Tips for sending your XLHer back to school

Today, our guest blogger is Jennifer West, the mother of a spontaneous XLHer, who lives and works in the Wisconsin Northwoods.

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.

The Social Media Flashlight: How Facebook Demystified XLH

We have another guest post today, this time from Jennifer West. She's the mother of an XLHer, who lives and works in the Wisconsin Northwoods. She's also an antique-collector and nature-lover. 

2009 was one crazy year. Our youngest child was born, and our daughter, Ada, was diagnosed with a spontaneous case of XLH. I was a hormonal mess, crying at the drop of a hat. I don’t think I ate very much, and sleep eluded me often. I lost weight, dropping down to my high school dress size, and I started getting sick. A lot. Tired and sick and confused. That’s my memory of 2009.

When that diagnosis came, after the X-rays and the blood draws and the appointments with first an orthopedic surgeon and then an endocrinologist, we were stunned. Rickets? And XL what? No brochures from the doctor. No resources. We were sent home with a stack of photocopies from a medical journal. We felt like we were walking through a tunnel without a flashlight.

I am a research junkie. Give me a topic, and I’m all over the Internet. So I pored over Google, traipsed through online medical journals, and read and read and read. And then I turned to Facebook.

I tentatively typed “rickets” into the social site’s search engine. And then “XLH.” A few results showed up, and I sent friend requests to anyone I could find who had referenced the condition. And then the notes came. Notes of encouragement. Notes of connection. There were others out there. I saw a glimmer of light. There was a path. I wasn’t the first to walk here.

C.S. Lewis, in his book, The Four Loves, said, “Friendship is born at that moment when one person says to another, ‘What! You too! I thought I was the only one.’”

I’ve always loved that quote, and I think it explains why social media is such an important resource when you’re dealing with a rare condition such as XLH. Social media eliminates geography. It says, “Find me, and I will share with you.” It links us. It pulls us out of that dark hole we’ve sunk into. As a parent, it helped the healing process, gave me a roadmap and encouraged me to move forward. Social media humanized the condition, and showed me that my beautiful daughter wasn’t defined by her disease. She was just that, my beautiful, incredible daughter.

These days, I use social media to update my friends and family on Ada’s appointments. Occasionally, I post a longer note about her overall status. It’s no longer the lifeline it was in the beginning, but it remains a valuable way to connect and share and explain this journey called XLH.

And, friends, because that’s what Lewis says you all are, thanks for letting me know I’m not alone.