I am looking to start a support group for my daughter. She is 14 years old and has very heavy and prolonged bleeding with her periods. Being a teen and dealing with heavy periods is very tough on her. Nothing seems to help her either. Tried Stimate and that didn't work. Not sure how this works, message me please.
I have invited Kika to our private group here on the site, http://forum.livingwithvwd.org/group/vwd-and-women-s-issues
If anyone else would like an invite, please let me know.
My daughter takes Tranexamic Acid (generic for Lysteda) and it works beautifully. Not sure if it’s appropriate for her type. Also, birth control pills can be an option to control bleeding.
Hi Kika,
My daughter is also 14 and going through the same ordeal, unfortunately, so I know just how you are feeling. :(
She has been put onto the pill and also has to take Tranexamic Acid for the first three days of her period. This has made a difference for her as her period was VERY heavy and went for around 22 days. Then it would start up again around 5 days later! Now it goes between 9-14 days. It is still heavy, but is more predictable. She does still get some breakthough bleeding though. She also has very low iron levels that have made her feel fatigued and very flat.
Our biggest battle here has been trying to find a good paediatric haematologist here in Perth, Western Australia. Her current one is dreadful and has no bedside manner at all. Then we were referred to another one and after a long wait we were told she was too young to see him and needed to wait until she was 16! So frustrating! We are still looking for a better doctor...
I wish your daughter all the best and hope things improve for her soon. Let her know she is not alone and there are other girls going through this too. Take care.
Di
X
Hi Kika!
I am 26 years old with Type III Severe von Willebrand Disease so I know ALL too well about heavy periods. When I hit puberty (12 or 13 yrs old), I was hospitalized with my first period and very anemic. I was put on pill after pill, shots, etc and nothing seemed to do the trick. I'd have HUGE clots then when they'd release I'd nearly hemorrhage. I had a D & C done when I was 17 years old to clean the lining of my uterus due to so much build up. I was finally put on a birth control pill that seemed to work. It is called Ogestrel (generic for Ovral) and it has been a miracle drug for me. I will rarely have spotting that requires a mini pad, but other than that...I do not have periods, period! :) I never take the placebo pills, I continue another pack automatically. Hope this helps! Feel free to ask any questions :)
Hi my daughter is also 14 and she is about to try desmopressin for the first time soon. All avenues through her OBGYN have been exhausted. My daughter would like to share in a discussion with children her age. She is home a lot and really is missing out on life. We are hoping this works. What did they tell you the next step for you daughter was? Wishing you peace, onemom
If you would like me to set up a closed teen group for your daughters to join, I can start one for them, ladies. They will need to have their own memberships on the site. Please advise them not to use their real names when signing up, and not to share any identifying information on the main forums -- basic internet safety stuff.
That would be so great! My daughter needs some one to talk to. I am going to register her now. Please let me know what else I need to do. Thank you dancermom!
dancermom said:
If you would like me to set up a closed teen group for your daughters to join, I can start one for them, ladies. They will need to have their own memberships on the site. Please advise them not to use their real names when signing up, and not to share any identifying information on the main forums -- basic internet safety stuff.
Okay, the group is up. If your daughter sends me a friend request when she joins, I can invite her to the group.
It may happen tomorrow, as it is 11 p.m. here in Holland. Good night, all!
I have not told my daughter yet. I plan to when we go to U of M a week from today. I don't want her to freek out. I am sure she would love to join the group though when things calm down a little!
That's fine, they can talk when she's ready. My daughter is just relieved to talk to some one who can relate to her. She does not know of any girls who have gone through anything like it. I hope your daughter doesn't freak out but if she does my girl will understand. Take care, onemom
Patty said:
I have not told my daughter yet. I plan to when we go to U of M a week from today. I don't want her to freek out. I am sure she would love to join the group though when things calm down a little!
Thank you so much for your replies. Unfortunately, all avenues have been exhausted for her. She was very excited to hear of other girls her age going through the same issues. She doesn't know of anyone else with this condition. I think it will help the girls to have others to talk to.....
Our Children's hospital has a camp every summer for the hemo and oncology patients. Both my girls wen this past summer and really enjoyed it. It was talking to kids the same age as them that deal with the same issues.
Our hospital has the same type of support group camp. I signed my daughter up for it last year but she would not go because she did not know any of the other kids personally. In retrospect both she and I wish that she would have gone. I think that it's a very good start. All of our best wishes to you and yours!
tresmathews said:
Our Children's hospital has a camp every summer for the hemo and oncology patients. Both my girls wen this past summer and really enjoyed it. It was talking to kids the same age as them that deal with the same issues.
My daughter - mild type 1 - has had great success with Lo Loestrin FE. Started when she was 13, now nearly 16, periods much more manageable, and that's much less intimidating to her than regular, frequent use of Stimate.
Birth control will fix the problem!
A post was split to a new topic: Talo and birth control