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Families With PANDAS: 5 Ways to Cope and Practice Self-Care

PANDAS Support Group

Dealing with PANDAS affects the whole family. Focusing on mental health and wellness for caregivers, parents and siblings may not be easy. But it is a necessary step to overcoming the long-term effects of this disease.

A child experiencing PANDAS may feel confused, overwhelmed and scared. We certainly want to support our children through these often debilitating symptoms. But they aren’t the only ones dealing with daunting changes in their daily life. For your own mental health and the wellbeing of all your children, it’s worth taking some time to acknowledge the extent to which PANDAS affects the entire family.

Parents, caregivers and siblings of children with PANDAS often feel exhausted by the many demands this disease places on them. If your family is dealing with PANDAS, you may feel stressed, ashamed or even guilty. Siblings can end up feeling forgotten and neglected as their parents focus on caring for a child with PANDAS. We know that about 1 in 200 children in the U.S. alone experience PANDAS/PANS. So understand this: you are not alone.

As you and your family work to diagnose and treat your child with PANDAS, it is important to have coping strategies and familiarize yourself with a PANDAS support group and other resources that are available to you. This can help all members of the family better support each other. It can also work toward healing the long-term effects of this difficult disease.

If you don’t know where to start, here are five ways for families with PANDAS to cope and practice self-care.

1. Acknowledge Your Mental Health Struggles and Seek Help for PANDAS PTSD

The first step in making progress and creating room for healing is to acknowledge the many ways each member of your family may be struggling with PANDAS. Parents of children with PANDAS often isolate themselves from other people. Due to the many social pressures this disease creates, they may even feel ashamed of their child. It can be extremely difficult to accept the sudden new reality of PANDAS. The rapid and unexplained changes undergone by a child with PANDAS, combined with the long struggle to get an official diagnosis, can result in Post Traumatic Stress Disorder (PTSD) for caregivers as well as other members of the family.

Acknowledging these broader effects of PANDAS can be difficult. But it is important in order to get your entire family the help and support they need. Odelya Gertel Kraybill, Ph.D., LCPC, ACS, reminds us that “the supportive, loving, predictable, attentive, presence of an attuned caregiver is the building block of the ability to feel safe in the world, engage in relationships, and claim our space in society.”

As you begin to seek ways to support yourself emotionally, you will likely find that other family members are also in need of a safe space to express their feelings. Create an open environment by being the first to acknowledge your own feelings and the need for therapy and support. Remind yourself, and your family, that it’s okay not to be okay.

2. Find a Therapist Who Works for Your Family

Finding a trusted therapist who is familiar with the struggles families with neurodivergent children go through can help you work through the complex emotions and many PTSD triggers of living with PANDAS. Additionally, a qualified therapist will be able to focus on not only treating PTSD symptoms but also addressing the core trauma that parents and families often experience during the long struggle with this disease.

PANDAS affects each member of the family differently. So it is important that every member of the family can get professional support to help address their specific needs. Odelya Gertel Kraybill is a trauma specialist, psychotherapist and consultant who developed Expressive Trauma Integration™ (ETI) therapy. She provides extensive information and resources on PTSD, parental and family trauma, and the challenges a disease like PANDAS can create for the family unit. Her website is also an excellent resource when learning what to look for in a family therapist.

3. Build Your Support System

Many children with PANDAS find themselves cut off from their school and social networks. But dealing with this disease can also be an isolating experience for parents and other family members. It is essential to have a widespread support system, especially one that includes other families dealing with PANDAS. Again, with 1 in 200 children in the U.S. impacted by PANDAS, it’s important to remember that you’re not alone. You will find many people who understand what you’re going through and can share their experiences and valuable insights.

Wondering where to begin? PANDAS Network can help you find a PANDAS support group in your area—both in the U.S. and internationally. There are also many Facebook support groups you can join. We maintain a frequently updated selection of PANDAS resources for parents, which you can use to search for recommendations on therapists, healthcare providers, and a support group who can help your family.

4. Prioritize Self-Care

When you are under a great deal of stress, your brain jumps into fight-or-flight mode and lessens your ability to see a complex situation clearly. That’s one reason self-care is so important. For many parents, it can feel like there is no time left to focus on yourself, but learning how to do some quick self-care exercises throughout the week can make a huge difference.

Consider the saying, “you can’t pour from an empty cup.” As a parent or caregiver, if you don’t give yourself the time and space you need to mentally rest and recharge, you won’t be able to provide the love and support your family needs. Many PANDAS parents find that when they are overwhelmed with stress, it can cause more negative emotions and frustration in other areas of life. So take this as a sign to take a break and carve out specific time for self-care.

Here are some ideas for self-care exercises that take less than 5 minutes:

  • Journaling
  • Practice deep breathing techniques
  • Take a quick walk or step outside for a moment to feel the fresh air
  • Take a hot shower
  • Listen to a song or soothing sounds

By prioritizing self-care for yourself, you will also set a good example for your family. If possible, you can even try to create specific times for self-care for each member of the family.

5. Create 1-on-1 Time for Every Member of the Family

Remember that PANDAS doesn’t just affect your child who’s been diagnosed—it impacts the entire family. It is important to make sure you’re giving each sibling dedicated and focused time for your attention. Try planning “parent dates” or outings with each child so they can get the care and connection they so desperately need.

While making this time for each child can feel difficult, we promise it is worth the effort and extra organization. Sometimes siblings of a child with PANDAS experience other health, academic or emotional issues due to the stress and trauma of their home and family situation. Just a little bit of personal time and attention can go a long way toward supporting their mental health and wellness.

Remember: There Is Always Hope

Family exhaustion, lack of predictability, the toll of fight-or-flight reactions—these are all everyday realities when you have a sick child. Keep in mind that though the recovery process is often long, PANDAS is not permanent. As research continues and we await treatment breakthroughs, there is also hope for healing and support through the larger PANDAS community, including through a support group.

That’s why PANDAS Network is here. We hope you will continue to use our resources to support your family throughout the entire diagnosis and recovery process, and beyond. If you think your child may be suffering from PANDAS, it’s important to find a doctor who can help. Learn more about common signs and symptoms or refer to our PANDAS symptoms checklist to get more information.