Parenting kids with migraine leads to new children’s book
By: Joanne McPhail, author of Milly Has A Migraine
When I was 24, I had my first migraine attacks, and they came on strong while articling for a firm in Toronto, Ontario. At first, I didn’t know what they were, and it took some time to be diagnosed. I then spent a lot of time finding the right medications and the right doctors, to help me. It was a tough struggle, as any migraine sufferer knows. But nothing prepared me for having children with migraine. I guess it never occurred to me that young kids could suffer, because I only started having them as an adult. And it also didn’t occur to me that both my children could inherit the affliction.
It was a very difficult journey for both my kids. Again, diagnosis took some time, especially with my daughter who, at first, just had bad stomach pain. Both children unfortunately had locked-in migraine attacks for sometimes weeks on end. No, it wasn’t medication overuse, as we were very careful about that. It was just bad fortune. We were lucky to find a pediatric neurologist who specialises in migraine, and I know that is extremely lucky. But the best migraine doctors in the world cannot snap their fingers and fix it. Unfortunately, every case is different (even my two kids’) and the long journey to trying to work out their triggers, the best medications, etc. began. I do remember, at one point, the doctor reassuring us that, although it could be a long process, we would figure it out together. Those words were so incredibly comforting at the time.
While going through the process of medication trials, and calendaring food and weather, sleep and hydration, my kids also went through missed school, sports, friends and social interactions. We watched a lot of TV together, and I can still picture both of them, at different times, with hoodies over their heads, ice packs across their necks, sadly sitting on the couch (I wouldn’t let them stay in bed) with dark circles under, and sadness in, their eyes.
I am not sure what was worse as a parent; watching them in pain and not being able to fix it, or watching their emotional struggles and not having a band-aid for that either. Having a lot of migraine attacks can be so difficult in so many ways. From people not understanding the whole-body experience of a migraine and wondering why you can’t just carry on with a headache; to people thinking you are exaggerating or making things up. Then there is just being forgotten about (out of sight, out of mind), left out and missing out. My kids were both sports kids, and I cannot tell you how much guilt we all had about practices and games missed. I will say that I probably didn’t help at those times, as I myself felt badly about them missing these things, and likely contributed unwittingly, to their stress. With a little distance, it’s easier to reflect on these things and reflect on what I could have done better.
My kids are in their early twenties now, and are doing well. The distance, and lessened stress, has allowed me to sit back and think about some of these issues. I decided we needed a children’s book to help explain migraine. I was struck by how many children actually have migraine, and how little people know about the disease. So, I wrote Milly has a Migraine, which is a story of a little girl who has to manage chronic migraine. The book is aimed at children ages 4 to 8. I hope the young heroine, Milly, will help teach kids what it’s like to get migraine attacks, while also reassuring children who suffer from them that they are not alone.
I have been really touched by the response so far. I am happy if it has helped even one person. If you have a child who suffers, or know someone who does, I hope it helps just a little bit. It has certainly been a cathartic journey for me.
The book is available now on Amazon.
In the UK: https://rb.gy/9tget
In Canada: https://a.co/d/2NosBBs
In the United States: https://a.co/d/eveZp9i
and on amazon worldwide.
You can also follow the Milly Has A Migraine Facebook page here.
If you are a parent or a carer of a child with migraine, you can find information about children’s migraine here. Information and resources for children and young people living with migraine can be found here.