It seems like every other day is an awareness day for some cause or an other. Some times you wonder do we really need an awareness day for that? Do people not know donuts are a thing? But if there is one thing I know well, all too well actually, it’s that we desperately need awareness for PANDAS and PANS. I’m going to start by telling you our story. If you’ve been visiting Mommy Outside for a while you may have already read our story. But I’m going to tell it to you again. This time it will be slightly different because now, two years since it began, I know more now than I did went I first starting writing about this condition. My daughter is six now. She was four when PANDAS and PANS hit our radar. Here is our story from when it all began.
It happened overnight
I am a mother to a beautiful four year old little girl. She is exceedingly bright, funny and outgoing. She is also healthy. We’ve had a few bumps along the road – reflux, asthma and a little anxiety . She outgrew her reflux. Her asthma is well controlled and also getting better as she gets older (update Molly no longer has asthma). As for the anxiety, well, it turns out that was a symptom of something bigger.
One day, just a few short months ago, everything got turned upside down, literally overnight. Our healthy, happy daughter woke up one day with some pretty extreme OCD symptoms. Our daughter, who has an astounding vocabulary for a four year old, was suddenly struggling to speak. She was overcome with worry about her words not coming out right. She began to speak very slowly, very robotic and she would have to be staring at you or she could not speak at all. Another strange symptom that we noticed right away is that her pupils were suddenly huge, even in a well lit room. To say we were worried is an understatement.
We promptly booked an appointment with her psychologist (who we occasionally see for anxiety issues). We didn’t really come to any conclusions during that session but talked about ways we could help her deal with these compulsions. And then, as suddenly as it started it stopped. She was back to her regular chatty self. This lasted about four days. And then the OCD behavior came back. But it didn’t just come back. This time is was even more pronounced than before. And along with it came a tic. Molly was clearing her throat over and over, to the point where she was hoarse.
In the meantime our psychologist called and asked if we had considered that Molly might have PANDAS. I recalled having read about PANDAS, quite some time ago. It was just something I came across and at the time it had no relevance to me. I hit the internet and started to learn more. It didn’t take me long to realize this could very well be what we are dealing with. During this time, when my husband and I were trying to learn as much as we could about this condition, Molly once again showed considerable improvement and then her symptoms returned with a vengeance. By this time her compulsions were all consuming, her tic was almost constant and my normally happy little girl was having fits of rage and violently lashing out at me.
What is PANDAS and PANS?
Before I go on with our story I want to tell you a little about PANDAS and PANS. Unless you have a child or know a child that has been affected there is a good chance you may have never even heard about either of these conditions. Or if you have it’s more likely that you have heard about PANDAS and not PANS, and this is something that I am working really hard to change – that when we talk about PANDAS we talk about PANS. This is important. Keep reading to find out more.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) is a condition that effects certain children after they have had a step infection. It is not the strep itself that is causing the problems but the antibodies produced to fight the infection. There is no test for PANDAS, but diagnosis is made on clinical presentation.
Guidelines for diagnosing PANDAS include:
- Presence of OCD and/or tics, particularly multiple,complex or unusual tics
- Age Requirement (Symptoms of the disorder first become evident between 3 years of age and puberty)
- Acute onset and episodic (relapsing-remitting) course
- Association with Group A Streptococcal (GAS) infection
- Association with Neurological Abnormalities
For a patient to be diagnosed with PANS, she or he must have the following:
- An abrupt, acute, dramatic onset of obsessive-compulsive disorder or severely restricted food intake
- Concurrent presence of additional neuropsychiatric symptoms with similarly severe and acute onset from at least 2 of the following categories:
· Emotional Lability and/or Depression
· Irritability, Aggression, and/or Severe Oppositional Behaviors
· Behavioral (Developmental) Regression
· Sudden Deterioration in School Performance
· Motor or Sensory Abnormalities
· Somatic Signs and Symptoms, including Sleep Disturbances, Enuresis, or Urinary Frequency
- Symptoms are not better explained by a known neurologic or medical disorder
- Age requirement – PANS has no age limitation, but symptoms typically begin during the grade-school years
Whether it’s PANDAS or PANS it is a dramatic and often debilitating condition. And to make things so much worse, it is not simple to diagnose (or treat which we will get into). There is no simple blood test to diagnose PANDAS or PANS. If you have a child that currently has an active case of strep and a swab and/or strep titer (blood test that measures the level of strep antibodies in the body) happen to be positive then that MAY lead doctors in the right direction. However, by the time the symptoms are in full swing these tests may, and often do, come back showing no current strep infection.
Our daughter fit nearly all of the diagnostic criteria. And her symptoms began immediately following a suspected strep infection. What just about every parent of a child with PANDAS or PANS will tell you is their child changed dramatically overnight. One day they were healthy and happy the next day they were overcome with OCD and/or extreme anxiety. It is terrifying.
Hitting brick walls
On with our story. Molly’s condition had gotten very extreme. By the way, while all this was happening she had a throat infection. It may or may not have been strep BUT just before her initial onset of symptoms weeks before she was treated for a suspected step infection. Our paediatrician was on holidays. So we packed Molly up and took her to the ER at our local hospital. When she was first admitted her symptoms were so severe they had to give her Valium to try and bring her stress level down. We ended up staying in the hospital for a week while they ran various tests on her. She had a CT scan, an EEG, an MRI and long list of blood tests. Every single test came back negative. My husband and I were already pretty sure we were dealing with PANDAS (we didn’t know about PANS yet) but because of the severity of her symptoms it would have been irresponsible of us not to allow for these tests to rule out any possible life threatening or other serious conditions.
We mentioned to more than one doctor that our psychologist had brought up the possibility of PANDAS. The first paediatrician that cared for us didn’t dismiss it entirely – she ordered a throat culture and the titer blood test to look for strep. I don’t know if she would have pursued PANDAS or not. Unfortunately, her week doing rounds in the paediatric unit was over and we were assigned a new doctor. This doctor was most definitely not open to the possibility of PANDAS. When my husband mentioned it to him his response was “The research on PANDAS is 10 years old and outdated”. End of story. When I spoke to the psychiatrist (who, it’s important to note, does not deal with very young kids) he told me he didn’t think it was PANDAS. When I asked him why he simply said “Because PANDAS is rare”. End of story. My jaw may have dropped to the floor at this point. You see, every single doctor and nurse who was caring for our daughter admitted to never seeing a child so young presenting with such severe symptoms – so you might say she was a rare case – yet they refused to consider the possibility that she may have a condition that is rare (although it is arguably not a rare condition at all).
This is one of the biggest problems facing children with PANDAS/PANS. Most doctors have never even heard of the condition and the ones that have often dismiss it like it’s a fairy tale. Once in a while you might find a doctor that is willing to think about it but the minute you rule out evidence of a current strep infection that consideration goes out the door. Getting your child diagnosed and treated for PANDAS/PANS can be extremely difficult or even impossible if you don’t have the resources to seek out your own help.
And seek out our own help is exactly what we had to do. A week after showing up at the ER we were discharged from the hospital. We had no diagnosis. We had no follow up plan. What we did have was the offer of a prescription to put our four year old on psychotropic medication. Prozac to be specific. We declined that offer. They did their best to push it on us but we made it very clear that we would not even consider it until we consulted with a psychiatrist that had experience treating preschool age children. We have one such doctor in our health district. It is a year long waiting list to see her. So we went home, with nothing. And promptly set up a phone consultation with a doctor in another province that I had read about while researching all I could about PANDAS. And finally we started to get somewhere.
This new doctor has experience with PANDAS and PANS. She has treated children with the condition and understands how life altering and devastating it can be for the kids and their families. We talked for an hour – about Molly’s symptoms, about all of the tests we had just done coming back negative and about what to do next. We started treating Molly immediately. And she started to improve immediately. It’s been almost a month since we walked into the hospital and the change in our daughter is incredible. Her compulsions are extremely minor now (almost gone entirely), her tic has faded considerably (tics may be the hardest symptom to to treat), she no longer has fits of rage or lashes out at me. She is back at daycare. She has started dance lessons. She is healthy and happy.
Treatment for PANDAS/PANS varies depending on several factors. It can range from prophylactic use of antibiotics and medication and supplements to support the immune system and reduce inflammation (this combination has proven to be very effective for Molly) to more invasive procedures like IVG or plasmapheresis. Many kids also benefit (usually in tandem to medical treatment) from CBT (cognitive behaviour therapy) or ERP (exposure and response prevention). Some children recover quickly from PANDAS/PANS, some can take weeks, months even years to recover. Unfortunately, this can be (and often is) a reoccurring condition and subsequent exposure to strep, or other infections, can put these kids right back where they started.
So, our daughter is doing amazing right now. She is back to her old self. And we know that this might not be over for her, for us. But at least we now know what we are dealing with and have found a doctor that is willing and able to help us. Our goal now, in addition to keeping our own child healthy, is to advocate for all the other kids who are not getting that help. All those kids who are being sent home with prescriptions for Prozac and never truly getting better. I want to be clear that these medications have their place and can be of great benefit to a lot of people, including kids with PANDAS or PANS. But when you reach for them as the first line of defence, without understanding what you are actually treating, they can be quite dangerous (children with PANS or PANDAS need to start at a much lower dose than other children).
I mentioned earlier that our daughter has had issues with anxiety in the past and that it tied into her condition. After we found out more about PANDAS and PANS we did a lot of looking back at earlier, smaller “anxiety attacks” that she experienced prior to this major episode. Upon reflection we realized that we could tie just about every single one of those attacks to an illness. So, it’s likely that Molly experienced PANDAS/PANS symptoms previously and we didn’t realize it. It is the nature of this condition that each episode is more severe than the last so all of these pieces have really come together for us.
It’s been just over two years since I first wrote our PANDAS/PANS story. Molly is now six and in grade one. And she is doing extremely well. Over the past two years she has had a couple of relatively minor PANS flare ups but now that we know what we are dealing with we can get on top of it and help her recover much quicker. We also have a wonder paediatrician that is not only supportive but makes a point of keeping up to date on the latest PANDAS/PANS information.
I urge anyone who suspects they or their child might have strep to go get a simple swab and get treated if it’s positive. PANDAS and PANS are, by definition, paediatric conditions so adults are not susceptible to it and chances are your child will not get it BUT when your kids show up at daycare or school with an active strep infection they put my daughter, and thousands of kids like her, at risk of having a serious relapse. Its easy to treat, and strep carries enough risk of other complications that you should be treating it anyways.
If you have a young child who has very suddenly developed more than one of the following symptoms, especially if that child recently had a strep or other bacterial or viral infection, then you may want to look into the possibility of PANDAS/PANS:
- Severe anxiety/separation anxiety
- Personality changes
- Tics or abnormal movements
- Aggressive behaviour
- Deterioration of fine motor skills and/or learning abilities
- Restrictive eating and/or anorexia
- Developmental and age regression
Most doctors consider this condition rare. That is very debatable. It is estimated that there are 162,000 cases in the US alone. Because it is largely misunderstood and under diagnosed (or misdiagnosed) in the medical community it is impossible to say how many kids around the world actually have PANDAS or PANS. Clearly more research (which requires more funding) needs to be done so more doctors take it seriously and so more kids get the help they need. This condition is treatable and the earlier it is diagnosed and treated the easier it is to recover from.
If you would like to learn more about PANDAS/PANS I encourage you to visit the PANDAS Network. It is a great resource for anyone needing information on the condition and it has a great list of resources to try and get you the help you may need. And please feel free to reach out to me if you have any questions. I am not a health professional but I will do my best to point you in the right direction.