I'm new to this board and fairly new to our daughter's diagnosis with Type I Von Willebrands last fall 2013. My daughter responded very well to DDAVP during her 6-hr challenge, but we were told she likely wouldn't need it unless she had an injury severe enough to require treatment in the ER or routine surgery. Other than bruising and intermittent joint pain (which may not even be related to her VWD), we haven't really had any issues.
Recently, she had a horrible respiratory virus that caused croup and a high fever that landed us in the ER. The ER doc recommended alternating Tylenol and ibruprofen for a few days utnil the fever fully subsided. Not long after the croup she had a couple of minor blows to the head- enough to leave a nice goose egg and a scrape/ bruising. I didn't think much of it until she started complaining of intermittent headaches over the next 2-3 weeks. In retrospect, I'm wondering if the headaches were in any way related to the ibuprofen I had been giving her immediately before her minor blows to the head? And of course I didn't administer stimate with either head episode as they weren't ER worthy.
When do you take stimate or administer it to your child?
On an unrelated note, what's the best medicine to give to a VWD child with a high fever?
I plan to follow up with the hematologist in the near future, but thought I'd reach out to others living with VWD in the meantime. Thanks!!
Hi and welcome. First of all, never give your child ibuprofen or aspirin. Or anything containing them. Doctors can be idiots! Most DO NOT understand bleeding disorders. The only one that most even learn about is hemophilia. I still have to tell( or remind)them just about EVERY TIME at the ER, quick care, hospital and doctor’s office(especially new ones). Every time they say take ibuprofen for pain, swelling etc. Thank god our 5 main docs get it though.
Now, when to give Stimate? That’s a tough and complicated issue. It differs for each child AND each stituation. It does get easier as you learn to deal with VWD. My hubby, me and all 4 of our kids all have VWD type 1 and we have learned to take each incident as they come. ANY HEAD INJURY THAT BRUISES AND/OR SWELLS GETS STIMATE!!! Any twist(ankle, knee, wrist, etc)with rapid swelling and/or bruising(especially if it seems more than “normal”) gets Stimate as a precaution. Nosebleeds that last for more than 10 minutes w/o slowing down or is extremely heavy(down the shirt)gets Stimate. Any broken bones, broken teeth or ripped off toenails gets Stimate AND ALWAYS tell paramedic/doc/nurse that Stimate has been given. ALL surgeries should get Stimate and there is IV Stimate but take yours with you, just in case. Teeth cleaning and dental work should get Stimate as a precaution. For girls on their period, Stimate may be needed. 1 of my girls bleeds so bad(10-14 days & 2-3 boxes of tampons) that we put her on Depo-provera(birth control) and Stimate every day of her period that now she bleeds only 2-4 days and it’s light. Now my other girl, only needed her Stimate once and that was when she first started and hasn’t needed it since for her period. Go figure. My oldest girl( my bleeder of the bunch) took Stimate everyday that she had baseball practice and takes it on days she has PT with ROTC. My other girl has only needed Stimate twice in her lifetime.She busted her chin open and had to get stitches. My youngest only once when he busted his forehead open. My other son is extremely different because of all his brain surgeries. He’s had Humate-P, Stimate, Amicar(by mouth,nose,injection and IV).
Now that being said and I’ve scared the crap out of you, every person and situation is different. Sometimes I don’t give Stimate right away. If a nosebleed happens on the first few days of summer or it’s a high pollen count day or a dry,windy day, I wait. If they continue, then I give it. If she happens to have a series of little nosebleeds during the day, I usually give Stimate. 3 of my kids don’t need it for most sprains, twists, bruises,etc. My other one though needs it for most sprains, twists, bruises, etc. she can bump her hip on a desk and have a bruise that is black and the size of my hand in just a few minutes. It helps to get a notebook and record what happened, how you treated it, how she responded and how long it took to get better. As you get to know VWD and how it affects her, it helps to have a record of how she reacted. Plus it’s nice to have a ‘cheat sheet’ to look at when she hurts herself and you can’t remember what you did last time.
When she goes to school, she’s going to need Stimate at school and day care too! You can be charged with child neglect if school doesn’t know about her VWD and don’t have meds at school AND child abuse if she got hurt at school and they don’t have meds. Hopefully she’ll be like 3 of my kids and never need to take it. I usually use our home bottles to restock their sister’s school supply. That way I only have to restock 2-3 times a year and it definitely saves me money! We start the school year with 12 bottles of Stimate, 2 bottles of liquid Amicar and 10 bottles of Amicar pills between us. And most of the time I only have to refill the Amicar pills.
Tylenol is the best to give for fever, headaches and bodyaches.
Sorry, ran out of post room. It sounds like she probably gave herself a tiny concussion and it’s healing. My son had a concussion once and was getting better. Then he accidently whacked his head on a cupboard door and it was like he gave himself a concussion all over again. Not as bad but the headaches he said were like little pinpricks in his head. They’d flare up and be gone again in a few minutes.
I hope this helps a little. Sorry I was so long. Keep all your VWD info( her yearly check-ups, her treatment log, VWD info for school, etc)in the same place. It’s easier than trying to remember it all. I keep everything in 3-inch binders. One for each kid so I can just grab the right one when needed. And get her a MedicAlert bracelet, necklace or even dogtags that you can put on her shoelaces.
I’m glad you found us. If you ever have questions or just need to rant and rave a little about anything, we’re here for you. We’ve all been where you’re at and we get it.