Obsessive compulsive disorder in children and child anxiety. Could there be anything more cruel and unfair? And now to a fascinating connection: PANDAS (not those cuddly bears).
Was visiting with a friend the other day, and we got to talking about her seven-year-old son. She shared they’d visited “Grant’s” psychotherapist several days before (Grant’s being treated for manifestations of cerebral palsy and a possible autistic spectrum disorder). When asked what was new, mom replied Grant experienced a sudden onset of obsessive compulsive disorder symptoms, along with tics and intense anxiety.
The very wise therapist asked if Grant had a bout with strep throat in the recent past. Mom’s curiosity and alarm piqued, as she realized he had – only a month prior. Upon the therapist’s suggestion, mom had Grant in front of his pediatrician that afternoon. And the doc suggested PANDAS may be on the scene.
PANDAS | Obsessive Compulsive Disorder in Children and Child Anxiety
So what’s up with PANDAS? Well, it’s an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. And it’s about children presenting with a rapid onset of obsessive compulsive disorder (OCD) and/or a tic disorder – all generated by a streptococcal infection (most commonly, strep throat – aka streptococcal pharyngitis).
In addition to the OCD and tic disorder symptoms, children may experience moodiness, irritability, intense generalized anxiety, separation anxiety, hyperactivity, inattention, sleep disturbance, joint pain, night-time bed-wetting and/or daytime urinary frequency, and fine/gross motor changes (e.g. changes in handwriting).
Children with PANDAS experience dramatic ups and downs when it comes to their OCD and/or tic severity. An increase in symptom severity usually lasts for at least several weeks, but could go on for months. The symptoms then seem to gradually fade away, a child often going a few weeks or several months without issues. But should another strep throat infection appear, the troubling symptoms return just as suddenly and dramatically as they did from the get-go.
What’s going on here? It looks like an initial autoimmune reaction to a specific type of streptococcal infection, which interferes with functioning in the brain’s basal ganglia (“thar she blows” to the left). No one knows for sure; however, a hot theory floating about suggests the involvement of a mechanism similar to that at play with the autoimmune disorder rheumatic fever – which is also triggered by a strep infection.
As you likely know, in the presence of a bacterial infection our bodies produce antibodies to attack the intruder. With rheumatic fever, the antibodies mistakenly recognize and attack the good guys – the heart valves, joints, and/or specific parts of the brain. This occurs because of cell wall protein similarities. And so it may be with PANDAS, only the anatomy in the wrong place at the wrong time are the basal ganglia – believed to be involved with voluntary motor control, procedural learning relating to habits, eye movements, and cognitive and emotional functioning.
Diagnostic Criteria
Unfortunately, there are no lab tests to diagnose PANDAS. So clinicians turn to the following diagnostic criteria…
- Presence of obsessive-compulsive disorder and/or a tic disorder
- Onset of symptoms from three-years to puberty
- Episodic course of symptom severity
- Association with group A beta-hemolytic streptococcal infection (a positive throat culture for strep or history of scarlet fever)
- Association with neurological abnormalities (restlessness, shaking, trembling, jerking and/or writhing movements, etc.)
For the record, if strep exists in conjunction with two or three OCD/tic episodes, PANDAS is a strong possibility.
Treatment
PANDAS treatment is the same as the treatment for any child enduring OCD or a tic disorder. So psychotherapy is a must, and meds may be indicated (be super-careful with that decision). The sooner the intervention commences, the better.
What about penicillin? No doubt, penicillin and other antibiotics destroy bacteria. However, as it goes with PANDAS, it seems antibodies produced by the body in response to the strep infection are the cause of the problem, not the bacteria. So, penicillin wouldn’t appear to be a viable treatment alternative. Research continues, however.
One other angle here. A controlled trial was conducted addressing the efficacy of plasma exchange (aka plasmapheresis) and immunoglobulin (IVIG) in the treatment of PANDAS. The results indicated both were effective for the treatment of severe strep-triggered OCD and tics. However, side effects and the risk of infection from such invasive procedures call for caution. Hence, these treatments are typically reserved for severely ill children. By the way, the National Institute of Mental Health is currently enrolling participants in an IVIG clinical trial for PANDAS.
It’s a Wrap
Obsessive compulsive disorder in children and child anxiety – I’ll say it again, could there be anything more cruel and unfair? But isn’t it gratifying that scientists are connecting cause, relief, and healing dots? And by the way, the dot connecting may well benefit adolescents and adults. Learn about immune mediated OCD.
PANDAS – so there you have it. And now you’re equipped to respond if it somehow comes knocking on your door.
Oh, almost forgot! For all sorts of information on PANDAS, check-out the P.A.N.D.A.S. Network.
55o+ Chipur articles on topics mood and anxiety disorders are ready for your eyeballs. I’m inviting you to check ’em out.
Well, that is certainly strange. I have never heard of that before. I guess it’s one more thing to worry about. Also, I’m the FIRST poster!
Well, I don’t know that you need to worry about it, Megan. Interesting info though, don’t you think? And, dang, how many more emotional/mental health disorders will be connected to “who’d have thunk it” causes in the future? As always, thank you for your visit and participation! Too bad I’m not offering a gift to the first commenter…
Bill
This reminds me, in a way, about the debate against vaccines and the fact that they cause or may cause Autism. Although they found that study to be biased and untrue in the end, it still gained a huge foothold in society. It seems to be one of these things that we barely understand. I’m assuming that because this is the first time I’d ever heard of this. I’m against medicating children. Even though I had Panic Disorder beginning at a young age, I can’t imagine my mother letting me control a vial of Xanax to keep myself for when the panic got really bad. Our brains continue growing into adulthood and I think that any changes made early on in the chemistry or working of the brain could be irreversible and dangerous. And, in my personal case, the pills don’t knock it out anyhow. It’s a hard dilemma to be in– especially if you have a child that is suffering.
I suspect it’ll be the first time many readers heard of PANDAS. I actually read about it several years ago. And, of course, this article was written as a result of a recent conversation with a friend. Amazing stuff, to be sure. And, again, what the future holds in terms of coming to understand the causes of the mood and anxiety disorders is absolutely mind-boggling. Just today I heard a piece on the radio about the potential role of copper in generating Alzheimer’s. Wild, just wild. By the way, I’m with you on psychotropics for children – generally speaking…
Bill
Interesting connection between PANDAS and strep throat infection. Important information for parents. It does seem so unfair, when kids have to suffer, but always hopeful when connections are discovered. Thank you, Bill.
Thanks for your visit and comment, Cathy. You know, the material may seem scientifically dry (unless you have a child in your life experiencing it). However, the larger point is, there are biochemical/anatomical connections being made re causes of the emotional/mental health disorders. And, yes, that’s hopeful. I’m so looking forward to what lies ahead – what’s to be revealed. My gut says there will be some eye-popping, amazing stuff. Even some “Ya’ gotta’ be kiddin’ me! We missed that?” revelations. Onward we go…
Bill
Man…just when you think you’re safe…our kids aren’t…I tell you, I’m wrecked though, Bill. I can’t help but wonder what else is going on with these kid’s diets and comorbidity factors/considerations. What suppresses the immune system for such an autoimmune syndrome to develop? I mean, streptococcus is part of the environment too…My god, I’m such an irrepressible, old country chiropractor…
Super provocative post for me…in that good way.
Crazy stuff, isn’t it, Herby? And great point – what is it (diet, environmental junk, etc.???) that’s interfering with the immune system? I sure don’t know, but I have a feeling there are going to be many jaw-dropping moments in response to some very scary discoveries in the years ahead. Thanks, as always, for your visit and comment…
Bill
Very interesting Bill I read about PANDAS several years ago however when I mentioned it to our family doctor I was told I was a nervous new mother. I noticed OCD and tics in my son after a severe Steep infection & still believe it related. Thanks for sharing your knowledge!
Yikes! Bums me out that a medical professional would shrug her/his shoulders in such a dismissive manner. Hmmm, either s/he didn’t know (and didn’t want to learn) or didn’t have the time to address your concerns. Either are upsetting. Here’s hoping you’re getting your son some help. Thank you for visiting and contributing, Shelley…
Bill
Hi, just read your post and have to say it was a refreshing read, particularly for someone like me who has a specialist appointment next week miles away from home for my 5 year old daughter who I strongly suspect has PANDAS. We are a year on from the date she woke up with tourettes – just like that overnight. She has obsessive thoughts, many fears and anxieties, sensory issues and a precursor of severe daytime urinary frequency which presents as a bladder infection but never is. We are just in the midst of a third exacerbation of symptoms in 12 months and this time I insisted her recent throat ‘virus’ was swabbed – and sure enough strep! I now know she had at least 3 strep throats last year that were untreated and diagnosed as viral. This is a terrible affliction on children and their entire families. I hope some good advice will prevail. My daughter is currently taking antibiotics which seemed to have put her in half-remission, so that is a sure clue. We are very scared but I will endeavour to look into everything including her diet and work on strengthening her immune system. Unfortunately my daughter had a difficult birth and suffered a bleed in her basil ganglia but has overcome many obstacles along the way. We were just getting to good territory and bam….along comes PANDAS. I have started praying for the first time in my life. I will keep you posted on any updates if this helps. Thanks for the information. – written in a factual light-hearted way. It lifted my spirits because all the other web info seems a little scary. Wish us luck….
Hi Nikki! Wanted to acknowledge your comment right away. Will be able to write more in a couple of hours, so stay tuned. Thank you for sharing with us. Bill
Hey Nikki!
I’m really glad you found the article helpful, and that it could serve as a beacon of light for you – your daughter and your family. Lord knows all of you could use all the comfort you can muster. You say you’re taking your daughter to a “specialist” next week. May I ask what the specialty is? Interesting – I was talking with my friend (the one mentioned in the article) last week. She shared the wonderful work she, her son, and his therapist are doing together. Just amazing in terms of creativity and results. In fact, mom told me she and her son have shared some very close – and fun – moments working their cognitive-behavioral “program.”
I sure hope you’ll come back and share with us as your circumstances unfold. And I wish you, your daughter, and family all of the very best. She’s very fortunate to have a loving and caring mother such as you. Thank you for visiting and contributing…
Bill
Hello,
Thanks for lovely message. The ‘specialist’ is a neurologist, not sure this is the right department (perhaps immunology?) but its a start. I am just grateful PANDAS is even being considered, as in England it is hard to find someone with any knowledge. A GP I saw recently has only ever heard of the black and white fluffy variety! I will keep your site updated with any useful information/treatment we discover in the hope it may help other families out there. Keep up the positive vibe!
Nikki
Hi Nikki!
Glad you replied. Well, heck, at least you’re starting with a clinician – that’s a good thing. Given your daughter’s tic presentation, as well as history of basal ganglia pathology, I think a neurologist is a fine choice. Interesting – I think there will come a time in the not too distant future when neurology and psychiatry will merge. Of course, you’ll want to carefully consider any proposed meds interventions. Hey! If you’d like, in time, I’d be willing to attempt to hook you up with my friend. Perhaps the two of you could assist each other in some manner. Just let me know – she’s pretty cool. Yes, please do update us, Nikki. And don’t hesitate to drop me a line at bill@chipur.com should you wish to communicate privately. Best to all of you, and we’ll be right here for you…
Bill
Hello Bill, Hey I love this website! Well, I’m a mum on a mission. Imagine how great it would be if PANDAS could be knocked out by diet, nutrition and exercise alone!! Who knows? The way I see it (may be wrong) is my daughter’s brain and body is already a primed target due to physical things going wrong at the start. Put that with the environmental toxins, chemicals we ingest and the viruses and bugs we live with….. I would love to keep the medication away from her (yet more toxins…?) but at the moment it’s a quality of life issue and we got to keep her as settled as possible so she can learn and join in at school. If anyone on here has any good advice re. autoimmunity solutions, please let me know. Thanks. Nikki.
You’re an excellent mum on an excellent and worthy mission. I’ll post on the Chipur Fan Page re autoimmunity solutions advice. https://www.facebook.com/pages/Chipur/128077027224478?ref=hl
Hang in there, Nikki. We’re all on your side…
Bill
Well, you may already have seen these links, but I thought I would share anyways:
http://www.lighthouse-press.com/LHP%20website%20downloads/PANDAS.pdf
This one is not PANDAS specific, and it is all herbal remedies, but you may be able to gather something of value if you read enough and see any commonalities with what your good common “mother sense” tells you might be good for your child: http://www.nativeremedies.com/ailment/autoimmune-disease-symptoms-info.html
This link takes you to the home page for an organization focusing specifically on autoimmune disease for children in Boston. There is a link at the bottom left that will allow you to send them an email and then they might be able to connect you with a specialist who has better resources related to PANDAS: http://www.4samara.org/who.html
I hope these might help you.
Nice touch, Patricia. Thank you for sharing the resources. Yep! That’s what Chipur’s about…
Bill
I will keep you and your daughter in my prayers for a good prognosis and thorough treatment, I know it is always frightening when your child is ill, and I am glad she has you to advocate for her. Take gentle care.
Dear Patricia,
Thank you so much for the comforting words.
Nikki
Pretty cool, Patricia. I love it when all band together and help each other!!!
Bill
Be sure to check-out this link! It’s all about PANDAS/PITAND/PANS Awareness Day…
http://pandasnetwork.org/awarenessday2013/