Parenting a child with PANDAS can be demanding and overwhelming. Never forget that others have experienced the same worries and fears, and that you are not alone. At the end of this section, there is a list of some suggestions others have found helpful in coping when parenting a child with PANDAS.
Please feel free to contact us if you have more suggestions. Often friends or family do not understand why you need support during this time, consider forwarding this to them. Perhaps reading this will give them an idea of what you’re going through.
WHEN THE CHILD SUFFERS, THE PARENT SUFFERS TOO
When many think of Post-Traumatic Stress, they think of those in the military or those who have lived through hurricanes or similar catastrophic events. But Post-Traumatic Stress can occur as a result of any traumatic event that literally turns your world upside down. One prime example of such an event is PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococci).
PANDAS can occur out of nowhere and can be compared to a strep induced tsunami. One day you have a healthy, happy, “typical” child and in literally one heartbeat, chaos breaks loose and they are gone. Without any warning, you have this entity that seems to have taken over your child’s pure, innocent body and left them filled with fear, anger, anxiety, and rage. It feels as though the child you know has been kidnapped or replaced. You go from taking them to soccer practice or playing a family game, to suddenly being considered contaminated.
Kids may have tics or uncontrollable movements and beg you to help them stop them, but you can‘t. Hugs and kisses are replaced with hurtful words that they don’t really mean. According to them, you may do nothing right. You don’t look at them right, you don’t say things in the right sequence or tone and it sends them into a meltdown. You may see your child unable to eat, dress themselves, or bathe. One of the worst things is when your child now views you as a true enemy and their instinct is to fight you to survive.
As a parent, in one way it feels like you’ve been thrown into a war zone, but you don’t really have a physical opposition to overcome, instead you have your child who you just want to desperately save. You search for help for them and you are faced with the reality that not many want to help or can. You feel scared. You feel alone. You panic. During this time, as a parent you know you must be strong, but you are also only human. You fight for your baby and try to do research throughout the night while in the morning your child awakes and the battle begins once more. You find yourself crying, mourning. Perhaps sitting on the floor rocking yourself back and forth hyperventilating when you just can’t figure out what to do, what the future may hold, or why this had to happen.
You then look at your other children and wonder “How can I do this? How can I give my other children what they need and deserve? It‘s not fair to them.” You feel they are neglected as you focus endless hours on the PANDAS child. It’s hard to explain what is going on to siblings, especially younger ones, when you yourself don’t fully understand nor have the answers.
Another consideration is your spouse. You’re a team; yet you feel divided at times. There is little time for intimacy or laughter. Both of you unintentionally or even unknowingly filter your frustration onto the other person. Anger boils over when considering ways to best heal the child and how to resolve each situation as it arises.
Most parents will tell you that even if their child eventually gets better and symptoms fade away, the parents live in a world where their own anxiety and fears remains. Hearing or simply reading the word “strep” makes your heart beat faster. Your instinct is to protect your child from ever experiencing those dreadful days again, but you know you cannot fully do that. You feel helpless. Parents want to enjoy having their child back, but in the back of your mind you fear losing them again and cannot bear the thought of reliving those life changing PANDAS symptoms. Simple childhood quirks are seen as a possible foreshadowing of an impending exacerbation. If you are left alone with your thoughts, they may wander off and you begin to vividly remember the past drama. You find yourself reliving all those emotions again and even if your child is doing well, you start shedding tears.
As for myself, my child is in remission but I can stare off and in my mind, visualize specific meltdowns, rages, and other experiences. I see those moments as though they are happening right now and the emotions flood back pretty quickly. Not a single day goes by that I don’t worry about losing my child again nor do I forget how important it is to enjoy my child and let myself be happy. I’ve learned to try my best to hide the nervousness and act normal, whatever my normal is now.
PANDAS has psychologically scarred me in ways that not many will understand. I guess you can say that I live in the moment, but must try to prepare myself for a possible re-occurrence. I, myself, don’t feel I will ever fully recover from seeing my child suffer so badly, but I’ve had to attempt to find a balance. A balance between the past nightmares we’ve lived and new healthy, smiled filled memories waiting to be made…all while a small storm cloud follows us, reminding us it could always happen again.
So, this leads many to ask, what should we do? How are we supposed to cope? Even though nothing in the world can replace having your child back or erase the memories, there are some things one can do that may help.
Connect with other parents over the phone. The internet is a great resource, but nothing replaces hearing someone else’s voice. Don’t be shy to ask if you can call. Perhaps coordinate a day and time so the phone call can go smoothly.
Journal. A journal is useful for many reasons. As the parent, it helps you release emotions that you feel you must keep inside during the day. Sometimes the fears and feelings parents have are hard to verbally share. Journaling allows you to keep some feelings private, if you wish, while giving you the ability to have an outlet. You don’t need to write a book every night. Even one sentence or “bullet words” may help. Or if you’re really frustrated, just scribble. You can also let you journaling serve as a double purpose buy jotting down some observations of your child that you can reference back to later if you want to chart treatment and recovery.
Search for in-person support groups. There are supports groups scattered across the country. If you cannot find one near you, consider starting one yourself. It’s probably safe to say that there are others in your area just waiting for someone else to meet as well. Seeing the face of someone who has experienced what you have would be an amazing feeling.
Search for on-line support groups. There are several on-line support groups to choose from. Visit them and then choose which one you feel most connect to and comfortable with. If at any point, you feel it isn’t a good match anymore, move on. Remember that a support group should be supportive and should feel like a safe zone.
Address your marital problems. Due to the stress, worry and the time it takes to heal the PANDAS child most marriages struggle during this illness. Accept that it may take up to a year to see your family back to the stable quality you enjoy. Try not to blame each other and accept that this is just one of those periods in life where patience, prayer or meditation, quiet walks in the neighborhood are what are required. Keep life simple. Try to remember that some words that are exchanged are done so out of sheer exhaustion. All will return to normal in the future.
Some siblings may have seen their parents behave in ways you hope they’d never witness – anger, tears, fear, sleepless, exhausted, etc. What I have found is my children have become MORE RESILIENT. The appreciation from the PANDAS child in the family tolerating the difficult times is clear. The siblings may require time to talk about their anger and fear after the healing began to take place. But they are strong and accepting of others differences and frailties. During the difficult times, if you can, have some alone time with the other children. Acknowledge the sacrifices they have to make and remind them you love them. Find patience with them as well as they may be confused by what is going on and some kids have even mimicked their PANDAS siblings in hopes of getting the same attention. This is a hard time for them as well.
Allow yourself to cry. Remember that crying is not a sign of weakness. You are crying because of the love you have for your child. Realize the strength you exude to simply face what PANDAS has handed you. Crying, worrying, and self doubt are not only okay, but probably expected. The fact that you eventually get up and decide to keep fighting shows your strength and perseverance.
Exercise. Some parents have said that exercise is a great outlet for pent up feelings. It allows you a release.
Seek out a professional to talk to. Some find it best to seek out a therapist to sit with and open up to.
Know that you are not alone. Never forget there are others fighting the same fight, and there are people trying to make this fight easier and want to see all our kids better.