My daughter just started on Stimate

My 14 year old daughter started on Stimate on September 10, has not been a silver bullet so far. We are really glad to have it just to try it and see if it helps. We finally got it through an insurance override for this medication it is still expensive $190.00 for one bottle of nasal spray containing 30 doses. It took us three years and the insistence by her hematologist that this was vital for her for the insurance to wake up and take action.

At first she experienced facial flushing and a terrible headache but that has diminished with each use. A single dose or two of Stimate does stop the bleeding but only for a a few days at a time. I'm just not sure if this is considered a success or not. I am interested in finding out what others experience with Stimate has been. We are going to see her Hematologist in a couple of weeks because she has other health issues also..very frequent viral infections including Enterovirus 68 for which she was taken to the ER. This virus was prevalent in our area and was complicated by her asthma she has had tow additional viruses...the true "back to school plague". The poor kid has had an incredible 24 days of school missed since August 12th! We've got the 504 plan and a home tutor but she is still struggling to catch up.

So if anyone can share their experiences so I can try to determine if this will possibly work in the long term for us I would love to hear about it.

Thanks everyone for your continued support!

Stimate really did nothing for me.. They drew blood sample on me.. then ran an iv bag of stimate and drew blood sample afterwards.. and my VWF barely showed an increase. They told me in a serious situation I would need a transfusion.

I'm sorry to hear that KaylaJo. Do you by any chance suffer from severe bleeding and pain during your period? The doctors are currently considering Stimate a success for my daughter. Although they have never done any post Stimate blood tests. She is still having breakthrough bleeding but the Stimate has slowed her bleeding by about 75%. For us this is huge because her blood loss was rendering her unable to function. She has had to take numerous doses for this to occur. I guess this another wait and see for us. I'm just praying that this works in the long run. Thanks for your comment.

Thanks so much dklel9307. We are hanging in there.

No the ONLY thing that helped me was going on Birth Control.. after several attempts at some different types the only one that stopped the bleeding was Ovral which is a very high progesterone pill. I have been on that pill since I was 13 (because my very first period lasted non stop for 8 months - this is how we discovered I had VWD).. I am 27 now. NEVER had a problem since. I do not take the placebo pills. I stay on it for four months.. stop for a week to have a very light period and then back on for four months. No problems.. no side effects.

The hemotologist was no help to me.. it was a pediatric Gynecologist who helped me!

Hi there,

I was also prescribed with stimate as i was having surgery and this was necessary to stop any bleeding, and make it clot easier.. It seemed to help a lot!! However, i only use it in emergency of severe bleeding.. I was also at this time on tranexamic acid.. Hang in there!!