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.
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.
APA Reference
David, M.
(2017, August 14). No, My Child Does Not Have PANDAS, He Has a Mental Illness, HealthyPlace. Retrieved
on 2024, December 18 from https://www.healthyplace.com/blogs/parentingchildwithmentalillness/2017/08/no-my-child-does-not-have-pandas
Author: Melissa David
Everyone is uninformed until they’re informed.
I don’t see how the suggestion that you’re child might have something like PANDAS means they’re calling you neglectful.
I wish someone hadn’t “neglected” to “inform” my mom about PANDAS years ago. I am cured today because a helpful person suggested it to my mom.
To put together an uneducated article is extremely hazardous for children and parents of children who actually do have pans or pandas.
My daughter did not have the typical strep throat. She threw up when she was 5 a couple of weeks later she started having sudden OCD, then came depression, anxiety, rage....
We have tried everything Mental Health medications that did not work. After I did research on why my child got so sick so fast I found pans/pandas. I diagnosed my child, I did not believe in this disorder, it was the craziest thing I've ever heard of. But this is my child and I know something wasn't right.
After sometime of researching and not just Googling s*** I realized this had to be something to explore I requested her pediatrician put her on 30 days of penicillin. She started eating again she started smiling again and in 45 days her OCD patterns started disappearing. 2 years later she got a flare and this all came back, this time penicillin didn't work. I told her doctor after doing more research, to try Augmentin for 30 days and that worked.
A couple of years later she had another flare. This time nothing's really worked and we've tried so many things I can't even begin to list them off. She was even diagnosed by an MGH expert with depression. She was wrong. My daughter now sees an excellent Panda's doctor and she says my daughter should have her tonsils and adenoids out and she's betting anything that because of the pattern of medications not working and in the beginning they did work she's betting that my daughter has staph infection in her tonsils and adenoids along with strep which would not be detected by a simple swab.
You are entitled to your opinion, and I will not judge you for that however if somehow your child May possibly even the littlest thought of maybe might have pans that can be cured much easier why would you not even entertain the idea and do more research. Having another child who has the most common OCD and depression I know there is a difference and I'm not saying every kid who has mental illness or OCD or depression has pans of pandas but I can tell you what one child goes through the other child does not even though they're equally as horrible.
I know you cannot find what these children go through online trust me what my daughter goes through would blow your socks off. If you ever want to talk and find out more I would be more than happy to talk to you. Find me online
June Greenlaw Waltham, ma
Whatever your child has, i feel sorry for him/her for depending on your help for their future as you seem to be Extremely closed minded and actually fear based to rely on available data, to feel more secure about medical healthcare.
I am ex PANS patient who does not have PANDAS, but my mental symptoms responded to various allergies, infections. I recovered with IVIG and other immune and infections treatment.
I spoke to hundreds of doctors and family members as closed minded as you who failed to interpret science and slowed me in my getting help and recovery.
I am an adult woman now who would be dead if she depended on someone Like you:-(, so u hope your child gets luck.
This is not to say mental illness doesnt exist and that immune mediated mental illness is common, but you seem to not even consider it, and again you quote lack of science.
Just spooky to run into this frustrated article
Gives me flashbacks on all the dumb people that stood in my way
Btw there are other autoimmune illnesses presenting with only psychiatric symptoms, Like neuropsychiatric lupus or Sjogrens, can start several decades before physical symptoms. Instrad of embracing New research and these valuavle information to Save some lives as not everyone can be helped with psychiatric treatments, some need immunomodulory approach, you just spammed internet.
Thanks
While I respect that your journey is unique, as is everyone else's, I can't help but note that you may be delegitimizing someone else's pursuit of treatment for their own child. As a person who suffers from both mental illness AND a rare autoimmune disorder, in my experience, it was exponentially more difficult to have doctors diagnose or even acknowledge the possibility that my symptoms were indeed autoimmune related.
It took me years of fighting with doctors; showing them photos of my symptoms, bringing in my husband to validate what I was saying, and begging them to do lab work based on the research I had done. I wish to god that one person would have told me about my condition so I didn't have to spend years trying to figure out what was happening to me by myself. So no, I don't think that another person suggesting that you may want to research PANDAS "implies that parents like you are uninformed" since, as you said, only "one in 200 children has PANDAS" and so there's a genuine chance that you may not have heard of it.
While I agree that mental illness should never be stigmatized, I don't think that it's warranted to immediately dismiss other potential causes. You need to be willing to look at all possibilities (mental illness, PANDAS, and everything else under the sun) and narrow it down based on your symptoms and test results alone.
You say that people suggesting PANDAS are "perpetuating a culture that leads to people denying legitimate medical disorders" and then say "researchers have not yet found evidence that PANDAS exists." I hope you see that these two statements are blatantly contradictory and I whole-heartedly hope that you will continue working to de-stigmatize mental illness but reexamine your perspective so that you don't stigmatize the experience of others.
Lastly, autoimmune disorders do not "fit into a 'curable' medical model" as you stated. They are exactly the same as mental illness - neither is curable. I will be on lifelong medications for both my mental illnesses and autoimmune disorders. They are both challenging. They are both scary. Neither is preferable. Neither should be stigmatized.
Congratulations for being brave and sharing your personal journey and experience. It is terrifying how free speech is not such. PANS occurs and it is as real and plausible as baseline mental illness. The point of your article has unfortunately being missed by people feeling defensive. Mental illness deserves more research and acceptance so the underlying mechanisms and triggers are better understood, treated and who knows in the future in some cases even prevented from developing or worsening.
As a child psychologist I am starting to believe that most, if not all, mental illness in young children has a physical or medical cause. (Obviously trauma must be thoroughly explored and ruled out. But even then there is thinking that perhaps trauma alters the body's immune response and can trigger medically based mental illness. Very scary thought.) I don't think there's any controversy that your child indeed exhibits mental illness but the question is what happened in his brain that led to it? I can see how it can be disheartening to keep hearing how others found the cause for their child's illness and ostensibly the cure (although by no means is it an easy or straight path to recovery). I hope you don't mind, but in closing I feel like it's my responsibility to add that I have seen so so many different presentations of PANS (not just the strep variety). Indeed and frighteningly enough, some kids present just like how you described yours. No (known) strep infection, no OCD ( just behavioral/mental illness symptoms) no evidence in basic blood work and no response to antibiotics alone. It's a fine line between acceptance of a diagnosis and hope for a cure, but you can have both. One day soon, I pray, medical causes for all mental illness are uncovered and easily diagnosed and cured. Wishing you all the best.
My daughter has Pandas. It started January 14 @ 9:00pm. And went away a week after starting antibiotics. It was sudden and frightening and horrible. I would never wish this horror on any parent. Pandas does exist. There are major hospitals that have PANDAS/PANS clinics, much research proving it and many families stories of horror and healing. Please do not pretend that it doesn't exist. You're hurting those families whose children are unfortunate enough to have PANDAS/PANS - to seek out solutions that can help them!
Here are a few recent articles from Peer-Reviewed journals, authored by researchers at NIMH, Columbia, Stanford, and others.
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-pa…. 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.
How do I get in touch with you Melissa? I live in Minnesota and have an 8 year old at the hospital till possibly next Tuesday and then we are looking at partial hospitalization. My son was previously diagnosed with ADHD, Anxiety and autism. Today I was told they do not believe the other diagnoses are correct they believe it is Disruptive Mood dysregulation disorder.
This post seems to have struck a nerve! One thing I would remind everyone is that bullying is, in fact, the worst possible way to get your viewpoint out there. I'm sure a number of you would take offense to the idea that you're somehow being bullies. I can assure you that to anyone who comes across this post, as I have, your message is being lost to the demeaning tone of your words. You're not legitimizing your viewpoint, you're undermining it.
She's not saying it doesn't exist, people. She simply said that nothing is gained from people insisting on an undiagnosed PANDAS issue. If I told you that you child's issue was caused by a latex allergy, would you simply agree to it? Now, does the fact that your child does NOT have a latex allergy mean that latex allergies don't exist, or that you believe that anyone who claims that they do is an uninformed fool? No. Stop being so dramatic, everyone.
Actually, she did question the existence of the condition and referenced one outdated secondary-source opinion paper in her rationale by saying "When examining the peer-reviewed research on the subject, however, researchers have not yet found evidence that PANDAS exists". I submitted a comment on this yesterday and I agree that nothing is gained by insisting on PANDAS if a child does not have the condition. But surely nothing is gained by blogging on a topic as if you were presenting facts without actually reading the current literature.
"I agree that nothing is gained by insisting on PANDAS if a child does not have the condition." - Correct. And that is the ENTIRE POINT OF THIS ARTICLE. Which 90% of the posters here have missed entirely. You don't get to claim marginalization if you operate like this.
She did say it does not exist which does not validate all those with a different experience than hers and her son's. She also did not clarify if she has many people suggesting PANDAS, or the same people pushing the idea. The later being the problem the former can be helpful to inform someone or a little known condition that should maybe be ruled out before taking psychiatric medications. I only know about PANDAS because of a friend whose child has it. Since then I have asked many doctors if it could be a possibility to explore for my child who had many ear infections, strep throat infections and eventual emergency tonsillectomy at a teen. Guess what not one single doctor or psychiatrist had ever heard of PANDAS. But she has also had many different diagnosis from many specialists so no one can agree on which menal illness she has. I came across this post while seeking information on my own. I know and accept my daughter has mental illness hopefully the current diagnosis is correct because the medications have potentially life changing side effects that will be permanent. I have also watched the guessing games of how to medicate her. If there is a 1% chance it has been caused by something else and she does not belong on the medications she is taking with all their side effects then I want that ruled out. I wish I had heard about PANDAS sooner because now as a young adult treatment is near impossible to find as is finding someone willing to test for it. I wish this woman luck on her journey with her child, but wish she would see the suggestion people have given her comes from a place of caring.
Wow. If only we could all live in a place where someone was trying to cram PANDAS down your throat. PANDAS parents can't find enough resources or that take insurance.
I am very glad your son does not have pandas. Thank God because the systemic invalidation is demoralizing and can tear down even the strongest of parental advocates. My son showed symptoms around two after multiple strep infections and while antibiotics did little to ameliorate his symptoms his one exposure to a three week course of Prednisone showed me the child underneath his symptoms and humbled me by showing me that even simple behavior issues can have a medical cause. Having been in psychiatry for almost thirty years I remain amazed at how suppressed past knowledge is these days when it comes to the role of various nutrient based genetic variances on what we now call a "chemical imbalance". And pharmaceutical companies would prefer it this way of course. I am grateful that I managed to not miss this in my son and I hope that your son gets the help he needs as well. I do treat my clients with pharmaceutical interventions but I always wish they had the resources to go for the root cause. Not everyone can nor wishes to however I have seen my fair share of miracles with this approach so it's never too late. My best to you and your son on his journey to health.
Thanks, Karyn! I appreciate it. I'm sure pharmacy companies benefit from the sell of antibiotics, too, so I'm sure they don't lose out regardless of what path people take. I'm not worried about them so much (well, not in terms of THIS discussion). Like you, I'm worried about my child. I'm glad the treatments worked for yours! Here's to each family finding a good fit for them.
Wow.. By trying to support your own position that your son is mentally ill and should be accepted and supported, you, in a rather snarky manner, put down other parents who also did their research, went to appropriate doctors, and are trying to find support for their children. My son showed signs of OCD and anxiety at age 10. We got him counseling, took psych meds, fully accepted his mental illness diagnosis without shame (As a psych major/school counselor, I'm not into stigmatizing people with mental illness). We did CBT, exposure response therapy, relaxation techniques. He took antianxiety meds, antidepressants, a number of typical medications to treat OCD. We went to the International OCD Foundation conference six states away. We read every OCD book under the sun. We did this for over 3 years. And guess what? None of it worked. The meds actually MADE HIM WORSE.
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.
Thanks, Maureen! I'm glad to hear your child is doing better. Mine has been on antibiotics with no change in behaviors. He has had improvement on psychiatric meds, though. That's what I was trying to get at in this article: we have done as much as you have. It's clear in other articles I've written, too, and I still get private responses (or sometimes public) saying I haven't done enough. I get these almost without fail from the PANDAS community. All I'm asking is that, if I say I've done everything, you believe me, just as you'd expect me to believe you. That's what this article is about. It may have sounded snarky. I'm a natural fan of snark and usually do my best to tone it down. However, one thing you and I have in common (probably one of MANY things) is that we get extremely frustrated by unsolicited medical advice. Unlike this blog post, which you chose to read and comment on, people who suggest PANDAS to me do so without asking whether I want their advice at all. I tell them my son doesn't have it, and they tell me the only reason he doesn't have it is that I personally have given up on him. They don't consider that perhaps I have looked into biological factors of his illness. If I hadn't looked at everything, I would ask for advice. Usually, though, the requests that I get my son diagnosed with PANDAS is unsolicited.
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.
Thank you for your reply, Melissa. I think it was the tone of the article that struck a nerve with the PANDAS/PANS community, and I think you had anticipated that reaction. PANDAS/PANS parents have passionately fought be heard, and thankfully, contrary to what your post suggests, the medical research and practitioners have finally caught up with what parents have been reporting for years. We really don't all have munchausen by proxy. I wish you and your son the very best. At one time I was in your shoes as a parent of a child with "only" mental illness, and I got much less understanding and support then than I do now that his condition is considered more a "medical" thing. And that's not right. He deserved as much compassion then as he does now. One doesn't trump other in my opinion...
I definitely would not have suggested Munchausen by Proxy! Believe me, though, mental illness continues to also be ignored, minimalized, and criminalized. Advocates can't get it covered by insurance either, sometimes. Not to an equal level as physical ailments. For me, on the other end of the spectrum, the PANDAS community is telling me my child's mental illness isn't real. I'm told mental Illness doesn't exist. It's entirely physical and I'm neglecting his needs and refusing to "fight". For a community that feels so strongly invalidated, there is a definite knee jerk response to do the same to parents who've determined mental illness is at play. That was the point of the article. I'm not going to cheapen your child's diagnosis by saying mine has it when he doesn't. But there is no respect for that decision despite the strong desire from the community to have respect for the PANDAS community, which is why I pointed out the ways in the article in which it can feel hurtful. I'm sorry if the tone came off poorly, but I'm pretty sure the abuse I've received in messages elsewhere is not the appropriate response and shows why I respond the way I do. I hope you can all read some of the hatred spewed on my FB stream (or even here) and understand why I feel strongly on my end as well. My child having a mental illness is NOT bad. It's not a sign of weakness. It's not a sign I haven't done my research. In his case, it's not a sign of inflammation, either. Please respect that.
In reading through this I totally get where you are coming from. And I agree with the sentiment of not telling you that you haven't done enough, but your article was written from a really unloving place with some of the suggestions that there's
"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.
I'm so very sorry to hear that your child is ill. First and foremost, a sick child is a tragedy regardless of the cause. I can only hope that your family finds him the relief he needs so that he can increase the quality of his life as he grows older. With that being said, I am also sorry he does not have PANDAS. And here is the ONLY reason why. My 6 year old became significantly mentally ill after a strep infection (including sudden onset OCD) so But also meeting all other PANDAS symptoms. After the help of antibiotics, her symptoms disappeared. I wish that I could help you heal your son in the same way I could heal my daughter. I wish that organic, chronic mental illness had a similar solution. I'm a mental health therapist...so I'm aware that it does not. There will be no easy answers for your family. But I kindly ask you not to attack the credibility of a diagnosis I KNOW my child has. I only wish your family hope for healing.
Melissa, assuming that a MEDICAL cause of your child's mental illness would have been found by the mainstream medical community (as you stated when you said "If something other than mental illness was at play, we’d know." is so inaccurate, I actually feel sorry for your child. That you would simply accept the mainstream medical establishment's limitations in their ability to seek the kind of answers which may STILL, EVEN TO THIS DAY, be available, is stunning. I wasted 6 years, asking regular medical doctors to do blood work and help me with what I intuitively suspected was a PANS/PANDAS problem, continually hoping that SOMEONE would run the right blood work to prove the titers were elevated which correlated to why my son got mentally "well" every time he took antibiotics. I even had my son tested for the tick borne illnesses at the regular doctor -- and they all came back negative. So if I had stopped there and simply ACCEPTED the psychiatric referral, we would have COMPLETELY MISSED that my son was actually profoundly sick with multiple vector born illnesses! See, the mainstream CDC tests that doctors give, for these illnesses, are highly flawed. Even the doctor himself admitted this. They are wrong 50% of the time!! Because they are looking for the autoimmune markers against the infections (Like Lyme, bartonella, babesia & erlichiosis...) The problem is that if the germs have been in the child's body for any length of time, the immune system simply cannot mount the response against these germs. And so, while the regular test from a doctor's office would lead a parent to believe that a negative diagnosis means that the child is free from those germs, in our case, it was simply not so. I had done my research (something that seems to be sorely lacking in your case, from what I can tell) and I KNEW that Lyme and the coinfections are difficult to find. I also learned that MANY of the tick born illnesses, when chronic, mimic mental illness. Some create symptoms that are so bad that, if left untreated, the patient can develop psychosis! I was simply not willing to accept my doctor's limited ability to help me and I found some labs that test for a completely different aspect of the disease process. Instead of titers to the germs, i chose PCR tests, which actually search for the bacteria's DNA in the blood. How can you argue with DNA???
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.
Thanks, Liza! I'm glad to hear your child is better. I'm not sure if you read the entire article or not, but I most certainly didn't 100% rule out that a specific child has neuropsychiatric symptoms due to inflammatory diseases. The point of the article was to say that people who insist that my child has PAN/PANDAS are telling me mental illness isn't acceptable and that I've not researched, taken him to the same types of doctors you have, or tried various treatments. The assumption is that people with mental illness, but especially the parents of children with mental illness, have given up and been hoodwinked by "mainstream medicine" or Big Pharma or whomever you choose. While I respect your beliefs, I am not neglecting my child, nor are you (I presume, though I don't know you and that's certainly worth remembering). This is what my article is trying to say: that mental illness does not = not fighting hard enough or not being acceptable. I'd like to make the argument that having a mental illness is perfectly acceptable and treatable. All I ask is that people who want my child to have PAN/PANDAS accept my response when I say he does not. Just as I accept yours when you say your child DOES.
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 would recommend you edit your article and use more examples of how people who have encouraged you to investigate PANS/PANDAS rather than just settle on MI were somehow insinuating that you had "given up and been hoodwinked by “mainstream medicine” or Big Pharma or whomever you choose." Ypur article simply does not express that. In fact, it only expresses your cynicism and resignation. I read nothing in the blog post that showed me that people treated you in that manner. It just read like a skeptical, naysaying parent who had, in fact, not done enough research. Maybe the fact that this is how you communicate is part of why parents have made this assumption about you. I can only speak for myself and say that your article only came across like the rantings of a close-minded cynic who I'm fact, had NOT ruled out a biological cause and was now desperate to justify herself. Maybe I'm wrong, but maybe you should run your articles by an editor and collect some feedback next time rather than just post something so wildly inflammatory and seemingly reckless.
Thank you for the suggestions. At this point, I think the response I've gotten to this article is pretty representative of what's happened in the past (though usually it's unprovoked), so I can leave them here for others to peruse and make their own judgements, if they like. That being said, my articles do go through an editor. I also have multiple people read them before I publish. The folks I ran them past this time were either parents of children with mental illness or family of people with autism. None of them expressed any feelings of offense. I'm sure this struck a chord with the PANS/PANDAS community, and I appreciate them coming out to speak up. I'm sure you have all faced cynicism, naysaying, and invalidation. It should not surprise me that this is how my article would then be read by default, even if I didn't intend that. I AM generally a skeptical person, so I will accept that others read me as skeptical. At the same time, I hope the PANS/PANDAS folks will take a step back, consider that I did not write this to personally insult each and every one of them, and to consider why I would feel frustrated or skeptical. I have allowed room for similar feelings from your community in these comments.
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.
One other suggestion... I don't know exactly how old your son is, but I can only assume based on the kind of information you freely post about him on the blog posts I have read so far, that he is not a teen. A word of caution: the information you have shared about raising him, while appearing to be about YOU, is also VERY MUCH about him. Your child's anonymity and confidentiality is being wildly violated here, even though you don't give his full name. People who know you and him, know who you are talking about. I respect assert that you could inadvertently harm him as you share what you do on this blog. It would be different if you we're sharing it anonymously, or with a fake name and not posting your picture all over the thing. Keep in mind that it is permanently here now (because people can often access cached material even if you delete it, plus people can take screen shots and copy/paste stuff). Ypur son's future significant other, future college admissions officer and future boss may all have access to the fact that he has been admitted to a psych hospital. Does this not concern you? Once he becomes a teenager, I PROMISE YOU IT WILL CONCERN HIM! But it will be incredibly too late by then, I'm afraid. I am honestly astounded that you would so freely risk your child's privacy this way, especially being a social worker and understanding the importance of his confidentiality. Astounded.
I appreciate your concern. The difference between you and I, however, is that I am not ashamed of mental illness, and I see no shame in getting help for it. I would also never dream of discriminating against someone for having a mental illness. My son struggles with how others perceive him, certainly, but he has my unconditional love and the support of those who would not dare threaten him or make him feel little for what he's experienced. I hope you, too, will move about life understanding that a psychiatric hospitalization doesn't make a person lesser than you. I hope that, should you be an employer, this wouldn't be something you would ever discriminate against. I hope that, should you be raising teenagers, you would teach them to accept people at their face value and not belittle them for a mental illness. I certainly hope you are not using scare tactics to dissuade me from this conversation. I have had enough of that today, including people threatening (without merit) to have me lose my job. Threats immediately invalidate an argument. But, once again, if this is simple concern, thank you. I appreciate it.
Save your faux concern. There is nothing being posted here that has not been hugely beneficial to parents looking for a common experience. Go back to your PANDAS forum and stop attacking people with differing opinions.
Melissa, you've made a profoundly inaccurate assumption that I am ashamed of mental illness. I certainly am not. Nor would I ever discriminate because of it. I wouldn't have such a successful private counseling practice where people pay me out of pocket, if I did. But there is a reason why confidentiality is important. Just as you wouldn't likely want your mother broadcasting your private medical or mental health history on the internet, it would stand to reason that your son wouldn't. I have the utmost esteem for all of us parents who deal with mental illness in our kids, no matter what the cause. And by the way, you've made another false assumption about PANDAS parents, thinking that since we know there is a medical trigger causing the behavioral symptoms in our kids. You are saying that this means we are saying mental illness doesn't exist. I know hundreds of these parents and never has a SINGLE ONE OF THEM said that. Mental illness certainly DOES exist. It's causes may be varied and diverse, and science knows less about this than perhaps many other areas of medicine. There is no solid medical evidence that mental illness is caused by brain chemistry imbalances either. That is merely an educated guess as to why psychotropics work the way they do for some.
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.
My son is aware. You don't need to be concerned about him. You aren't his parent and you aren't providing him therapy. I'm not sure what happened to your other comment, but don't worry, everything else you wrote is available for others to view. Good luck with your practice, and best wishes to you and yours!
Neurologist, psychologist & psychaiatrist were treating my son with all kinds of psych medications & nothing was working. As a matter of fact it was making his symptoms worse & they increased significantly. They were at a loss what to do? Not one dr ruled out a medical problem until I brought my son to a pediatrician. She did a variety of test & test results indicated that he had mycoplasma pneumonia & an undiagnosed case of mononucleosis that he showed no physical signs of having! The antibodies from these infections attacked his brain causing inflammation which cause t his neuropsychological symptoms. My son was put on Azithromycin & within days his symptoms decreased considerably. So I believed it was psychological at first until the symptoms got worse until better.
That's right!!! To give kids a drug for a mental illness and the child gets on one after the other... trying to "fix" a mental illness... when... it's actually Lyme/mono/strep!!! Those psychiatric meds won't do a THiNG for a bacterial infection!!! This post is a disservice to SO many.?
Your article in factually incorrect. Every child deserves to be evaluated individually and get their own diagnosis. U r doing a diservice to doctors and sick children with ur inaccurate article.
It claims there is no research linking strep to mental illness. PATENTLY FALSE and dangerously misleading. Spend some time on the academic literature. There are links to it all over these comments. Don't be a sheep. Think critically and investigate the issue thoroughly before you come to a conclusion. Sometimes being wrong is the best way to learn and grow!
It also claims that there is no evidence that antibiotic treatments actually effectively treat the mental illness symptoms. Also PATENTLY FALSE.
Show your work. Please link to articles stating otherwise. Degree of difficulty: link to something that a licensed mental health professional would justify as a credible source of medically sound information. Most of the links I've seen tossed around here are tenuous at best.
https://iocdf.org/pandas/
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"?
My son's autism was also psychological according to the "best" hospitals MGH and the "best" neurologists. Turns out he had autoimmune encephalopathy induced by infection. He has since recovered. Something the mainstream doctors also told me was impossible.
I'm trying to wrap my head around your article stating there is no research linking strep to PANDAS and, in effect. doing the same thing to children with PANDAS/PANS that you are unhappy about being done to your child. You are denying the existence of a researched illness and spreading dangerous information that may prevent children from getting the proper diagnosis and treatment they so desperately need. I'm not trying to make my child's illness curable. I got him treatment and he got well. He would not be well now if I had not questioned why he was so suddenly different behaviorally. It's not my child's fault you take issue with parents trying to get to the bottom of their child's illness. My questioning brought my child relief and wellness. I find your statements incredibly selfish that you would wish other children's parents just accept a mental illness diagnosis rather than find the root cause of their illness and get proper treatment. Parents want their children well. Psychiatric medications and therapies do not work well in children with PANDAS/PANS. How about all parents stick together to support each other when their children are ill instead of spreading misinformation because you don't like it. I get exasperated having to explain my son has a medical illness that displays itself as psychiatric. How about being grateful others are interested in your child's well being and are doing what they can to feel helpful?
You provide no evidence that PANDAS and PANS (which you leave out in this article) do not exist. Researchers actually have found much evidence that PANS/PANDAS exists, so I suggest you do much more research. Researchers absolutely can relate strep and other infections to the criteria and the without a doubt can show that the correct treatment heals children with these syndromes. I am wondering how much research, good research you truly did. All this has nothing to do with wanting our children to fit into a curable condition as you state.. PANDAS and PANS comes with just as much stigma as MH issues and it is even more difficult to deal with, because unlike MH dx's this has psych symptoms as well as physical sx. I once did not totally buy into the PANDAS/PANS diagnoses. My daughter was 8 years old when sudden anxiety, irrational fears kicked in and when she started to have cognitive decline. Then severe depression. She started seeing a psych and began medications. Nothing worked, she got worse and worse and could barely function. She was diagnosed bipolar. Rages, meltdowns, mania, anxiety, depression, fears, ocd. Life was hell. Our psych (who actually is an expert in PANS) mentions PANS and PANDAS several times, I kept ignoring it because she did not fit all the criteria to an exact T. Then things just got so bad. So psych decided to do testing. Testing revealed multiple infections, Cunningham Panel was positive. Brain spect scan showed numerous areas of decreased perfusion. My once active, good student, happy girl, competitive figure skater plummeted into hell. She could not stay awake, could barely walk, had a myriad of physical and psych sx. Yup, could all have been attributed to MH dx's and she would have been heavily medicated and hospitalized. She never would have healed. But, our psych referred us to a great PANS/Lyme dr and now recovery has begun. For the first time her psych sx's have decreased. First time in 8 years. Why? Because infections and inflammation is being treated. Do you realize that treating PANS and PANDAS is so much more difficult than treating MH diagnoses? Do you think I would prefer a 600.00 out of pocket visit every 6 weeks over a 20.00 copay to see a psych? Are you aware how much research indicates that MH dx's actually are infection related? We certainly do not prefer our children to have this. We are not denying anything. We are parents who fight to get our children well. Who have been through hell and have watched our children go through hell and lose their lives to PANS and PANDAS. We fight the ignorance and doubting people like you everyday. You chose to believe you son is nothing buy a psych dx and that is your right. None of us are denying you that right. Don't deny us what we know is true and right. Most of us have not arrived at this dx for our children easily or lightly. We have seen numerous drs at one of the countries best hospitals. They all agree that yes she has a myriad of severe symptoms and a myriad of abnormal test results. Yet not one of them can give her a diagnosis. Yet, she has CDC positive Lyme tests, head to to bart marks, positive HHV and myco. She has had numerous illnesses. I spent an entire three months pouring over and sorting through psych and medical records and what I found astounded me. Her symptoms began right after a pneumonia (which I had never noticed). Every time her psych sx exacerbated it was either immediately before or after an illness. Her Lyme and bart sx started within days of getting the HPV vaccine. Your denial to explore other causes of your sons psych sx does an injustice to him. Failing to acknowledge the possibility is ignorant. Stating that PANS and PANDAS are not valid diagnoses is a slap in the face to all of us who know otherwise. You anger me more than I can ever possibly indicate. I hope that your son does well being treated with psych meds. There is always the chance that is is all psych and nothing else. But, to not explore further is like an outright refusal to do what is best for your son. Might my daughter have PANS and MH diagnoses...quite possible. I don't care either way as long as I can get her functioning the best she can. The evidence that it is more than just psych dx's is massive.
The NIMH has a great information page and a list of references at the bottom that are useful reading. I've met Dr Swedo and she feels that many children who are being diagnosed with PANDAS or PANS may actually have something else. The big factor for her is a SUDDEN onset of symptoms. https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml
Recent research and mouse models. I don't think Stanford, Columbia, and Georgetown U's would makes this up. Read here https://www.pandasppn.org/research-library/
I was very offended by your article also. You should be thankful that there are well-meaning mothers out there who are trying to help. My son went undiagnosed with PANDAS for 6 years because none of our many doctors that we went to knew of it. I had to eventually stumble onto it on my own. I only wish I had one of those mothers tell me about PANDAS. You don't want to leave any stone unturned. My son is doing very well after HD IVIG, a PANDAS treatment.
I don't think I've ever read an article by a parent who is fighting so hard FOR her child to be mentally ill. Wow. If you want to give up and have a mentally ill child at 3 years old (And not believe in any hope that it could be something else), then go for it! But, don't get on your pedestal and shame the rest of us for not settling for a lifetime of mental health hospitals, labels and anti-psychotic medicine.
Exactly right, Nikki! Maybe this mom just doesn't care that the root of all mental problems somehow, somewhere, is a medical issue. Maybe she feels she's not up to the challenge to try and figure out her child's underlying condition/conditions so she's perfectly content to call it mental illness...just don't make the rest of us, the ones willing to do anything to figure out why our children are exhibiting mental symptoms, brought on by a medical root cause, look like we're in the wrong! How dare you!
There is a significant difference between "fighting for her child to be mentally ill" and coming to terms with the diagnosis of a mental illness and trying to move forward, rather than accepting unlicensed and unqualified opinions at face value simply because they "know a person with this illness". Your post is disingenuous and more than a little insulting. You aren't rallying more people to your cause when you attempt to slander perfectly well-informed voices of dissent.