No, My Child Does Not Have PANDAS, He Has a Mental Illness
Well-intentioned people often suggest that my child with mental illness isn’t actually mentally ill. They insist he has an underlying medical condition. Lately, it's pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS). To those who interject these suggestions without invitation into a conversation about mental illness, know it can be more harmful than you think.
Note: I am not an "expert", nor am I writing this in a professional capacity. I am a parent on my own journey, which is where this blog comes from.
For one, you're implying that parents like me are uninformed (at best) or medically neglectful (at worst). You're perpetuating a culture that leads to people denying legitimate medical disorders and, most dangerous to my child, you are further stigmatizing mental illness.
What Is PANDAS?
PANDAS is said to occur when a child’s brain becomes inflamed after a bout of strep throat. The child exhibits sudden and dramatic mood swings, obsessive-compulsive behaviors, and other signs of mental illness. According to the article linked at the bottom, one in 200 children has PANDAS. That statistic originally comes from the PANDAS Network, however, where you can go read and make determinations of your own.
When examining the peer-reviewed research on the subject, however, researchers have not yet found evidence that PANDAS exists. Research does show evidence of a sudden onset of neuropsychiatric symptoms in some children. They cannot, however, demonstrate a relationship to strep throat, and they cannot show that children who meet criteria for PANDAS benefit from the recommended treatment.1
Why My Child Does Not Have PANDAS
My child has exhibited symptoms of mental illness since around age three. He first caught strep much later. If PANDAS appears abruptly after strep, then my son is already disqualified. In addition, he does not exhibit one of PANDAS's hallmark symptoms: obsessive-compulsive behaviors.
Some PANDAS supporters say it can be triggered by other infections or by allergens or chemicals. A simple Googling of the research will show little support for this. To me, this claim demonstrates the natural parental desire to make a child’s mental illness fit into a “curable” medical model. I understand. Mental illness feels scary, especially in children. Even accepting the statistic that one in 200 children have PANDAS, though, a child is still more likely to have a mental health issue. One in five children has, or will have, a mental illness.2
My child has been to medical, neuropsychological, and psychiatric doctors. He has been hospitalized and partially hospitalized. He has had his blood analyzed. If something other than mental illness was at play, we’d know. To keep suggesting PANDAS (or "vaccine injury" or allergy to red dye number five, etc.) is to imply that we have not considered every angle. I know what’s happening with my child. If I didn’t, I'd request help, and then you could suggest your theories. Right now, though, my son doesn’t need theories. He needs support.
PANDAS and Stigma: I Will Not Delegitimize Mental Illness
Medical conditions exist that are denied every day. People with food allergies are thought to be faking it or to have overprotective parents. People with Crohn's disease are told it's psychosomatic. I will not continue to make those and other conditions sound illegitimate by saying that my child (with no signs or symptoms of these disorders) must have them, too, simply because I’d prefer he did.
I don’t want my son to deal with this, but I won’t deny his mental illness, either. No one should. He shouldn’t have to grow up thinking his disorder is “wrong” or that he could’ve prevented it somehow. I don’t want him thinking he has to be “cured;” that something he was born with makes him deficient. Neither do I want him harmed by some endless series of unsupported medical treatments in pursuit of an illness other people would prefer he had.
My son does not have PANDAS or anything similar. My son has a mental illness.
That should not be controversial.
1 Science Based Medicine has a nice summary
Update: Please keep in mind that you do need to do your own research around everything. I've updated the blog to make that clearer.
David, M. (2017, August 14). No, My Child Does Not Have PANDAS, He Has a Mental Illness, HealthyPlace. Retrieved on 2019, June 15 from https://www.healthyplace.com/blogs/parentingchildwithmentalillness/2017/08/no-my-child-does-not-have-pandas
Author: Melissa David
Her is the press release from NIMH with the link to the recently-developed guidelines, which were published in the Journal of Child and Adolescent Psychopharmacology. https://www.nimh.nih.gov/news/science-news/2017/guidelines-published-for-treating-pans-pandas.shtml. Here is the link to work by Dr. Agalliu (Coumbia University) and Dr. Cleary (University of Minnesota) identifying how an infection in the nose/throat can trigger the immune system allows antibodies to breach the blood-brain barrier and energy the brain, published in the Peer-Reviewed Journal of Clinical Investigation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701547/. and here is an article by Dr. Cunningham (University of Oklahoma) showing how the antibodies interact with brain tissue to change the levels of Cam Kinase II (which becomes dopamine) in the brain once they enter and also showing that kids with PANDAS react differently than kids with other forms of OCD or with tic disorders. It is published in the journal of Neuroimmunology http://www.jni-journal.com/article/S0165-5728(06)00241-4/fulltext. These are not "tenuous", though the reference the blog author used to back up her claims that "researchers have not yet found evidence that PANDAS exists" is certainly tenuous at best (Science Based Medicine ). I am sorry it took so Long for me to respond to this request, as I must have missed it the first time through. However, if you page back through comments you will see that I supplied several high-quality peer-reviewed publications earlier.
When, in our desperation, we did more research, we saw the correlation between symptoms and illness. We started taking him to the doctor when he was acting anxious and upset but didn't complain of any physical symptom. And guess what? He had either strep or an ear/upper respiratory infection EVERY SINGLE TIME. We've since gone to a PANDAS specialist and found that he has high strep titers, mycoplasma pneumonia, HHV6, lyme/bartonella. We also found that he has a primary immunodeficiency, CVID. He has finally been approved for ivig and will start that therapy in a few weeks. We have seen him improve greatly while infections are being treated in the past and are hopeful he can finally turn a corner.
If my son had continued down the path he was on and we continued to believe we were only dealing with a mental illness, most likely he would have ended up in a longterm psychiatric facility. I am thankful that I kept looking for answers, and we are now on the right path in his healing. And I will continue to suggest PANDAS/PANS to other parents whose kids are struggling. I wish someone had been able to suggest it to me all those years ago. How much time we could have saved...how much misery we could have avoided. And maybe you can try to have some compassion for parents like me who have "lost" their kid to common, every day illnesses that any school aged encounters.
Thank you for being respectful. Best wishes to you and your child. I deeply hope that all kids find happiness, regardless of how they get there.
"no evidence" "a simple Google search" If you really intended (as you sound like you did from these comments) to just vent your frustration of this part of it, it's unfortunate you chose to do so in such a condescending way.
And guess what, Melissa? This child whose doctors had written him off as simply being mentally ill and needing some SSRIs, turns out, definitively has had the DNA of borrelia spirochetes, bartonella and babesia in his blood!! There is unequivocal proof that my child's body is wracked with illness, yet the mainstream medical community was willing to simply send him down the road to the psychiatrist (which, had I blindly listened, could have, in fact, made his mental illness symptoms worse, which often then confirms to the psychiatrist that the child is mentally ill but just needs a different medication!!!)
Instead, I got my son to a Lyme Literate Doctor, and his so-called mental illness is greatly under control now (he is probably about 75% improved after 3 months of treatment).
Not only do I resent the tone you take in asserting that parents who seek a possible medical cure for their kid's mental illness is somehow shopping for a cure to an incurable problem, but I truly pity your child, that you would align and resign yourself so blindly to the mainstream medical model. My child is now on 4 different antibiotics (which is not something I am happy about, but these germs are incredibly stealth and virile. They require major artillery to kill them off). We never saw a tick, nor did we ever isolate a time when he might have been bitten by one. But his symptoms (profound anxiety, irritability and eventually RAGE) were, as I learned, highly correlated with the bacteria that have been scientifically proven to be infesting his blood. I am incredibly proud of how hard I have fought to ensure my son got the proper care he needed!! And cannot imagine where he would be right now if all i did was accept that my son has a mental illness.
I regret that he had to suffer with it for so many years while I muddled through thinking the mainsteam medical world could help me with this. He suffered needlessly, and for this, I am sorry. But I didn't know what I didn't know. Until I did.
And I invite you to consider that there may be a WHOLE LOT you don't know that you don't know and that these blind spots could be inadvertently harming your child!
What if you opened your mind back up? (I can already tell by the fact that you only mentioned PANDAS and not PANS, that you have not learned NEARLY enough about this set of illnesses). What if you had new blood work sent off to the Igenex and Galaxy labs, to test for the DNA of these vector borne diseases... And what if, AFTER believing your son was ALWAYS going to live with his mental illness symptoms and diagnosis, you discovered that, for example, what was ACTUALLY causing his symptoms was a chronic blood infection known as babesia?!?! What if, AFTER this discovery, you could prove your OWN BLOG ARTICLE WRONG, by treating this illness, and that after all this time, he would no longer need the psychotropic drugs?! What if, Melissa?! Would you be willing to set aside your absolutism, to explore a POSSIBILITY that your child's life could be truly improved-- through HEALING?!
I am a mental health clinician myself. The idea that mental illness symptoms could be CAUSED by germs was simply not in my worldview. There was no room for it. And that's why my son spent so long without proper treatment!! His first symptoms arose at age 3 as well, just ike your child! He didn't get proper treatment until he was 16. I pray you might reopen to the possibility that your son's illness COULD BE CAUSED by germs. I PROMISE you have NOT done the proper bloodwork to rule this out yet. And if you did, at least THEN you'd be able to say, without a shred of nagging doubt, that you truly have done everything for your son that you possibly could, to treat him effectively. Rule it out or rule it in. But rejecting it out of hand prior to a thorough and effective investigation is simply not good science.
Side note: I do have a word limit, so I could not add an entire comprehensive history of PAN/PANDAS. I presume people can look up more about it if they wish as I am just "consumer of the system" and not a medical professional.
I hope you'll read previous articles to see what journey we have taken. I hope you'll continue to read so that any preconceived notions of my ability to accept multiple modalities can be determined based off more than one article in which I expressed my personal feelings.
Best wishes to you and yours, Liza.
Thank you for being respectful in your follow up comment, Liza.
But your assumption that we are saying mental illness doesn't exist is preposterous. It simply is YOUR INVENTION. I've never heard it said in the thousands of interactions I've had with PANDAS parents. If someone has said that specifically to you, you should add this quote to the article. It would make your point more saliently. And even if someone did say that to you, that would be ONE PERSON'S opinion, and certainly would not prove your absurd insinuation that ALL PANS/PANDAS parents believe that it doesn't exist!!
I made another comment which you apparently haven't accepted (at least I can't find it), where I suggested that the most useful edit you could make to this article is to take out the paragraph that refers to that profoundly inaccurate and outdated article in so-called "Science Based Medicine." That paragraph perpetuates the MYTH (referring back to the picture at the top of your post) that there is no legitimate research linking strep to mental illness and claiming that treatments are not proven to have worked. I'm sure you havent probably had the time yet, to read the many peer reviewed articles posted in the comments, but there absolutely IS legitimate, peer reviewed literature doing exactly what that paragraph claims has not been done. Change THAT paragraph because it is patently false.
Take the valuable opportunity that your blog could be, and educate potential readers (many of whom could have children who WOULD DEFINITIVELY RESPOND WELL TO ANTIBIOTICS, IVIG OR PLASMA if only their parents knew enough about it to seek this treatment) about the distinct differemce between what is known as PANDAS/PANS and your child's situation. There is room for both to exist.
Why must the fact that you believe your son has organically derived mental illness NEGATE THE EXISTENCE OF PANDAS/PANS? Why must you spend time in your position as the author of this blog, being devisive and argumentative rather than using your position to expand everyone's understanding of all of it? Contempt prior to investigation is a sign of abject ignorance and utter negativity.
Clearly you haven't read the research done over the last few years. I beg you to become better informed and then to change this article, to give a more fair description of the very real syndrome known as PANS/PANDAS. Not to do so merely leaves you looking like you'd rather prove yourself right than potentially admit a shortcoming, learn, grpw, and in the process, make a real difference!! Isn't that better modeling than digging your heels in even in the face of obvious evidence to the contrrary!?
And one last request: Please, if you haven't already done so, PLEASE inform your son of the intimate details you broadcast out to the public, about your son's private life. Make sure he actually READS WHAT YOU'VE WRITTEN, and that he understands everything you've shared. Of course I still don't think that it is ethical to continue to do it, since he is clearly much too young to be able to maturely consent to have this confidentiality waived. But at least he will be aware of the incredibly personal details of his life that you have exposed to anyone and everyone. And at some point in the future, he might grow into a more mature person who wpuld assert his right to privacy and no longer allow you to do it.
The stigma about mental illness is still there and while you may not like that, as I cettainly do not, I'm really not convinced that this blog will be useful in your son's life, at removing the stigma against him. Unfortunately there will always be people who Will harshly judge him and treat him differently because he has been instititionalized. I just think he has the right to decide for himself, when he is old enough to make this decision responsibly, who and when he will share the information.
Unless a licensed mental health professional disregards the International OCD Foundation as a NOT medically sound source? Then of course you have the National Institute of Mental Health: https://www.nimh.nih.gov/health/publications/pandas/index.shtml That could be another. But if these elite mental health practitoners aren't into either of those, how about you tell us what's considered "medically sound"?
So naive to believe an internet blog as a reputable source of information to fail to seek treatment for their loved ones. We need to work together, not unravel advancements.
Overview of Treatment of Pediatric Acute-Onset
Susan E. Swedo, MD,1 Jennifer Frankovich, MD, MS,2,3 and Tanya K. Murphy, MD, MS4
Clinical Management of Pediatric
Acute-Onset Neuropsychiatric Syndrome:
Part III—Treatment and Prevention of Infections
Michael S. Cooperstock, MD, MPH,1 Susan E. Swedo, MD,2
Mark S. Pasternack, MD,3 and Tanya K. Murphy, MD4
; for the PANS PANDAS Consortium
Clinical Management of Pediatric Acute-Onset
Part II—Use of Immunomodulatory Therapies
Jennifer Frankovich, MD, MS,1,2 Susan Swedo, MD,3 Tanya Murphy, MD, MS,4 Russell C. Dale, MD,5
Dritan Agalliu, PhD,6 Kyle Williams, MD, PhD,7 Michael Daines, MD,8 Mady Hornig, MD, MA,9
Harry Chugani, MD,10 Terence Sanger, MD, PhD,11 Eyal Muscal, MD, MS,12 Mark Pasternack, MD,13
Michael Cooperstock, MD, MPH,14 Hayley Gans, MD,15 Yujuan Zhang, MD,16 Madeleine Cunningham, PhD,17
Gail Bernstein, MD,18 Reuven Bromberg, MD,19 Theresa Willett, MD, PhD,1 Kayla Brown, BA,1,2
Bahare Farhadian, MSN, RN, FNP-C,1 Kiki Chang, MD,1,20 Daniel Geller, MD,21
Joseph Hernandez, MD, PhD,1,2 Janell Sherr, MD,1,2 Richard Shaw, MD,20 Elizabeth Latimer, MD,22
James Leckman, MD, PhD,23 and Margo Thienemann, MD1,20; PANS/PANDAS Consortium