This site offers a framework to care for and heal a child with Lyme and tick-borne disease, disability, or chronic illness.
Medical care is not enough to heal a child with Lyme and tick-borne disease. These 8 Steps address lifestyle and environmental aspects of care (and self-care!) that are necessary to create a supportive environment for healing.
You must take care of yourself to effectively create an environment that supports your child’s healing, and to maintain a healthy home for the rest of your family. This is not about ‘putting the oxygen mask on first” - you are flying the plane! Self-care is not a luxury, it’s a necessity. It is not easy to prioritize your own needs when there are so many others’, but it is an absolutely essential part of the process of caregiving and healing.
Creating a self-care plan before you need one helps you make (and model) healthy choices. Proactively caring for your own needs will ensure you have the energy and spirit to care for your child and family, and will help prevent ‘burnout’ and ‘compassion fatigue’.
The experience of caring for a child with a tick-borne illness can be very challenging. You will need people who can love and accept your child and family, and support you through this challenging time. (Hint: These may not always be the people you expect!) Families affected by Lyme disease, pediatric illness, or disability can experience social isolation, unhealthy stress, and financial difficulties. These circumstances can affect even close relationships. Know whom you can count on for support.
It is common in Western medicine to think of being “healed‘” or “well” as the absence of illness – but for some children with Lyme or chronic conditions, healing may be a long journey. Define healing on your own terms. It may be an improvement in social skills, attending school more often, or being able to resume team sports. Creating goals that represent milestones will help you appreciate progress being made – even if your child is not “cured”. Your definition of healing may change as the illness, context and environment change, but make sure your doctor knows what is most important to you, your family, and your child.
Some children with tick-borne illness or chronic conditions can be extra-sensitive to pesticides, toxic chemicals, and mold, dust or other allergens. Make sure produce is washed thoroughly and purchase organic vegetables when they are affordable. Use non-toxic alternatives to clean your home, and avoid products containing harmful chemicals (this may include everything from cleaning or laundry supplies to house paint). Be aware that some personal care products may contain chemicals considered toxic or carcinogenic.
When a child has a tick-borne disease, their body is already in chaos. They will benefit from a home environment that is orderly, safe, and predictable. In our culture it is common to live more reactive, busy lives that may not encourage the rhythms that promote healing and well-being. Rituals, routines, simplicity and order will all help your child (and you!) relax amidst the struggle and challenge of an illness or disability.
Physicians, nurse practitioners, teachers and other professionals are an important and useful resource to help you determine the best path to healing, but parents and children need to be empowered to advocate for their own perspective, needs and priorities. Also, your needs and priorities may change – and that is okay.
Trust your gut, and work to collaborate with health and education professionals who may need some help understanding the nuances of your child’s illness or disability, and the specific needs of your family.
You and your child may not be able to maintain your current schedule of commitments and activities. A good rule is: At least 50% of your energy that was spent elsewhere needs to be redirected towards healing. This includes attending to your own well-being as you work hard to support your child and family’s.
Personal and professional goals may need to be put on hold temporarily. Plans may need to be redesigned to accommodate flaring symptoms, or physical or psychological limitations. During this time, try to make each day count in its own way – knowing that an accumulation of good days will keep you on track for when you and your family are ready to recommit to goals and plans that may have been put on hold.
For many children with Lyme disease or chronic illness, multiple areas of health and well-being need attention. Interventions such as massage, naturopathy, environmental medicine, yoga practice, tutoring, acupuncture, exercise, food choices, herbs, and social skills support can help promote healing and well-being. While a healthy skepticism is important, be open minded about non-medical interventions and lifestyle choices that could contribute to a positive outcome.
A temporary reduction in work hours, extracurricular activities, and travel or social plans may be necessary for healing. Revise your lifestyle to allow for flexibility. Days off school, travel to doctor appointments, and time to rest, will all be more challenging if you are trying to ‘fit them in’ to your established routine. Remember, Lyme symptoms can change on a day-to-day basis. You may not always be able to plan ahead, and will sometimes need to make last minute changes to your schedule.
Nutrition can be an essential part of creating an environment supportive of healing in your child’s body. This has helped many children with a tick-borne illness or disability (including ADHD) control inflammation and symptoms. Multiple online resources are available for recipes and ideas about making changes to your family’s diet. It requires commitment, and planning ahead for special occasions and holidays, but it can be an important part of helping your child heal.
It is challenging to manage medications, cook nutritional meals, make lifestyle changes, and educate yourself and others about Lyme disease and chronic illness in children. You may need support in building the skills necessary to manage the many areas of life affected by your child’s illness.
