What is PANDAS?
Imagine your child waking up one morning and they seem completely different. Not a gradual change but an immediate change. Their language may be different, the way they are talking can be different, they are mentioning fears they’ve never mentioned before, their choosing not to eat, they are raging with anger, their anxiety is out of control, they may be doing a lot of tics. They may even have some psychotic symptoms such as seeing or hearing things. It may look like full-blown OCD symptoms all in one night. These personality changes can change in an instant.
Let's talk about PANDAS. No not that kind of panda. You may or may not have heard of this. PANDAS stands for: are you ready for this:
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
Say that five times fast.
Pandas occurs when the strep virus triggers a misdirected immune response and results in inflammation on the child’s brain. Neurologists believe it affects the basal ganglia of the brain. It is Estimated that one and two children may be affected.
A clinical diagnosis of PANDAS is defined by the following criteria:
• Presence of significant obsessions, compulsions, and/or tics
• Abrupt onset of symptoms
• Happens before puberty
• There is an association with a strep infection
Obviously, the strep virus is very common. Many children get step. This doesn’t mean they automatically have pandas.
When looking for strep, did you know that it can occur and reside in somebody’s sinuses, their ears, their gut, or in other areas of their body. So when individuals get a throat swab, the strep virus maybe missed. It has been said that the majority of strep infections are missed.
Individuals may do blood work to see the amount of titers. An elevated anti-strep titer means the child has had a strep infection sometime within the past few months, and his or her body created antibodies to fight the strep bacteria.
Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations.
One of the most common diagnostic tools I have seen individuals use is called the Cunningham panel. This tests the likelihood of the child having PANDAS.
So here’s the dealio, a lot of emails and phone calls I get regarding pandas start like this…. “do you believe that pandas exists” --- is not such an interesting question? People ask this because there is a lot of information and even doctors who say that this does not exist. While I am not a medical doctor, but in the licensed professional, I have seen many individuals come through my office who exhibit a sudden onset of OCD symptoms and or tics. Sometimes mixed with rage and anger. Sometimes mixed with psychosis. And what I mean sudden onset, I mean sometimes literally overnight.
How scary and confusing this is for parents. For me, I absolutely believe that pandas exists, according to research that I’ve studied as well as individual cases that I have. Because this is what I see, an individual with all of the symptoms is going through what they call a “flare” - where symptoms may increase and last for typically 5 to 6 weeks and then gradually dies out. This may be the time where they were exposed to other viruses or the strep virus in their body is elevated.
This is a pattern that an individual may go through time and time and time again. Typically these infections dictate the need of an antibiotic. Penicillin seems to be the first choice because it is well studied. I wouldn’t believe it if I haven’t seen it with my own eyes, but when an individual starts their antibiotics, their symptoms start decreasing. The treatment that we are working on tends to work much better.
Individuals may do what is called IVIG. It essentially is an IV that injects immunoglobulin, some say this is been able to reset the immune system. This is made from thousands of human donors.
So as far as the medical side goes, in individual may see an OCD therapist to take care of some of those symptoms. We use exposure and response prevention. To teach the brain to respond completely different to the anxiety and fears that come their way. Individuals that experience pandas will have different OCD themes. These can be seen just the same as somebody that has OCD.
So ultimately, what I want to get you to know out of this whole video is this. Get proper treatment if possible. Exposure and response prevention for the OCD symptoms, CBIT for the tics and a medical trained professional for the physical body and brain. I tend to go to the pandasnetwork.org to find a professional near you. With the information I provided, this is just scratching the surface.
Parents trying to navigate through this, you are not alone. I hope this video is helpful for you. If your child is struggling with OCD type symptoms, please watch some of my other videos that might relate to what they are going through.
Here’s my question for you? What you think of pandas? Have you or someone you know experienced this before?
Strep and OCD
Treatment for PANDAS
Stopping anxiety when it hits
Imagine getting this voicemail at the time the school bus is supposed to arrive. Anxiety provoking right? I mean I sent my 5-year-old to kindergarten. They sent emails and made comment assuring us that “our child will not get lost”. I didn’t even ask for that assurance, they just offered it freely.
As a therapist who strives to live my life with uncertainty, I initially wasn’t worried. Like I always say, when there is a problem, we’ll solve it.
What do you think? Is there any question in your mind that THIS IS A PROBLEM?
This is what I’ve been talking about all along. When your anxiety hits you and you’re anticipating a problem, you’re guessing a problem, you’re living your life as if there is going to be a problem……IT’S NOT A PROBLEM.
A problem needs to slap you in the face.
You need to not have any doubt that there is a problem to be solved. If you cannot physically see or hear the problem that slapped you in the face.
(b-roll slap face)
Then you’re feeling false anxiety and are reacting to something that isn’t really there. The body needs to learn that you ONLY react to REAL problems.
So back to the story. The bus was supposed to arrive at 3:30….. it didn’t show. The call was given at 3:30 – what was I to do? Problem solving kicks in, the anxiety kicks in.
This is what it’s designed for. What would you do in this moment? When there is a real problem presented in front of us, we have to focus on what we have control over.
I can call the school for an update.
I can get in my car and drive to the school.
There really isn’t much more I can do. Here’s the kicker. The brain automatically plays out situations in our head. These are the what if’s. and guess what? We can treat them the same as ANY OTHER PERCIEVED THREAT. Yes, I do have a real problem presented in front of me, but I practice not reacting to the guesses.
We do this by using a lot of maybe, maybe not statements, even though it can be very scary. My brain went to the worst….
Did she get kidnapped?
Did she get on the wrong bus?
Did she think she could walk home?
Is she wondering around the school?
Did she get hit by a car?
Did she pass out somewhere?
These guesses are NOT THE PROBLEM. My perception is. I can answer each of these with a “maybe” or “possibly” --- because all I know is that they cannot find my daughter.
Man, this is incredibly tough to do, but it’s ALL WE CAN DO. So in short, we focus on what we have control over and leave the rest uncertain.
If I reacted to “did she get kidnapped?” what am I supposed to do? Call the police and report a possibility, just because it came to my head. Drive the neighborhoods looking?
Here is what ended up happening…….10 minutes later I got this voicemail.
(b-roll answering the phone)
I now know a solution…get in the car and pick her up. That’s what we did. When we got to the school, the teacher was sobbing, the school was apologetic, my daughter was well….. only sad because she didn’t get the chance to ride the bus with her brother on the first day.
I mean, you were told to get on the wrong bus, following blindly the directions of others, taken back to the school and picked up by your parents.
Man, kids are resilient. Here’s the deal….What we learn is that giving assurance or reassurance doesn’t work. The school sending an email assuring all the parents that everything is going to be fine is a guess. This is most assurance giving. A complete guess. We need to learn in our life to either
1. Not give assurance unless we know 100% (something like, gravity will continue to hold us to the ground)
2. Leave things uncertain, teaching us and our kids to allow life to be and solve problems when there are problems.
We can only prevent so much and must allow life to just be. So why am I telling you this story?
I’m sharing this story as an example of when we need our anxiety. These moments happen rarely. I mean it. RARELY. And even with real danger anxiety, we still can practice uncertainty.
Treatment for anxiety is uncertainty. Allowing yourself to risk the what ifs. Allowing yourself to live life regardless of the buzz reminding you of dangers. Because you don’t follow those “what if’s” anymore.
So tell me, for the times you feel anxiety, how many of them are REAL? Meaning, How many have actually manifested the way you thought they were going to. You see, we forget about the times it didn’t happen are really good at remembering the times where the catastrophe or “bad” thing did.
Your job when you’re feeling anxiety is to quickly look around you for immediate danger. If you don’t see any, you treat it as a false alarm by using the magic words….”maybe, maybe not.”
Stop living in the future of what ifs. Instead live and enjoy your life NOW.
Real events bring anxiety
How to solve anxiety problems
Nathan Peterson specializes in working with OCD and Anxiety related disorders and has done so for the past 7+ years.