Recently I was called upon to help with the psychiatric part of a case I believe is really PANDAS. In route to that, I’ve been learning a lot more than I knew before and thought it might be helpful to many parents out there as well.
PANDAS stands for Pediatric Auto-immune Neuro-Psychiatric Disease Associated with Strep. One of the hallmark signs is a very abrupt start to either tics or OCD symptoms where none existed before. The strep may or may not be obvious.
In fact, for some kids with PANDAS, they are having sudden psychiatric symptoms and having negative throat cultures. They could be reacting to strep carriers in the family or they could have strep somewhere else in the body not responsive to a throat culture. There is also a related disease called PANS where the same type of symptoms arises from a non-strep illness but that requires another blog.
Parents will often be so aware of how abrupt the OCD or tics are that it’s like their child was totally changed overnight. The psychiatric symptoms can range from mild to severe. Although OCD and/or tics are the most common psychiatric symptoms, in some cases the parents will see rage episodes or sudden fears about eating and refusal to eat.
It’s very important to have these symptoms checked out by a trained professional to make what we call a differential diagnosis. In the case that brought about this article, I was suspicious immediately. I knew OCD didn’t start the way this came on so I knew it was something else.
(Warning: trigger alert. Some of the symptoms written about have the potential to be a trigger for people who have suffered trauma, significant anxiety or abuse.)
It started with a sore throat and the kind of general funk that goes along with a kid getting sick. You probably know the scene: a little more easily emotional, not real happy with the day, not quite acting like the usual kid-self interspersed with times of having a normal day.
Then in the middle of the day, there started to be the expression of highly disturbing thoughts, along with a sense of not being able to keep from telling those thoughts out loud. Now, I know the general public isn’t as used to all the ways that OCD looks as those of us in mental health so I want to give you a couple examples. Warning, these are graphic.
For many parents, hearing such things might make them worry about severe depression or psychosis or even some kind of anti-social behavior (which, by the way, means against society, not someone who doesn’t socialize).
“Mom, my tummy hurts so bad I want to die. I don’t really want to die but I can’t stop thinking that I want to die.”
“Now I’m thinking about shooting my sister. What’s happening? I don’t want to shoot her but I can’t stop thinking that.”
“Now I’m thinking about someone shooting me. Now I’m thinking that I want to die by being on fire. Why won’t these stop?”
“Now I just see a big hole in the ground and I’m in it. There’s a tombstone so I think I’m dead.”
“Now I’m thinking that you are awful. The thoughts are telling me that I’m stupid. Now they are saying that I want to run into traffic and get hit by a car.”
Sorry about that. Those are pretty awful statements to hear, read or even know about, especially coming from a kid. Why did I subject you to that? Well, most people think of OCD as compulsive hand washing, or checking a door lock, or counting things or a variety of rituals. All that is true; those are common compulsions.
OCD also has thoughts that come without the person wanting them and a smaller sub-type of those thoughts are about harm: harm to the person themself or harm to others. When I was reading what’s written for parents, I wasn’t seeing this kind of OCD and I didn’t want parents to miss that these statements are a part of OCD too.
OCD can also bring about a kind of repetitiveness that we psychologists call perseveration. That means that the statements are made over and over and over again. In the case of OCD, it usually feels to the person that they cannot stop from saying the thoughts that are bothering them. For all you parents, if this is your child, it can be highly anxiety provoking in its own right, not to mention all the other worries about your child’s well being. It’s important that you seek some support for yourselves in addition to the child who has PANDAS.
Unfortunately, there are not a lot of providers out there who really specialize in PANDAS so your best bet is likely going to be a medical and mental health provider who knows about PANDAS or is willing to learn more, who doesn’t dismiss it as “not a real disorder”, and who is willing to keep working on solutions.
Although there is more research and PANDAS is becoming more accepted, there are still many people out there who deny the existence of PANDAS. Medical providers may simply shrug it off as a psychiatric illness, especially in the absence of a positive strep test.
Parents must be their children’s strong advocates to learn whether this is what’s happening to their child. In some cases, you might not be more certain until the second episode. When there is PANDAS, the affected child will likely show the psychiatric symptoms at each exposure to strep. Again, sometimes they will come on when there’s strep in a family member.
Although the psychiatric symptoms go away after the strep clears the body, it can take 4-6 weeks after the strep is gone and sometimes the strep is lingering in the cells long after the sore throat resolves. In typical OCD, symptoms generally don’t completely go away but rather they wax and wane in a more steady state.
So what’s a parent to do to help a child with OCD? First, seek the help of a licensed mental health professional. I recommend a therapist first. For the type of PANDAS OCD I described above, there has been some suggestion that anti-depressant medications (what would usually be prescribed with typical OCD) can actually make the thoughts worse.
You can also help your child learn and practice calm, relaxing breathing. Find guided meditations or books that help teach them mindfulness breathing. Be patient and calm with them. Although it’s hard, seeing a freaked out parent will only make things worse for them. Remember, OCD is an anxiety disorder. Because OCD is a disorder of repetitiveness, you will likely have to say and do the same things over and over and over again to help.
I like to teach kids about “worry bullies” and “brain bugs” to help them realize the thoughts are not their own and it’s not their fault they are having them. A fabulous child psychologist friend of mine gave me an analogy of the Mucinex mucus (kids love it when you say “boogers” though) moving in without being invited.
In dealing with the worry bullies and brain bugs (or brain boogers if you prefer), it’s important that the child first can recognize them for what they are, then try to talk back instead of accepting the statements they are “hearing” from the worry bullies. Something along the lines of “That’s not true. I don’t think (or want) that to happen.” “You are just lying to me and I don’t believe you.”
For some kids, “changing the channel” on their thoughts (kind of like changing a TV station they don’t like) to something that feels better will work. For others, it will only make them feel like they are failing when it’s hard to do or doesn’t work. For those kids, it’s important to have them learn to “surf” the thought or feeling until it passes, trying to be as comfortable as possible until it does.
Keeping mind and hands busy with other things can help. Complex coloring pages like a Mandala, some puzzles, paper folding or playing physically can all work well. Be aware that some PANDAS kids can become impulsive so you might want to limit exposure to scissors, sharp objects such as sewing implements or toys that could be used to injure if your child is having harmful thoughts.
This can be a scary journey for all involved. There is help out there however! Find support, find knowledgeable providers and inform yourself the best you can. Please find some helpful resources below:
Cunningham Panel (blood test panel for helping to diagnose PANDAS)
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