There is nothing more difficult than making it through a high fever episode with your child. Ours suffers for five days in a row, every 23 days, each month.
Some Simple Things We Do To Help
1- Cotton pajamas and cotton clothing during an episode.
Some fevers are so high (105.6) it’s important to do as much as you can to keep your child’s body cool. It’s important to do this in a way that is not uncomfortable for them. Cotton does that. It can breathe. Fleece and flannel are worse for high body temperatures.
2- Allow them to pick and choose certain foods.
We are a household where you eat what is in front of you and that’s it. Mom doesn’t make multiple dinners… except during an episode. Honestly, Parker doesn’t really eat at all for nearly five days. But what he wants to eat is usually smooth, cool food and he gets that. Speaking from experience there is nothing more painful than a mouth full of open sores.
3- WATER WATER WATER
There are times when the fever breaks for a few hours usually during sleep. He is sweaty. He isn’t eating either. So making sure your child has plenty of water at all times is so important in handling fevers. We let him sleep with a full water bottle next to him in bed.
4- Make sure they are sleeping
We are sure to get Parker into bed early. We let him sleep as long as he needs before he wakes up. This means sometimes I am late for work, or someone has to stay home from work with him. There are times we sleep in his room with him. This way everyone sleeps.
5- Communicate openly about PFAPA
Tell your family members, daycare, teachers, friends and everyone you know what PFAPA is. The more they know and understand the more support and help you will have. Nobody will know what you go through. You need a support system of people who can help you when you ask.
There’s so much more to caring for a child with this condition. These are just a few simple things we do.
What is PFAPA?
This is a (possibly) rare periodic fever condition (Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome). It causes high fevers, mouth sores, swollen tonsils, achy joints, and sometimes stomach upset. It is not caused by a virus or bacteria. It is not an infection. It is an autoimmune disorder. The child’s immune system is fighting against itself and their own body. The fever is a result of an inflammatory immune process happening in their body. The other symptoms are also part of that response. Missed it and want to know more? Read our other post on PFAPA.
Coming soon! PFAPA and Other Periodic Fever Conditions. A Guide to Help Parents with PFAPA (and other periodic fever) kids.
Need help with a diagnosis? Check out How To Get A Diagnosis.