Sudden extreme changes in your child’s behavior can very quickly bring up some unpleasant feelings for parents. Children affected by PANS or PANDAS often demonstrate dramatic changes in behavior. They often develop severe anxiety, depression, OCD behaviors, and, worse yet, they can become VERY defiant.
This is my story.
I have a daughter. Her name is Emma. When Emma was just 12 years old she developed pediatric acute-onset neuropsychiatric syndrome (PANS).
Seemingly overnight she developed extreme obsessions about cleanliness. She was soon washing her hands 20-30 times a day. She would scrub her hands until they bled. She had religious obsessions and dark thoughts. She became convinced that God did not like her. She stopped eating what we cooked for dinner because she was concerned that the food we cooked was raw or contaminated and thought that it would make her sick. She also developed severe insomnia.
What I was not prepared for was the defiance.
Emma has 4 brothers and she was always the most compliant and obedient of our children growing up. She looked out for her brothers and often did their chores for them because that is the kind of person she is.
Suddenly, Emma was refusing to go to sleep. She was repeating questions over and over. She wanted reassurance that food was clean or she was clean. She would confess things she had done or thoughts she had. No matter how many times we answered her questions, it was never enough. There was always “just one more question.”
When her mom and I had enough, we would tell her to go to bed. I can remember one night that Emma stomped her foot and said (at the highest volume she could muster), “I’m not going to my room and you can’t make me!” She demanded that we answer her questions or she would not comply.
She started stealing soap from her brothers after we restricted the amount she could use to wash her hands or shower with. She started using profanity. (We were baffled at where she had learned those words!) The screaming and banging on our door at night kept her brothers from sleeping. She actually kicked our bedroom door off of its frame – twice. When we had to leave the house, she refused to get in the car.
Every time this happened I could feel myself clenching my teeth. My breathing changed. I felt stiff and tense. And that’s when the thoughts would flood my mind. I thought…
Children are supposed to OBEY their parents without question…
Other people’s children obey their parents…
Maybe I need to punish her to FORCE her to obey….
I’m not going to raise some entitled brat…
She doesn’t act like this when she goes out, maybe she is just a big fake…
These thoughts hit me deep in my soul. At the identity level. You see, what sprang off of the thoughts above were thoughts which were far more painful, like…
Maybe if I were a better father she would listen…
Maybe something I did or didn’t do caused this…
Real men fix things…
My parents divorced when I was 3 and I never knew my father. Maybe I’ll NEVER know how to do this…
To avoid failing at this task, I ended up doing things that ultimately caused the situation to worsen. First, I would drop the hammer and take away every pleasurable experience she could have. No computer. No TV. No drawing. I removed things from her room. I am ashamed to say I even destroyed some of her toys because I was convinced this would teach her to obey.
This does not work because children with PANS and PANDAS act the way they do because they are TERRIFIED. I almost object to defiance as being listed as one of the PANS diagnostic criteria because the defiant behavior stems almost exclusively from times when these kids are plagued with intrusive thoughts or severe bouts of anxiety.
I always tell parents to imagine they are sitting in a chair, and I walked up and threw a poisonous snake on them while telling them they are not allowed to move from the chair or speak. As you can imagine, if YOU were sitting in the chair, I’m sure you would disobey the instructions and get up from the chair screaming. I also imagine you would have some choice words for me as you were leaving.
It is best to think of PANS/PANDAS as a physical illness (because it is). I tell parents to think of it like you would an amputation. If your child lost a leg, you would not yell at them when they could not climb the steps. You would help them.
This is what our children should expect from us dads, especially when they are sick. Parenting a child with PANS/PANDAS can look like “permissive parenting” to other parents who are fortunate enough not to have a child with these disorders. When your child melts down, be calm. If you are in a public place, you may need to leave, even before your shopping is done.
Of course there have to be rules, and physical violence toward themselves and others should never be tolerated. The secret pearl here is that you have to do what is best to heal your family and your child without worrying what anyone else thinks.
This took me a long time to learn. I eventually apologized to Emma after she recovered from the harsh authoritarian nonsense I thought would force her to comply. She needed grace and understanding. She needed a father who was controlled and resourceful. So, my first tip for effective parenting in PANS/PANDAS is:
I got much better at this as Emma started to recover. I remember once sitting in my front yard with Emma at our house. I had a pile of dog poop in my hand. It was part of her CBT therapy for her OCD. I had to be resourceful to show her that touching dirt (or poop in this case) would not kill me.
What else did I try?
The second failed strategy I employed was that I just disappeared. Maybe because the first approach was failing. Maybe because I thought going to the music store to look at and buy new instruments would give me some sense of self worth. It did at least give me the chance to not have to deal with something I could not fix…
The problem with this approach is two fold. First, my daughter needed me. If nothing else, she needed to see me continue to show up when things got hard. The second problem with this approach is that it left my wife alone to weather the storm. In my experience, both parents of children with PANS and PANDAS have the same thoughts.
They struggle with feelings of guilt. (Read about that here). They feel that something they did or did not do caused this. Leaving your partner alone at this time can reinforce those feelings of guilt. In addition, being a parent of a child with PANS/PANDAS is very, very lonely.
I always tell parents when addressing this that family and friends often become scarce. I’m not sure if they think PANS/PANDAS are contagious or if they just don’t know what to say. I guess they are disappearing too. I remember once when Emma was sick, a family from church brought us a meal. They dropped it off in the driveway and never even came to the door.
So my second tip for effective parenting in PANS/PANDAS is:
My third and final tip for effective parenting in PANS/PANDAS is:
A united front is how the hardest wars are won. And PANS/PANDAS is a battle for sure. A great place to start to learn is the blog archive on our website. If you start here, you can type PANS or PANDAS in the search bar and find many more helpful tips.
I hope you’ve found this blog informative and hopefully it can help you to avoid some of the mistakes I made when my daughter was sick – so you will have less to apologize for when they get better! If you would like your child to be seen at The Center for Fully Functional Health, call (317) 989-8463 or read more about how to become a patient.
There is ALWAYS hope.
Sincerely,
Dr. Scott
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