Thursday, March 6, 2014


A reader commented on my last update on Emery. She asked if I had ever heard of PANDAS. The answer is yes. Both Emery's pediatrician and therapist recently talked to us about this condition. I had previously stumbled on to some information about it as well. Based on my research, it would appear likely that Emery may have PANDAS. We will be monitoring her closely for any more signs.

The National Institute of Mental Health (NIMH) describes PANDAS as follows:

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette Syndrome, and in whom symptoms worsen following strep infections such as "Strep throat" and Scarlet Fever.

The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep throat infection.

There is no test for this condition. It is diagnosed based on observation of symptoms. The NIMH describes an episode as follows:

Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep throat infection the tics or OCD return just as suddenly and dramatically as they did previously.

I am praying she continues to improve and her symptoms do not persist for months. This all began aound the end of December, so we are at the beginning of our third month. She did have one normal week in between the ear fluid issue and the strep throat. She is acting fairly normal at home as long as you do not make her do anything in the realm of a routine. I am slowly adjusting her back into her routine despite her obvious opposition to it. She is one stubborn little girl. Her therapist believes she has gone so long with not having to do what is expected of her, that she just wants it to stay that way. We think it is a combination of not quite feeling right yet and wanting to continue to get her own way. So she is ever so slowly starting to come around. She actually appears to be herself while at home doing what she wants to do. Try to make her to do something associated with a normal routine and she reverts to hitting herself, but not very hard. She will hold off doing what she is asked to do for a long time. The key is to hold out longer than her. Like I said, she is quite stubborn, so a lot of patience is required! This has been a long 2 months. We will get there. In Emery's time, but with some pushing along the way.

So, just to remain positive and maintain a sense of humor, I am going try to remember at least one event during my week that made me laugh.

My weekly dose of amusement: Receiving unsolicited parenting advice from a non-parent. Always good for a few laughs!



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