I worry about how puberty might affect my daughter’s seizures
My 10-year-old with Dravet is quickly approaching her preteen years
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The preteen years are stressful for many parents. Bodies are changing, hormones are raging, and emotions run high, resulting in that preteen angst we all love. Between the elementary and teen years, kids are trying to figure out who they are and who they will become.
As a parent, I have survived two kids going through this phase and coming out on the other side. It is exciting to watch them become the young adults they are today. Though there were absolutely some hard moments, for the most part I can look back and laugh at the situations that made me feel crazy.
However, when I think about my youngest daughter, Avery, navigating preteenhood, puberty, and all it entails, my anxiety goes through the roof. Avery, 10, has Dravet syndrome and an intellectual disability.
Puberty can pose additional challenges for a child with Dravet
As I consider how the upcoming years will affect her, I have a couple specific concerns. The first is the physical reality of her brain enduring puberty. I have talked to enough caregivers to understand that these changes can cause chaos for an already dysregulated brain. For a child with Dravet syndrome, this not only means behavioral issues and out-of-control angst, but also seizures.
I have heard many Dravet parents share that puberty caused their child to lose good seizure control. The thought of returning to a season of incredibly frequent and long seizures that medications couldn’t stop absolutely terrifies me.
With Dravet, a loss of seizure control can happen for numerous reasons, but the potential danger of puberty makes me very anxious.
Beyond seizures, there are many other considerations for young ladies going through puberty. At Avery’s last checkup, her pediatrician asked if I had considered putting her on something to prevent her from having a menstrual cycle. I was nowhere near ready to have that conversation. Giving my 10-year-old medication to keep her from having a period seems extreme, yet I worry about how she’ll deal with that reality.
Will she be able to clean and care for herself appropriately? Will she know how to use the necessary feminine products? Will she understand why these changes are happening to her? And who will help her navigate this incredibly uncomfortable but natural experience while she’s at school?
I have tried to initiate conversations to inform and educate her as best I can. While it could be years before her cycle begins, I also know it could start at any time.
On the one hand, I am incredibly grateful to bear witness to her living out these years. Every day is a gift. Anyone who loves someone with a rare and life-threatening diagnosis will understand that.
On the other hand, as we get tiny glimpses of Avery’s preteen attitude and desire for independence, my heart breaks a little, knowing this season will look different for her than for her typical peers. Having these conversations and planning for these realities isn’t something you can fully prepare for as a parent.
As with everything in life, we are waiting to see what will happen. I’m trying to lay down my anxiety, knowing it does no good for me to work myself into a panic attack over something that hasn’t even happened yet. Maybe it will all turn out OK.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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