It’s heart-breaking hearing your child tell you they don’t want to feel sick anymore. Or maybe they want to feel “normal” like other kids. At a certain point in their life, our kids are aware they are different than other children. Physically, emotionally or mentally. No matter what the disorder it’s sad to hear, “Maybe it will never come back.”
What can we do to empower our children?
We need to give our children skills to cope with their condition. We need them to learn how to handle their symptoms, control their disorder and live life to the fullest.
Teaching your child to identify symptoms as soon as they begin is important. For some children, this might be the stage to treat with medication to end the suffering or pain soon to follow. For others, it might just be a preparation to begin to handle the days to follow. It’s the high alert stage.
For some disorders, medication is tough to regulate. As your child grows and ages, the dosage may change and symptoms may return. It’s important your child can identify the symptoms and the need to get additional medication or dosage changes. The right timing in treating any condition is crucial to avoid unnecessary suffering and side effects from your child’s disorder.
For PFAPA, if you are choosing to occasionally use prednisone, having your child identify warning signs BEFORE the fever begins is critical in effective use. If you wait too long the prednisone doesn’t work. If you are choosing to avoid prednisone treatment, identifying warning signs will help your child get ready for what is coming up.
If they are in school they will need to learn when to start gathering homework assignments and in-school assignments for the next few days. Hopefully, they won’t need them, but if they end up at home with symptoms or problems they will have them. It’s about learning to be proactive and knowing what to expect from their condition.
Teach Them to Self-Advocate
Although we want to protect our children always, the fact is they will need to ask for assistance for quite awhile with their condition. It’s important for your child to know when they need to ask for help, or when they need to medicate. If they can sense when medication is needed they will know when to seek help and ask.
If they know the severity levels of their illness and what might be to come, they can also make their own decisions on medication. They will learn when they reach a certain discomfort level they need to ask for help.
This is important at home to help you and also important if they go to a babysitter or school. They may develop symptoms in other locations and need help. Knowing when and what they need is important.
Teach Them To Educate
Their condition might not be well-known, or maybe it is but I am sure it has a lot of misconceptions out there. This makes it important for them to share what they know. The younger they are the more difficult this task will be. Keeping it simple in your explanation will help them better communicate their condition to others. They will need to share with school teachers, nurses, other parents, babysitters, and family. Having the correct vocabulary and understanding of their disease will help them educate others. It’s important to be open and honest so your child can do the same.
Not every condition can be completely prevented. There are symptoms with every condition that we can try to minimize. This is what we want to aim for. If you know your child’s condition has a trigger point where things just turn for the worse, teach your child skills to keep that turning point away. It might be extra sleep. It might be making sure there is at least one day a week or during the weekend that is very low key. It might be monitoring other foods or supplements the child takes to keep inflammation or body issues at bay.
In our case, it is healing and handling mouth sores and recovering sleep as much as possible. Each episode begins with mouth sores before the fever and ends with a lot of sleep loss. We work to heal the sores quickly (and try to prevent them), and recover that sleep.
Wellbeing maintenance is important. It’s hard enough for their little bodies to experience such trauma and pain continually. Research your child’s condition and understand what small things might be done to prevent or ease symptoms when they begin.
Please share what you do to help your child be self sufficient with their disorder. I would love to hear from you.
Want to learn more about How to Get a Diagnosis, or help your child? Check out my How To Get a Diagnosis book to get tools to work with your doctor to get help. Want to learn more about PFAPA? Coming soon – A Glimpse into PFAPA & Other Periodic Fever Disorders.