Hi Worried Mom,
PTT is not always representative of vWD, however sometimes Dr. Look at the obvious tests first for bleeding and clotting disorders (PTT, PPT, TAG, etc.)
The vWD tests can take anywhere from 10 days to 5 weeks to get back in my experience.
My daughter and I both have vWD. IF she has vWD, please know that it doesn’t always mean symptoms are severe so try not to be scared. Typically it would be more dangerous If you don’t discover the possibility of a bleeding disorder and go into a major surgery. I’m glad they’re looking at this before her tonsillectomy. I had mine in my teens before I was diagnosed and bled for 21 days…which pretty much stunk.
A diagnosis of vWD is often very manageable. There are common medicines which have been around for a long, long time and are very effective, and there are medications which are newer and people have good responses with as well. Some major changes with vWD is just giving a little pause before doing anything major medical (dental work, surgeries, major invasive stuff) and taking a few extra precautions with injuries (broken bones, car accidents, head trauma, bumps and bruises have to be looked at, and treated differently). Menses can be a little different for young women with bleeding disorders. For us, it started earlier and lasts very long (normal, non-bleeding women typically have periods for 3-7 days) sometimes ours are as long as 3 weeks. If vWD is the diagnosis, your Dr. will test your daughter’s responses to various medications to see which works best for her in the instance of a bleed or injury.
If there is an HTC (Hemophilia Treatment Center) nearby, you may want to consider going there for clinic as it will likely provide the most comprehensive care.
Last: depending on severity of th vWD, your Dr may or may not put restrictions on your child’s sport. We personally dealt with a higher severity of vWD and chose sports with less contact, although this doesn’t avoid all injury. We chose soccer (as a forward not a goalie or defender because we felt that would be more contact). We chose softball (as a second baseman versus catcher or pitcher where more injury could possibly occur), we avoided sports like Hockey and Football because of the contact level. These are all things to discus with your Dr. If a diagnosis occurs.
The one thing I can give you to is this: it’s gonna be ok! The fact that you’re finding out BEFORE any major issues means that you have the ability to be an involved, proactive part of your daughter’s treatment plan. Please consider getting involved with your bleeding disorder chapter and they can provide you with support groups and guidance! The more involved, the more educated, the better off your child will be!
Last: if your child receives a diagnosis of vWD, both parents may need to be tested. vWD is an inherited bleeding disorder and one of the parents is the carrier…so if it were me, I would want to be informed incase anything major needs to be considered or treated as an adult.
Please take care, it’s gonna be alright.