Where did my child go?

I struggle with what to write. I meant to blog so long ago. But life gets in the way. But overtime listening to the families in my village there is a disorder that is hard to define (Jesse got a girl and I want to make her mine…ok bad joke).

PANDAS ( pediatric autoimmune neuropsychiatric disorders associated with streptococcus infection). Lots of words. Most lay people look quizzically at you when u tell them about it. However, for families who struggle or question its existence are so relieved when you know what it is and how to help.

It often seems like an alien abducted the child and replace him/her with someone different although glimpses of the child show up periodically to remind the parent “I am still in here. Just a little confused”.

Strep throat is usually innocuous. It’s treated with a ten day course of the appropriate antibiotic and hopefully it’s gone without any sequela. However,there is growing subset of children, where strep or even some other virus, causes rapid change in the child behavior and mental health. Quick history NIMH in 1990s through Dr Swedo were studying OCD in children. During their research the investigators discovered a subset of children the OCD behavior came on abruptly-overnight if you will. OCD was frequently accompanied by motor/vocal tics, anxiety, immature behavior, temper tantrums, decline in school work and separation anxiety. Most often these children had experience recent strep infection or other viral infection.

As these parents are suddenly struck with radical changes in another wise neurotypical child. They may find themselves asking “where did my child go?”. They often seek the help of their pediatrician or large children’s hospitals. Their worries are often dismissed or its suggest they seek psychological services. Some health providers actually question the existence of PANDAS. However if you are able to take a look into these families, how can a child change so radically? The issues these parents are dealing with are very real- come live in their houses for a week (well no not unless they invite you). Parents typically do not make up these issues. Yet the providers who are willing to listen and actually try and help often don’t take insurance. These families struck by PANDAS at spending thousands to get an answer and help.The best estimate is 1 in 200 children have PANDAS. I am baffled though how a healthcare system can deny it essentially exist when reputable sound studies exist and have been funded NIMH. Maybe I should ask my 8 ball why this is..

Better not tell you now

Cannot predict now

Concentrate and ask again

Don’t count on it

Not a good choice….

So how do we as a village help? Get the word out. Read about it, become educated, and open your mind. There are many diseases classified as “unknown etiology” that still get treated -geographic tongue, narcolepsy, and some dementia. Some of these disorders require treatment and receive it. There are more. So don’t PANDAS patients deserve a closer look and more research?

My own child had 3 bouts of strep and started with facial tic 2016…I’ll keep u posted. The other child has OCD, anxiety, adhd,..who knows.