A little while ago, in a PANDAS support group, I asked parents, "How did you figure out your child has PANDAS?" Was it diagnosed by your pedicatrician, another parent, you?
This was an informal "study" with about the same small number of partipants as the most recently published Lyme study. The sad fact is that about half these parents and countless others have had to figure out the diagnosis for themselves. Before finally receiving the PANDAS diagnosis, many of our children have been misdiagnosed and placed on psychiatric medications which can, in fact, exacerbate PANDAS symptoms.
So, this brings us to the next question: at what point do parents diagnose their own child? I think back to when my son first got sick. A good friend of mine told me about PANDAS. It had to do with strep and OCD. Her son had it, with classical OCD symptoms. This did not ring any bells for me. My daughter had strep but my son hadn't for a long time. He didn't have OCD (or so I thought.) He certainly didn't have to flush the toilet fifteen hundred times or line up his pencils like an old-fashioned army when he did his homework.
I googled PANDAS at the time, but not a lot, because I was busy researching bipolar disorder, which I suspected might be the cause of my son's issues. There were two schools of thought regarding bipolar disorder: 1. Children CAN'T get it and 2. Children CAN have it. What I saw in my child was this Jeckyll and Hyde behavior: one moment, happy, the next, irritable, the next, a complete rage or temper tantrum, followed by remorse or depression.
Our doctors said, "mood disorder" only because they couldn't figure out what was going on. The proposed new diagnosis of disruptive temper disregulation disorder, was being considered. According to my husband, the psychiatrist asked if Lyme Disease could be an issue, but the tests for Lyme Disease that many pediatricians in NY offer are inadequate. One band showed up, but the diagnosis was discarded. My son did not have Lyme Disease according to CDC guidelines. And we parents did not yet know better.
Just this past week, in one of the online PANDAS support groups, I read about pediatricians telling parents that they don't believe in PANDAS. I read about another pedicatrician refusing to work with a parent after the parent consulted with a PANDAS expert. And I'm constantly reminding myself about Boston Children's Hospital, whose claims of "Until Every Child is Well," discriminates against children with PANDAS (and Lyme.) BCH has told many parents that they neither believe in nor treat PANDAS. Many stories of parents denied treatment for PANDAS from BCH show up on these private support groups.
If one of our "greatest" institutions don't recognize PANDAS, how are we to deal with family members who question the diagnosis? As for me, when I realized that my son's intrusive thoughts (of walking in front of a moving vehicle) were a form of OCD and once I realized that his crazy impulses to stick his fingers into a bowl of cole slaw were ADHD-like, I began exploring PANDAS further. I was able to locate some nearby parents and hear their stories. As my son's angst built over the remainder of the summer, as separation anxiety came into play, I made appointments with some of the PANDAS experts to whom I'd been refered.
"You think you know more than the doctors?" I was asked by family who heard what I was doing (friends thought it, I'm sure, but kept silent.) "What makes you think you can diagnose your son?"
Well, yes, I do. I know my child better than anybody else on this planet. Since he became sick, I have read, researched and spoken, either in person, telephone or over computer, with hundreds of parents in similar situations.
Finding fellow PANDAS and Lyme parents has been a blessing for me. I have learned more from these parents than I have from any book or doctor. Collectively, these parents have experienced everything--from children trashing TV sets in the midst of a rage, to children prefering strange, adult foods to regular, kid-foods, to kids urinating on floors, to kids being zapped by police, to homeschooling or homebound instruction. To psychiatric hospitals and jails. All for a medical condition.
So, yeah. I know more than the doctors, sometimes. And knowing more has led me to find better medical care for my child. No doctor knows everything. No PANDAS or Lyme Literate doctor, no matter how well-read or scientific, has all the answers. Some of the experts have differing opinions; it is both the option and the duty of the parent to try to figure out what is best for the child.
The one thing that neither the doctors nor I know is whether we can permanently halt the autoimmune part of PANDAS, and whether the Lyme spirochetes having a party in my child's body will ever be eradicated. But one thing I know for sure: this time in our lives is part of history. We may at the the forefront of learning more about PANDAS and Lyme, we may be some of the first parents to actively pursue medical treatment (as a disorganized, yet unified group,) but each day we do so, we are writing history.
Note: 16 year-old Elizabeth Wray remains at Boston Children's Hospital and her famiy remains under a gag order. The Wrays took their daughter to BCH for OCD-induced anorexia (which my own son has suffered from,) after working with two different doctors who diagnosed PANDAS and Lyme (both of which my son has.) They went to the "best" hospital only to be told that BCH doesn't believe their child has PANDAS and that the hospital doesn't believe in PANDAS. When they tried to get their child transferred to Mass General, another Harvard affiliate and the one hospital in the area that DOES treat PANDAS, BCH called CPS and had custody of Elizabeth removed. BCH then took her off antibiotics and the gluten-free, dairy-free diet that was helping. When I met her grandfather, I heard that she was no longer walking, and that the head nurse would let her soil her sheets rather than bring her to the bathroom. Her parents were caring for her 24 hours a day and trying to prevent her from succumbing to the PANDAS. The hospital was also taking her food away because she was eating too slowly; they were fine with her drinking Ensure.
Yeah, we know more than some of these doctors. Don't you agree?