After voraciously reading a few articles on PANDAS, my mind raced back ten years, when one of my older children had been diagnosed with OCD. I remember reading some preliminary research on the connection between childhood OCD and strep. Ten years ago I went into my doctors office, and asked questions about strep and my child that was receiving psychiatric care. My GP that told me that there was new research being done in this area, but it was so new that we would not know what to do about it anyway. We should proceed according to conventional medical therapies. SSRI’s and cognitive behavioural therapy.
The clearest explanation of PANDAS came to me in the understanding of Rheumatic Fever. Rheumatic Fever is also a disease that may result from contracting he streptococcus bacteria. Strep affects the of the heart and causes damage. In the event of a person having Rheumatic Fever, they are predisposed to further damage should they encounter strep again. It is similar with PANDAS, but the strep affects the tissue of the basal ganglia. The primary difference in treatment revolves around the fact that, repeated exposure to strep, or without treatment Rheumatic Fever could potentially be life threatening; PANDAS threatens mental health.
There is an excellent article here. This article defines what PANDAS is in simple terms, and describes symptoms, diagnosis and prognosis. It provides excellent hallmarks for recognition. Children outgrow the predisposition to PANDAS by about the age of ten or twelve.
Dealing with PANDAS meant that first the child would need to be on an antibiotic to deal with the strep. But the effects of the illness can last for weeks or months. For Rosebud, the crisis period, completely non communicative, OCD and tic symptoms in a severe form, screaming and not eating, lasted about three weeks. At the end of that time, over the course of about another three to four weeks, suddenly, she gradually started eating, began communicating in small windows, which got larger over the course of that month, only screamed during the “non communicative” periods (it was like she checked in and checked out periodically, in terms of her ability to interact with others), and slowly normalized.
As she got better, she described a “throat thing” as going away. “That throat thing isn’t there any more, mama, I think I can eat when it isn’t there.” Putting the pieces together, we think she likely had some kind of throat tic, but could not communicate that to us at the time. She would touch her neck, and ask a lot of questions about whether it would “come back.” Mood lability ceased, and she seemed to be herself, unless she became stressed, and for a few months afterwards, would regress into a retreat, although tic and OCD symptoms ended altogether.
But for months and months afterwards, she had severe separation anxiety, in fact, it has been two years and I would say that she still has separation anxiety to some degree, in some situations. She has not contracted strep since, but if she does, she will get PANDAS again. She is predisposed to it. That’s kinda scary. The extended separation anxiety that follows a PANDAS episode is another explicit hallmark of PANDAS. It stands to reason, for a child to go through something as traumatic as a “brain blip” like this, brought on suddenly by illness…to experience fear of separation. It was like psychologically she was taken from us for those few weeks. This would be traumatic to any child.
So, ultimately, what we discovered was that we needed to just ride it out. We could medicate her for OCD, however, by the time SSRI’s (the most common way of dealing with childhood OCD) start working, the crisis would likely be over. We were told that, essentially, there was nothing we could do in the moment. Which isn’t entirely true, as there are nutritional and supplement ways of supporting the healing of the brain. Which I’ll post on shortly. But we did need to develop an action plan.
In a nutshell.
We need to minimize the risk of her getting strep. We can do this by supporting her immune system, quarantining our family when an outbreak of strep is evident in our community. We need to be conscientious about good hygiene, particularly when we are in public places. If we knew that she had been exposed to strep, we could put her on an antibiotic to prevent her contracting it.
Knowing that she will outgrow this is comforting. She is almost six and so far, we have not had another episode. But she has four to six more years of possibly contracting strep before she does outgrow it.
It isn’t that hard, and now, knowing what we could expect if she has another episode has given us a reference point. It has not affected our life that much.
I guess the hardest thing for me is that she changed. Her personality shifted. She was confident and social. She enjoyed meeting new kids and playing with them. She expressed herself clearly and charitably. Now, she retreats easily. And when she does… she becomes quiet, unfriendly, timid, unable to communicate effectively. It’s hard for her too. She gets so excited if she knows friends are coming over, or we are doing something social. But as soon as we are in that setting, she usually retreats to my lap. And she is sad about it.
Fortunately she has Buttercup who she has never not know. And most of the time, she can play with her with the normal social graces of a five year old.
That is hard for me to watch. Occasionally, she feels comfortable enough to step out of her retreat, but it takes a really long time. But there is hope in that. At first I felt compelled to apologize and explain her behaviour, but that becomes silly, sometimes. It doesn’t change anything. So I jokingly tell people she’s our little snob. Or she’s shy… or she “takes a long time to warm up to people” although none of these things are actually true. But it is how it appears.
I have to know somebody pretty well before I take the time to explain. We’ve accepted this change in here. And we just have to keep supporting her little insecurities and quirks. It is our job to socialize our children. It is just taking longer for baby Rosebud. And that’s okay.