What a “welcome to puberty” my poor daughter has had.  She’s now 12 years old and this year she started having her period.  Until now, we thought we had her KLS under control - if you can call it that.  Through a treatment program that includes Provigil, Trileptal, and strict bed times, she was experiencing only 2 episodes a year always late December and January.  They usually lasted 7 days like clockwork for the last 5 years.

This year, though, she started her period.  They are very irregular and the last 2, only 2 weeks apart, had incredibly heavy flow.  So much so that she was hospitalized and put on IV estrogen to try to stop it.  But, as distressing as that was she now goes into a KLS episode within 10 days of the end of her period in all but one case.  And, to make matters worse, they are lasting 2 weeks. 

When she was released from the hospital, the doctors put her on birth control and, in hopes that it would help the KLS, she is to skip the placebo week and start the next pack so that her levels remain constant.  Their thinking being that the drop in estrogen levels that triggers the period to start may also be triggering the KLS.  Between KLS episodes and the excessive blood loss she has missed more than half of the school year.

Have any other girls experienced this?

Since I am 29 (so way past puberty…but also a VERY late bloomer…started beriod at age 16 and got my last 12 yr old molar in college…probably y I didn’t get KLS til leter in life as well…and people are convinced I look/am 16 years old) I have missed periods due to episodes.  I said in another post this may be due to dehydration/malnutrition since I live alone and no to little help during episodes.  Since Nikki is just starting puberty…it is natural for her hormones to be all over the place (maybe not to the extent that you explained), but have they tested her for anyother gyn issues?  Not to be too personal, but might not be KLS related or hormonal, but something else.  Been down that road myself as well (with late start to periods, cysts, irregualr cycle, and very light bleeding, and family history of gyn issues).  I never went on any birth control.
I have 2 cousin that had similar issues as Nikki (but they don’t have KLS).  I would maybe get it checked out with a gyn just to be safe…could never hurt.  I know a great doctor in Hartford, CT area (and I see him as well…he also does pediatrics and rare disorders).  He knows docs across USA cause not too sure how far you live from CT.
Anyways, hope Nikki is doing better and best of luck