advertisement

No, My Child Does Not Have PANDAS, He Has a Mental Illness

August 14, 2017 Melissa David

PANDAS symptoms resemble signs of some mental illnesses. People sometimes insist my son has PANDAS, but that only stigmatizes a mentally ill child. Here's why.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.

Resources

1 Science Based Medicine has a nice summary

2 National Institute of Mental Health

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.

 

 

Tags: PANDAS

APA Reference
David, M. (2017, August 14). No, My Child Does Not Have PANDAS, He Has a Mental Illness, HealthyPlace. Retrieved on 2022, December 8 from https://www.healthyplace.com/blogs/parentingchildwithmentalillness/2017/08/no-my-child-does-not-have-pandas



Author: Melissa David

Melissa David is a mother based out of Minnesota. She has two young children, one of whom struggles with mental illness.The support and wisdom of other parents proved invaluable to her in raising both her children; and so she hopes to pay it forward to other parents via Life With Bob. You can find her on Facebook and Twitter.

Jessica Gavin
August, 14 2017 at 6:45 am

In your Google search, did you happen to see the research by Dritan In Columbia that showed in a mouse model that repeated exposure to strep caused psych symptoms? It was in 2015 and published in JCI. Because of that research the NIMH awarded him a grant to continue his PANDAS study. I don't know that means that "no research" shows that strep can cause psych symptoms.

Heather Forsyth, PsyD, LP
August, 14 2017 at 6:28 am

Melissa, you are also lacking peer reviewed journal references. Please read these to be an informed clinician:
Overview of Treatment of Pediatric Acute-Onset
Neuropsychiatric Syndrome
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
Neuropsychiatric Syndrome:
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

In reply to by Anonymous (not verified)

August, 14 2017 at 8:46 am

Thanks, Heather. I'm not sure why some of my messages are not getting through, so forgive the slowness of the acceptance/approval process on the comment responses.

J Jones
August, 14 2017 at 9:40 am

Hi Melissa, I am here in Minnesota. We have great practitioners and researchers working diligently to help solve the puzzle. While your child may not be in the same boat as many others does not make our boat less real. Our children clearly have a immune regulated Neuro-psych disorder. I am upset that you would make our children's disorder so disregardable. You may have your mental illness diagnosis if that is what you have. Our children actually have something quite different. My son responded drastically when started on antibiotics and Advil... He went from completely non-functioning to being able to tell us something was clearly going wrong in his brain and he needed us to keep helping him to fight it. You are welcome to come and hear our story anytime you would like to see how real this is.

K Concerned Parent
August, 14 2017 at 6:23 am

Here's the thing PANS is real and a real dx, I know someone who HAS this, and it is when other illnesses are the trigger. I know adults who have it from lyme (although since it isn't P for pediatric they would call it something else, very common for Lyme to be accompanying other metal illness symptoms LOADS of people have MH issues attached to infections, its nothing new. I can imagine yo might be tired of so much "trendy" talk about it, but there are LOTS of people who do not improve on MEDS ---so it would stand to reason that treating infections/looking for them IS WORTH A SHOT. Right? People will be screened for various illnesses at some point in the future....before or when admitted to a psych ward. Of course more $ is made from a psych ward, than an prescription for ABX. Not all people and kids with PANS or PANDAS have OCD. In fact a decent easy read on it is Childhood Intereupted by Beth Maloney ( I think) since it presents in different ways. If PANS doesn't exist, then why are their clinics around the country treating it? Why are so many pediatricians diagnosing it? Often Strep is the first trigger and then more develop (like any autoimmune disease) OR are uncovered. Many of these kids have sensory issues or present as rigid, restrictive eaters....those symptoms can be part of many other DX so it is a problem when say, bit eating enough happens (sometimes from sensory, sometimes from celiac or another unhealthy gut issue) but Paych meds will not fix PANDAS/PANS so if a kid goes into a hospital and they are taken of ABX they will get sicker worse behavior, potential self harm, not eating etc I wouldn't be so quick to judge something that is working for hundreds ( I know at least 200 in my state are being treated) of children. Some may take psych meds IN ADDITION TO BEING TREATED with IVIG or antibiotics. MAyn of these kids are cured. PANS isn't a made up thing. The names may sound silly, but they are a very intense illness, and many can be safely treated with ABX

Heather Forsyth, PsyD, LP
August, 14 2017 at 6:16 am

This article is very concerning. As a doctoral level clinical psychologist I am interested in learning more about your training and continuing education that has brought you here. There is no such thing as mind-body dualism and to continue to fervently support it is quite frankly, unethical. Furthermore, I am curious what you hope to accomplish by writing such an article when we have documented evidence of children responding to protocols established and documented at Standford and PPN. As a clinical social worker I would like to know which health system you work at....both so I am aware for referrals and so I can reach out to medical doctor colleagues. I wish you the best but you are misinformed and potentially doing harm. Please feel free to contact me directly as I would like to continue a dialogue with you.

In reply to by Anonymous (not verified)

August, 14 2017 at 7:43 am

Hi, Heather. Thank you for your concern. This article is not in reference to my professional work, and I made sure to update it to clarify that. I am writing as a parent with an opinion. I don't work with children, so any fears you have can be dissuaded. Good luck to you in your educational endeavors and future practice!

Heather Forsyth, PsyD, LP
August, 14 2017 at 7:57 am

Melissa, I am providing you with a direct opportunity to consult with a doctoral level licensed clinical psychologist regarding your topic. Your references in your blog are lacking and you acknowledge that you are not aware of Dr. Swedo The leading researcher and clinician in this area? Is concerning that you took it upon yourself to promote a specific position, without fully researching the area, and referencing your profession. I appreciate you updating your blog, however you still reference your profession in your biography that's alluding to expertise in the area. You may wish to consult with your board to assist in clarifying your position. You should also state that you have no clinical experience in this area. I look forward to talking with you further. It is certainly concerning if you do not take this opportunity.

In reply to by Anonymous (not verified)

August, 14 2017 at 8:27 am

That's a good idea, Heather. I will consult with the board. For now, I removed it so as not to cause confusion. My point with it was to show how even people who study mental illness cannot always know what to do when it arises in their personal life. How would you like to consult? I'd give you my email, but I'm a bit unsure, considering the level of hate I've received in response to this. You could certainly message me on FB.

Heather Forsyth, PsyD, LP
August, 14 2017 at 8:30 am

I am sorry to hear if you have received threatening messages, that is certainly inappropriate. It would be best if you initiated contact through the email that I have provided. I look forward to talking with you. Thank you for your thoughtful replies.

Saro
August, 14 2017 at 6:16 am

It is not unusual for people who have had training in talk therapy to not "believe" that a medical issue could cause mental illness as a symptom. It negates all their training.
However it does exist and many parents are thankful for the diagnosis and their children have found relief from some very serious problems.
The scary lart if professionals "not believing" in these syndromes is that the longer the child goes untreated tge more severe the symptoms become and the more difficult to treat.
Highly respected Universities, physicians and psychiatrists know that PANDAS and PANS exists. Even more interesting they is increasing evidence that many more mental illness are caused by brain inflammation which is the cause of PANDAS and PANS.
https://campuspress.yale.edu/exploringmentalhealth/inflammation-and-mood/
https://www.sciencedaily.com/releases/2017/06/170614134307.htm
https://www.health.harvard.edu/newsletter_article/infection-inflammation-and-mental-illne…
http://www.medicalnewstoday.com/news/severe-depression-linked-inflammation-brain-288715

Jen Galton
August, 14 2017 at 6:00 am

Wow. Way to make things harder for those who actually have PANDAS. The fact that your child is mentally ill should not be a reason to raise further skepticism towards those who actually have it. Not sure if you've heard of PANS which is triggered by an illness other than Strep. You can ask any parent who has watched their child change overnight immediately after becoming ill. When you watch your child come back after a round of antibiotics you don't need a peer reviewed study. This article is terrible. You may want to do some reasearch on epigenetics, methylation, Mitochondrial dysfunction and RBC toxic element testing. So many families had their children jacked up on psych meds only to find out years later their child had Lyme or Bartonella etc. The CDC and many Drs shunned that Lyme and coinfections were widespread and Drs here in NC denied you could catch anything from a tick bite here other than RMSF. It took a brace parent who demanded tick testing and was forced to use a veterinarian to prove there are indeed many Lyme hotspots here. The same thing is happening with PANS/PANDAS. There are many underlying issues which got these kids to the place where they are. This is why there are varying treatment options. Many families are seeing HUGE improvements using Biomedical approaches. Raise skepticism all you want- you are helping no one. You should have written an article on having mental illness rather than making things more difficult for those dealing with it. To all the brave Drs devoting their careers to research and helping these kids- we applaud you. Pandora's box has been opened and research worldwide is showing many "mental illnesses" are in fact completely treatable by addressing underlying infection, pathogenic gut bacteria and detoxing toxic metal levels. Open your mind rather than encouraging others to slam doors in faces of those families struggling. There is something called the gut brain axis- interesting and groundbreaking stuff.

Elizabeth Bianchi
August, 14 2017 at 5:56 am

My son has PANDAS and I'm 100% sure I had it as a child as well. I wouldn't get insulted if someone asked if I thought it could be "xyz"? I would assume they are trying to help. I would take it as new info and if it was something I researched and know my child doesn't have, I'd kindly explain it. I explained PANDAS to s ftoend who's child has Tourette's. She wasn't insulted. She researched and feels her child doesn't fit the criteria. She didn't feel attacked or insulted or like her child's Tourette's was delegitimized. She felt appreciate if my genuine concern for her child. We both support each other and our children's differing diagnosis. What better source of info than patents who've lived through varying situations and illnesses. What if these moms stopped offering the idea of PANDAS and that one mom who never heard of it didn't get the help her child could have used because her child actually had PANDAS? Would you ever stop advocating for mental illness? Would you ever stop sharing info with concerned parents? Your heart is in the right place when you do and I believe the parents who suggest PANDAS genuinely are trying to share info and help as well.

Kat
August, 14 2017 at 5:44 am

I have two children. Both are "special, in their own way. I knew my son was different, by the time he was two, but really it was from the start. It certainly wasn't a sudden onset. He has OCD, GAD, ADHD, and a lot of characteristics of Aspbergers. He does not have PANDAS. However, my daughter, who is 6, does. It started when she was 4. When she skips more then two days of her antibiotics, I can tell. Giving her Advil, is lime giving my son Ritalin. Her Mycoplasma levels were at 4,000 when we started, and her labs showed she was immune compromised. Now, that said, I'm not one to believe in the vaccine, mold, etc causes. But I do believe that PANDAS is as real as Chromes disease, diabetes, and mental illness. Just because a disease has a clinical diagnosis, does not make it less real. I'm sorry if you find it offensive when people suggest PANDAS, but I would rather make that mistake,the have a child who does have PANDAS, get diagnosed with bipolar, or OCD, and put on strong antipsychotics. Does it ever hurt to try a round of antibiotics and antiinflammatories?
One last thing that puzzles me. You dismissed PANDAS as being a real diagnosis - for anyone - but stand firm that mental illness IS real. I suffer from Depression, so I can certainly attest to it being very real, but still, its a clinical diagnosis. There's no blood test for it. There are no studies even proving that a lack of Dopamine, Serotonin, etc, are even contributers, since they fluctuate so often. The treatment is as varied as the one for PANDAS is. All I'm saying is, we are on the same side of the fence here. Both of my children gave disorders that are treated with medications and other therapies. Why must we delegitimize any of it?

Beth
August, 14 2017 at 5:33 am

Your reference to the controversy surrounding the existence of PANS/PANDAS is not relevant to your point about delegitimizing mental illness. Ironically, it comes off as an attempt to delegitimize PANS/PANDAS, and that is where, as surely you know, both the National Institute of Mental Health and Stanford would disagree with you. Your readers should note that the 2012 blog you cite is not up to date on the latest research. See, e.g., JAMA Psychiatry July 2017 Association of Streptococcal Throat Infection With Mental Disorders: Testing Key Aspects of the PANDAS Hypothesis in a Nationwide Study, https://www.ncbi.nlm.nih.gov/pubmed/28538981; Journal of Clinical Psychiatry, Group A Streptococcal Infections Are Associated With Increased Risk of Pediatric Neuropsychiatric Disorders: A Taiwanese Population-Based Cohort Study, https://www.ncbi.nlm.nih.gov/pubmed/27464318; Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701547/; Improvement of psychiatric symptoms in youth following resolution of sinusitis, https://www.ncbi.nlm.nih.gov/pubmed/28012531. I could list many more. For the concerned parent, one good place to start is Discovery Magazine, http://discovermagazine.com/2017/april-2017/hidden-invaders. Both the developing science and the medical politics surrounding diagnosis are far more complicated than it may seem at first glance.
I would suggest that PANS/PANDAS is not about delegitimization but rather the recognition that "mental" illnesses have causes, that the brain is connected to a body and is not quite as privileged as previously thought (see, e.g., the lymph vessels connecting to the brain that were discovered just two years ago), and that this is one possible mechanism among others. It is a big-picture paradigm shift in medicine, where many, many primary care providers are unaware and/or are missing the forest for the trees. That is a reason someone might suggest looking at PANS/PANDAS to a mom of a struggling child; many parents haven't heard of it. It is fortunate that you were already aware.

In reply to by Anonymous (not verified)

Beth
August, 14 2017 at 9:22 am

Additional information: Dr. Sue Swedo is at NIMH https://www.nimh.nih.gov/labs-at-nimh/principal-investigators/susan-swedo.shtml and she is mentioned in the Discover magazine article.
In case anyone hasn't already posted this, the recent guidelines published in the Journal of Child and Adolescent Psychopharmacology can be located here: http://online.liebertpub.com/doi/10.1089/cap.2017.0042 (overview), Part 1 http://online.liebertpub.com/doi/10.1089/cap.2016.0145, Part 2 http://online.liebertpub.com/doi/10.1089/cap.2016.0148, Part 3 http://online.liebertpub.com/doi/10.1089/cap.2016.0151
There is much more to be found by going to pubmed and typing pans or pandas into the search bar. Here is a useful one, ibuprofen: Effect of Early and Prophylactic Nonsteroidal Anti-Inflammatory Drugs on Flare Duration in Pediatric Acute-Onset Neuropsychiatric Syndrome: An Observational Study of Patients Followed by an Academic Community-Based Pediatric Acute-Onset Neuropsychiatric Syndrome Clinic, https://www.ncbi.nlm.nih.gov/pubmed/28696786

Karyn Bennett
August, 14 2017 at 5:32 am

I have lived both sides of this . My oldest daughter is bipolar. My second child has Pans/Pandas. The difference , my second child got better with antibiotics, my oldest did not. I do believe that in time we will find that this is all connected and mental illness will be found to be caused by an autoimmune response. I think a breakthrough in mental illness is around the corner. It always makes me dumbfounded that Drs can agree that UTIs in the elderly can cause confusion and delirium but they will deny strep can cause OCD etc in children.

Brandons mom
August, 14 2017 at 5:28 am

One more thing. Maybe you should take a look at the law in IL now that says insurances have to pay for the treatment. So you think there is nothing medically proven that it doesn't exist? You should educate yourself more before writing this article.

Brandons mom
August, 14 2017 at 5:22 am

I think this article shows that maybe the writer should reevaluate. How about you come stay in my home and see what pans/pandas is really like and why your child might have it. Have you tried an antibiotic for your child or you just say mental illness and throw them on some meds? As parents we seek out since we are the voice for our children. Highly offended because my 8 year old didn't ask to walk this road and I can't imagine your child did either but you are so quick to say whats its not, pandas.

Mother
August, 14 2017 at 5:19 am

I just went through an extremely traumatizing year with my daughter, diagnosed with Pandas. The first few months were spent taking her from doctor to doctor begging for help and being told that it simply was not true that she became a different person overnight, stopped speaking, couldn't walk, eyes rolling in the back of her head, attacking people who interacted with her. If I would not have stumbled upon other parents talking about Pandas, my daughter would never have gotten the treatment she needed. Thank God for those treatments that you brush off. If only we didn't have to spend tens of thousands of dollars for them, it wouldn't be so difficult to swallow when I see your words. That's fantastic that your child does not have Pandas. You will not find on parent of a child with Pandas who would wish this on anyone. Since you are a parent of a child with special needs, it would be more helpful if you'd be a little more respectful and have some empathy for the families who suffer, rather than spew bullshit that you've gathered from your google search. You must have cut it short, because the information you're spreading here is not accurate, and there are many credible sources of information that you failed to acknowledge. If you don't have to deal with Pandas, and don't want to be helpful, I think all parents and children with Pandas would appreciate it if you focused your anger, or irritation, or whatever it is, on something else. We're already fighting a battle in our homes, doctor's offices, schools, and everywhere else.
(Please sub Pandas/ Pans in all references to Pandas).

Jennifer
August, 14 2017 at 5:18 am

I get that you do not think that your son has PANDAS, and that is ok. However please do not deny the research that exists rhat supports PANDAS . The study "Group A Streptococcus intranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells" has gone a long way to provide insight into neuropsych complications of strep. And no not ever forget that throughout all of history diseases and illnesses existed long before they were legitimized with peer reviewed research. Simply because the research has not been done yet dies not mean a disease/illness/syndrome dies not exist. Once upon a time Multiple Sclerosis was thought to be psychosomatic. Obviously now we know different. So whether or not you believe you son does or does not gave PANDAS, do not negate the possibility for other children.

Amber Harper
August, 14 2017 at 5:16 am

Sorry I typed my email address before correct address is below.

Amber Harper
August, 14 2017 at 5:15 am

I feel your pain for your suffering child, nothing compares to that pain. However, as the parent of a child who has PANDA's and the fact that I am well versed in mental illness because like you I am also a licensed clinical social worker I feel you have unintentionally just said the auto immune illness that some children do have does not exhist. There is new research that came out in showing how in PANDAS T cells cross cross through and across the blood brain barrior which is the premise of PANDAS/PANS along with other major research backing this illness. However, your underlying point is valid. If the child has mental illnesss and not a medical condition it is treated differently, but I would caution you from dismissing an entire category of autoimmune illness because of your own experiences which is how your article came across which from your response to a comment may not have been what you intended.

In reply to by Anonymous (not verified)

August, 14 2017 at 7:06 am

Thanks for catching the underlying message, Amber. If anything, the phrasing unintentionally fired up a community as well as discussion. I could change it around, but I feel that would be a disengious. I'll continue to read the interesting comments coming through. I'll also continue to wonder if maybe the PANDAS Community has some kinda alarm set on Google for when the subject comes up! :)

In reply to by Anonymous (not verified)

Janice Tona
August, 14 2017 at 7:23 am

Dr. Agalliu's research on blood brain barrier can be found here http://columbiaagalliulab.org/

Janice Tona
August, 14 2017 at 5:15 am

I want to thank you for your straight forward writing. I am sure this is also the way many parents of children with Tourette feel, since symptoms of Tourette and PANDAS/PANS are similar, but studies have shown that interventions for PANDAS/PANS are not helpful for kids with Tourette. PANDAS/PANS is a different condition from mental illness, tourette, and other neuropsychiatric syndromes and has unique characteristics such as urinary frequency, sudden deterioration in handwriting, sudden onset of sensory processing problems, and a sawtooth pattern that is linked with an infection or metabolic condition. PANDAS and PANS are real, even though your child may not have this condition. Likewise, standard treatment for mental illness is often not helpful for kids with PANDAS/PANS and treatment for PANDAS/PANS would not be helpful for kids with mental illness. You seem to disqualify the concept of PANDAS/PANS in your blog, and that is concerning to me. The information you have sited is over 5 years old and back in 2012 it was a reflection on previous literature and the opinion of one person. There has been an explosion in evidence regarding the link between the immune system and sudden-onset neuropschiatric disorders over the past 5 years, and I would be happy to send you a list of peer-reviewed articles if you would like. The condition is well-accepted by the NIMH and the internation OCD foundation. Some people with psychiatric symptoms have mental illness and some people with psychitatric symptoms have PANDAS/PANS, just like some people with fevers have the flu and some people with fevers have sepsis. As we learn more about our immune system and our brains we will be able to differentiate the underlying cause of the symptoms we see. Until then, parents of kids with PANDAS/PANS will need to tolerate well-meaning family and friends who suggest the parent is looking for an excuse and an "easy" wayo out when psychiatric medications could cure the problem, while dealing with the uncertainty of having a child with a poorly -understood immune disorder that may mean a downward spiral and loss of function with simple germs. Likewise, parents of children with mental illness will need to tolerate well-meaning family and friends who suggest another strep test while dealing with the uncertainty of having a child with mental illness who is trying to grow and develop with a poorly-undertstood brain in a school system and society that are challenging and full of stigma. I wish you and your family all the best and truly do thank you for sharing your thoughts.

In reply to by Anonymous (not verified)

August, 14 2017 at 7:01 am

Thanks, Tina! I'll continue to research, and maybe others will post the latest peer-review articles. I think your distinguishing between the symptoms of PANDAS and symptoms of mental illness is important. I'm bound by a word limit, so I couldn't throw in the other physical signs associated that AREN'T typical of mental illness. Maybe you can direct me to authors of the most recent research on PANDAS?

Heather Forsyth, PsyD, LP
August, 14 2017 at 7:08 am

Please contact me Melissa. I am concerned that you are either unemployed are not within the healthcare system therefore you do not have access to. Do you journals which is why I am concerned about you putting miss information out into the public space. I am happy to share journal articles with you as a licensed an ethical clinician.

In reply to by Anonymous (not verified)

Heather Forsyth, PsyD, LP
August, 14 2017 at 7:11 am

My apologies, I am used the dictation for my electronic medical record system. My phone does not work as well.
I am concerned that you do not have access to peer reviewed journals. I am concerned about you putting misinformation into the public space. As a licensed and ethical clinician I am obligated to help you become more informed.

Janice Tona
August, 14 2017 at 7:11 am

Sure! Actually - the July issue of the Journal of Child and Adolescent Psychopharmacology was a special PANDAS/PANS issue, which presented new guidelines for behavioral, immunological, and infectious disease treatment. I believe the articles will be available in full-text for a few weeks, so you may want to log in now and dowload the articles to read as you have time. http://online.liebertpub.com/toc/cap/25/1
Also, the NIMH website for PANS should be cited if you are citing the NIMH mental illness webpage. The PANS webpage references are not real current, but the description of the condition is good and may help parents to differentiate. https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml

In reply to by Anonymous (not verified)

Janice Tona
August, 14 2017 at 7:20 am

Actually - I made a mistake. The JCAP issue I posted was the 2015 special issue. There has been much more research since then and the 2017 issue with guidelines is here http://www.liebertpub.com/global/pressrelease/revised-treatment-guidelines-released-for-p… If you look at the reference sections of any of the articles you can see more recent research. Let me know if there is something specific you would like to see.

Amber Harper
August, 14 2017 at 10:42 am

Here are some research based articles for you, all recent. (Except for two that are just good summarizations of the info). Took me a minute to pull them together.
Association of Streptococcal Throat Infection With Mental Disorders
http://jamanetwork.com/journals/jamapsychiatry/article-abstract/2629065
Hello from the Other Side: How Autoantibodies Circumvent the Blood–Brain Barrier in Autoimmune Encephalitis
http://journal.frontiersin.org/article/10.3389/fimmu.2017.00442/full
Hidden Invaders
Infections can trigger immune attacks on kids’ brains, provoking devastating psychiatric disorders. (Not scientific but good explanation)
http://discovermagazine.com/2017/april-2017/hidden-invaders
World first study reveals antibodies that may trigger psychosis in children
https://www.sciencedaily.com/releases/2015/03/150331102455.htm
Strep A: Recurrent Infections Affect The Brain
http://www.scienceworldreport.com/articles/34647/20151215/strep-recurrent-infections-affe…
Group A Streptococcusintranasal infection promotes CNS infiltration by streptococcal-specific Th17 cells
http://www.scienceworldreport.com/articles/34647/20151215/strep-recurrent-infections-affe…

In reply to by Anonymous (not verified)

Alicia
September, 19 2018 at 1:48 pm

Thank you so much for this. As a parent who is still seeking answers, I absolutely disagree with the author. I welcome every concerned suggestion that people have made in our search to help our child.

Amy
August, 14 2017 at 5:13 am

Well we were actually blessed with pandas diagnosis. My daughter had acute onset of symptoms. 22 months being treated for OCD, Anxiety and Panic and then a quick 21 day return to baseline with an antibiotic. It was like watching a miracle. So blessed to have my happy, confident kid back!

Noel
August, 14 2017 at 5:12 am

My child had pandas and NEVER had a typical bout of strep. We thought she had severe ADD. I'm so thankful for the online awareness for such a cruel disease. We tested her strep titers and swabbed her for strep. She was positive AND her titers were elevated. You don't have to have a typical case of strep to actually have strep. PANS is also a possibility.
My 7 year old has made a complete recovery. She was crawling under her desk, biting metal pieces off of her pencils, and had mouth and eye tics. Eczema, intense mood swings/fits...I could go on and on and on. Thank God for the well meaning mothers who walked me through it and educated our family.
We've learned through 5 medical doctors that there is ALWAYS an underlying cause for mental illness. It can be bacterial, viral, mold, food intolerances. We fought hard to figure out all of her triggers and she's living a normal life without medication. Day 1, I knew I'd never label my 4 year old mentally ill.
This post is just awful. It is shaming parents who HAVE figured out the underlying cause of illness.
PANDAS/PANS research is validating us. Our kids make unbelievable recoveries. This postakes you seem angry. :(
Have you researched pandas, pans? What about Lyme?
This post is very offensive to those of us who lost our felt as if we lost our children and then fought the fight of our life to get them back.

In reply to by Anonymous (not verified)

August, 14 2017 at 5:21 am

I'm sorry you find it offensive. That's the hard part about parenting in general, but definitely when parenting a child with special needs. There are so many differing views out there. I am not asking you to change your parenting technique. What I've asked that others don't ask me to change MINE. I have researched PANDAS/PANS and Lyme. My child does not have any of them. Would you be willing to email me the names of your 5 doctors
who make that claim about mental illness? (I'd obviously not ask you post those publicly). I'd like to interview them to hear more about this and to see the research they're referencing. I'd be happy to then do a follow up article on this point of view.

Petra
October, 5 2018 at 10:53 pm

Melissa, I genuinely missed the part of your long post where you define what is the exact difference between medical/physical and mental illness?
As far as I know conventional psychiatry considers mental illness completely organic.
there could be 100 other reasons for your childs condition, but it is biological in nature so I don't understand your anger (unless you fail to understand scientific background of psychiatry but you can't shoot out your anger on smarter people for this).
Conventional SBM daily publishes articles and research on treating legit psychiatric conditions with manipulating microbiome, immunoty.. also the fact that psychiatric drugs have many immune modulating properties.
I just fail to understand your anger. Wtf?
I usually see it from undereducated.
Good luck
ps. im not a parent but your post is disrespectful towards all the parents with Pandas kids who fight (more than you it seems).
you wasted your energy explaing them how stupid they are, bettet spend it taking care of your kid better.

In reply to by Anonymous (not verified)

Brandons mom
August, 14 2017 at 5:25 am

I am a pandas mom and i guess if you claim mental illness at least you could get that covered by insurance. Us pans/Pandas families have to pay for this crap out of pocket so I don't think we are making anything up. I agree with you that this is very offensive to us who have and are still fighting to bring our children back.

Kat
August, 14 2017 at 5:03 am

How are you any different than people who deny food allergies or Chrohn's disease? You just wrote an entire article denying other people's children may have PANDAS because it offends you and you googled it. My daughter has a PANS diagnosis from 3 different well known mainstream Doctors and she's recovering from that and autism. Who are you to say any different?

In reply to by Anonymous (not verified)

August, 14 2017 at 5:25 am

I'm happy to hear your daughter is recovering. Best wishes to you and her.

Suzi
August, 14 2017 at 4:55 am

I'm sorry your son has a mental illness. I do understand how mental illness can impact your life. My son has PANDAS and Babesia my daughter has PANS . Both are 95% back from an overnight mental illness. The therapies are proven and they do work. If you'd like to read our story, feel free at www.biologyclassroom.com. I wish you and your family the best.

Kim
August, 14 2017 at 4:32 am

Perhaps instead of getting angry at people who ask if you've considered PANDAS/PANS, you should just respond with "thank you for suggesting an avenue we may not have considered. However in this instance, we have considered infectious diseases, and my child doesn't fit the criteria of PANDAS/PANS." The parents who are suggesting PANDAS/PANS are the ones whose children were given mental illness diagnoses despite not fitting the criteria of them and without consideration of an infectious disease at play. Please do not become the parent that has exasperated you. We all need to be in this together. If you are unwilling to keep an open dialogue with all parents, you have forfeited your unique position of educating parents whose children do not have an infectious disease trigger, environmental trigger, and/or vaccine injury that caused symptoms of a mental illness. There has to be room for both sides of the discussion without villainizing either side. What may be true for one child may not be true for another. But we should all be open and willing to learn from each other and our different journeys.

In reply to by Anonymous (not verified)

August, 14 2017 at 4:49 am

Thanks for your response, Kim. I'm not angry, and I'm sorry if it came off that way. Neither am I intending to "villainize" parents who suggest this. I do like your word "exasperated", though. What I hope is that people who suggest PANDAS also consider how it might make others feel, or how it may affect the course of a child's mental health journey. Most parents aren't well versed in mental illness, so when someone offers them something that seems more "solid" (like PANDAS or other medical diagnoses that can be "cured"), it makes me very scared that they will stop considering mental illness all-together and follow a course that's potentially dangerous or disheartening. I'd like there to stop being the stigma behind mental illness that leads to a refusal by many to accept the diagnosis. So it's not the idea of PANDAS being a possibility that upsets me. It's more the idea that people will accept ANYTHING ELSE but mental illness. If that makes sense.

Kim
August, 14 2017 at 5:15 am

In my experience, infectious diseases and things other than mainstream diagnoses are NOT considered. So fearing that PANDAS/PANS will replace a mental illness diagnosis is not well founded. It took 17 doctors of varying specialities over the course of 5 years to determine my son has Lyme triggered PANS. It wasn't an easy diagnosis, Abe treatment has been evasive and mostly self directed. It would be far easier to accept a mental illness diagnosis than to travel down this pathway we are on. But the fact of our journey is that psychiatric medications do not alleviate symptoms, and the symptoms are cyclical suggesting an infectious root that cannot be explained by genetics. And yes, we've had over $50k of genetic testing, bloodwork, etc. So when s parent suggests considering PANDAS/ PANS, they aren't trying to find a way out of a mental illness diagnosis. They are trying to save you from years of agony as well as longer treatment if the condition is allowed to continue unchecked. I am not angry with your post. But because of my unique position as a parent of a child whose PANS went undiagnosed for many years, I think it's important to not forfeit my opportunity to educate you on a medical disorder / disease that is more likely to be misdiagnosed than recognized.

In reply to by Anonymous (not verified)

August, 14 2017 at 8:48 am

Thanks, Kim! I appreciate it.

Andrea
August, 14 2017 at 6:20 am

So then why do you think parents who want to keep searching for help and a cure for their child should be stopped from doing So? It's like your saying because I stopped searching and accepted diagnosis "X" so should everyone else. Sorry. But if you want to settle and decide how hard you fight for your own kids illness that's your choice. But making a post bashing others who choose to not settle for "X" for their own child is not an appropriate way to "raise awareness for mental illness"

Kristi
August, 14 2017 at 6:28 am

What is *mental* illness anyway? Last time I checked the brain was connected to our physical bodies...the term itself is part of what feeds the stigma that keep many people (and parents) scared, ashamed and often times dealing with SYMPTOMS that end up feeding an alphabet of diagnosis' that result in, at the very best, palliative care in nature. I hope you'll keep searching for answers for curative care!! The answers may not be clear, but don't give up!

In reply to by Anonymous (not verified)

Ronald Cephas
August, 14 2017 at 5:58 pm

If you find yourself unable to properly define "mental illness", you should not be attempting to speak as any sort of authoritative figure on the subject.

Leave a reply