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    • #11562
      Sam Sh
      Participant

      My child turned 13 last year and has Von Willebrand’s disease. Her periods started around the time she turned 13. The first one went on for 10 days and stopped on itself without any medication. The second one came two months later and went on for 24 days! After 15 days of heavy bleeding we reached out to HTC and she referred us to start Amicar medication. After a day or two, her blood report showed Haemoglobin was down to 5 from all the bleeding. So we went to clinic for Humate P infusion and blood transfusion. With that the Haemoglobin went up to around 8 to 9, and bleeding reduced for a day or so, but it came back. By that time the Tranexamic acid (less expensive than Amicar) order also arrived. We stopped Amicar and started on Tranexamic acid (TXA). TXA also helped to reduce bleeding and ultimately bleeding stopped on day 21. We also gave iron supplements for few days. After 35 to 40+ days, the Hemaglobin numbers were back to normal above 12. We were also referred to a Gynec, who walked us through various birth control options using hormones to stop monthly periods and control the bleeding.
      We are hesitant to start hormones at this young age, and really hope to keep things in control using TXA. I would like to find out if others have used the option of using TXA for the long run, using it each time period goes beyond certain days. Has anyone experienced issues with use of TXA in long run? I find some literature relating TXA and other antifibrinolytics to possibly cause side effect of venous thromboembolism, so somewhat worried with this approach too. Would be good to hear from experience of others.

      • This topic was modified 6 months, 1 week ago by Sam Sh.
    • #11564
      Shellye Horowitz
      Keymaster

      Hi There,
      What great questions. I am not a medical professional, so I always first recommend to talk to your provider. I do know of women who take TXA every month… I do not know if that is the standard. The concerns you have re: clots is a great question to ask your provider.
      Birth control and children is a tough question. My daughter has a different bleeding issue. She used to flood and flood – her sheets were always soaked at night, etc. For her, hormone treatment (started at 15) was a game changer. She went back to a happier self, got involved in school sports without fear and stopped having bleeding anxiety. Her iron levels went up and she stopped needing supplements. She chose a hormone that stopped her periods.
      Every child is different – for her it was a game changer….
      Shellye

    • #11565
      Sam Sh
      Participant

      Thank you for your detail response Shellye, really appreciate.

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