A note from Dr. Scott and Dr. Ellen: Although this was originally written to married couples, it is also for those of you who are not married and have a partner or even a very close friend who is your person.
It's hard to explain the impact of childhood illness on the family to someone who has not had a sick child. This is especially true for parents of children with PANS/PANDAS. Although it is never easy to have a child who is sick, there are particular challenges when a child has PANS or PANDAS.
When a child is diagnosed with cancer or has a traumatic injury, family and friends come out of the woodwork to help. Meals are delivered and social media support groups are made. Prayer meetings are held and well wishers consistently check up on you and your child. That is rarely the case with PANS/PANDAS. When your child is sick with PANS/PANDAS, people tend to scatter.
It's hard to know why this occurs. It may be because people don't know how to deal with mental illness on the same level as other illnesses. It could also be due to the fact that PANS/PANDAS are controversial and poorly understood by conventional physicians, if they believe in it at all. When our daughter developed PANS, our close family members called, listened, and tried to help, but most friends (even those from church) suddenly stopped calling. One family from church did deliver a meal once - and left it in the driveway.
Worse than the isolation, though, is the judgment you may feel from some family members, friends, and physicians. Parents of more than one of our patients have been told by their family or their doctor that their child's behavior was due to their permissive parenting or marital problems. The isolation and judgment combined may make this the loneliest time in your life.
It is very common for moms to feel extremely guilty as if somehow, in some way, this is their fault - which of course it isn't. Dads have their own struggles, often centering around how to discipline a very defiant child and how to deal with the fact that there is no quick fix to these complex problems.
The sheer uncertainty of what any day will bring can wreak havoc on family life. If there are other children in the house, the stress of having a sibling with PANS or PANDAS can affect them for years to come. Anxiety, depression, and even PTSD can be seen in siblings.
The best way to protect your other children (and each other) is to come together and face every challenge as a team.
We were designed to draw strength and comfort from other human beings. However, failure to be intentional about your closest earthly relationship can further isolate you and will not leave you in the best position to care for your child. Based upon our experience and what we have seen work in many families, we have compiled a list of 10 things you can do to PANDAS-proof your marriage:
1. Find good friends or family who will stay with your child. Even if it's for 5 minutes while you walk around the block together and talk or, better yet, go on a date. It's important to take this time for each other and avoid any talk about your child or the stress of illness. Clearing your mind with time alone can be life-changing.
2. Always assume the best of each other. It's easy in marriage or any close relationship to hold a grudge if you feel wronged or assume someone's motives are selfish. If you follow the simple rule of committing to always think the best of each other's motives and desires, it really will help avoid unnecessary arguments.
3. Find time to take your other children out separately from your child with PANS/PANDAS. It's important that they get some individual attention, since so much of the family's energy goes toward healing your sick child.
4. Give each other a break. Arrange times to stay with your child so that your spouse or partner can perform self-care. Self-care lowers stress hormones and can improve your own immune response.
5. Pray or meditate with your spouse or partner. The intimacy of prayer or meditation together can multiply the peace and connection that you feel. Making a regular time to get together for this activity can be particularly helpful.
6. Go to your child's doctor's appointments and school meetings with your spouse or partner whenever possible. Often one parent (usually Mom) bears the brunt of keeping track of and attending these appointments. Make sure both of you know the medical information, what meds and supplements your child takes, and the general course of your child's treatment and support. This will avoid one of you alone having to bear the stress of recordkeeping, medication administration, medical decisions, and school interventions.
7. Keep up physical touch and intimacy with your spouse or partner. This is good advice for anyone in a long term relationship. Stressful times can tend to cause us to withdraw from one another, but physical touch has important emotional and hormonal benefits. The couples that weather the PANS/PANDAS storm best continue to prioritize physical touch. Do remember, though, to read the situation and communicate, since stress can lower sex hormones and result in lowered libido. Keep the emphasis on hugging, cuddling, or massage, with sexual contact only if both partners are up for it.
8. Don't let your child with PANS/PANDAS triangulate you and your spouse or partner. Your child should understand that the two of you are a united front. If you have any disagreement, it should always be discussed in private. You should also do your best to make sure that your child is not asking you for something that the other parent has already said no to. Children with PANS/PANDAS can be quite manipulative and selfish.
9. Use family medical leave if you are able. The presence of two parents at home with increased frequency can really make a difference for the primary caretaker. It is a great way to lessen the loneliness which is common in these disorders.
10. Remember that, as hard as PANS and PANDAS are, you are being given the opportunity to show your children how to respond to adversity and how to stick together when times get tough. It can also be helpful to reframe the situation and ask yourself in what way this is happening for you rather than to you.
The Center for Fully Functional Health is proud and privileged to be the nation's foremost experts in the treatment of PANS and PANDAS. If you suspect or have a diagnosis of PANS/PANDAS, please contact our office at (317) 989-8463 or online to schedule your child's New Patient Appointment Package with Dr. Scott Antoine. Hope and healing are in reach.
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The Center for Fully Functional Health® is led by a team of award-winning, internationally recognized physicians, committed to providing personalized, life-changing care.