your own advocate. All the best, Onemom
.
How old is your daughter. I found out about mine the same way. I never really hear about people my own age with it. I mean its kinda diffrent because i have no VW in me, but same thing. I'm 15. So it really took me for a shocker.