If you're a parent with young children, you're probably buried somewhere under a pile of school registration forms, early-release forms, health forms, snack forms and help-me-get-to-know-your-child-better forms (I filled that one out last night. Truth). 'Tis the season for organizing and setting new routines.
But when you have a child with XLH, those forms can take a tiny bit longer (how many times can you write X-linked hypophosphatemic rickets without your hand cramping up?). You probably have a few extra worries, and you're probably anxious at handing off an expensive bottle of Calcitriol to the school nurse. To help you, here are five things I've learned about school, my child and how to handle XLH.
1. Talk to the right people; provide the right resources
My XLH daughter started second grade this year. Each year, I've talked to her primary teacher about XLH before or on the first day. I also provide the URL for the XLH Network website, and all of her teachers have taken the time to research her condition. I make sure to include the gym teacher, so that person is aware of any physical limitations.
2. Organize meds. Know who's giving them. Check in often.
We've had various people administer our daughter's meds, including daycare providers, school nurses, sitters, grandparents, etc. My daughter takes a liquid form of Calcitriol, rather than a pill; the dose is small and the syringe is hard to read, so I go over the instructions very carefully. We now provide a "guide" syringe where we've marked the dosage with a piece of electrical tape, just to avoid confusion. (This helps with overnighters or play dates when you have someone new giving meds.) Also, check in occasionally with the office or school nurse to make sure they have enough of everything.
3. Supply extra comfort care.
Provide the school with a non-prescription pain med just in case it's needed. Also, talk to your teachers about what to do if your child is in pain. Maybe the first approach is heat or rest, and if that doesn't work, go for a pain reliever. Have a plan on how to deal with associated aches and pains. You can even consider sending in a heat wrap for the teacher to keep in the classroom.
4. Give age-appropriate answers
When our daughter first went to school, I was worried about how she would respond to inquisitive classmates. What I found out was she had her own answers to their questions. When asked why she takes medicine, she tells her friends, "To help my legs grow better." Consider crafting some simple, age-appropriate answers with your child. It's amazing how quickly kids dismiss things. They don't typically need an in-depth answer. They just need an answer.
5. Just breathe.
Enjoy the school year, moms and dads and caregivers. You are an amazing bunch. XLH is only a tiny part of our kids' stories. They have so many things to discover and they'll surely surprise us in so many ways this year. Just. Breathe.