My daughter was diagnosed with ITP when she was three years old. We did three years of treatment and she was diagnosed acute when she was 7. It’s been 6 years since any type of reoccurnace.
She just started her period and I am looking for research on the relapse of the disorder in adolescence. For a first period it was very heavy and not what I would have expected. I might be over reacting but just want to have a wealth of information just to be prepared. Also, we have moved to a new city/state and her current pediatrician is not as well informed about the disorder. Would it be good to find a local specialist?
Any advice appreciated!!
Sorry no one has replied yet - could be because of the weekend or could be because no one knows. I don't have an answer for you as I was going to say speak with your daughter's hematologist or PCP but you have moved and don't seem to be quite trusting of her new doctor. Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
I don't think there is much information about the range of normal for menarche because it is something that just isn't studied all that often. I think your main question would be what is your daughter's current platelet count. If her counts are normal and she is still in remission, then you will know that whatever her bleeding is like, it's not affected by platelet concerns. Anyone can request a CBC for your daughter, so you don't necessarily need to find a specialist for that or need a doctor who knows anything about ITP. Just knowing the number will probably give you peace of mind, especially if she isn't having any symptoms or other bleeding.
I have talked to my daughter's pedi about this very subject. Not only is she under hemotology but encrinology is also following her. (She is short statured). Anyways, the plan is as soon as she starts her period we are going to put her on birth control as long as every doctor agrees. She has chronic ITP. I don't want to risk her bleeding anymore then she has too.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
Thank you received: 2352
How are her counts?
My daughter, who did not have ITP, had very heavy periods for no known reason when she was 14. Years later, we found out that she had Graves Disease so I don't know if that was the actual cause or not. Her thyroid wasn't tested at the time. Anyway, her doctor put her on a very low dose BCP. Within a few weeks, she was having mood swings and crying all the time. She became very depressed. We both decided that the BCP was not worth it and she stopped taking them.
BCP's also carry a risk of blood clots and some people with ITP are prone to clots even with low counts. I'm only telling you this because there are risks with the pill, and you may not want to treat her if it's not necessary. Not everyone has heavy bleeding. I only did when my counts were below 10k. When that happened, I used Depo Provera which stopped the bleeding within a day, but I only did it when the problem existed.
mmcnatt wrote: I have talked to my daughter's pedi about this very subject. Not only is she under hemotology but encrinology is also following her. (She is short statured). Anyways, the plan is as soon as she starts her period we are going to put her on birth control as long as every doctor agrees. She has chronic ITP. I don't want to risk her bleeding anymore then she has too.
You certainly want to make the best choices based on your situation, but keep in mind that birth control is not without its risks. When I first started menstruating, the idea of "throwing me on birth control" was tossed around by my hematologist and pediatrician. My ITP started before menarche and I had also already had my splenectomy at that point. Luckily, I never needed to go down that path and have managed to get through my whole life this far without hormonal birth control *fist pump*. When you have other medical conditions, there is nothing easy about throwing hormones into the mix. I have always had relatively heavy cycles, and my mother, without ITP, has as well. Sometimes you are just a relatively heavy bleeder. It's all a spectrum. If you are having significant complications from monthly bleeding like extremely low iron levels, then you may want to look at options for dealing with heavy menstruation. It may, however, be more the cloud ITP that has you fearing any amount of monthly bleeding, even within the range of normal, as pathological. I totally get it, it can be scary. My advice would be to try to avoid putting a young girl on hormonal birth control if at all possible. That is a rough period in life hormonally without throwing more into the mix. Follow her platelet counts and monitor her iron levels. If those things are good, then hopefully no need to treat the monthly cycle as a "just in case," because that can introduce new problems!
However it goes, good luck to you both. It might be worth consulting with a gynecologist at menarche if you have problems with heavy bleeding.
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