TOPIC
Pediatric autoimmune neuropsychiatric disorders associated with streptococcus (PANDAS) describe a subset of childhood obsessive-compulsive disorders (OCD) and tic disorders triggered by group-A ß-hemolytic Streptococcus pyogenes (GABHS) infection.
PANDAS Diagnostic Criteria
- The presence of OCD or a tic disorder or both
- Pediatric onset
- Episodic course of symptom severity with abrupt onset or dramatic symptom exacerbations
- Temporal association with GABHS infection
- Association with neurological abnormalities during symptom exacerbations
Debates exist with PANDAS and PANS, but that does not help parents or ill children now.
PANS
PANS allows for other possible infections, such as Borrelia Burgdorferi (Lyme), Herpes Simplex Virus, Varicella zoster [18], HIV, Mycoplasma pneumonia [19], and was also associated with reported common cold. I would add Bartonella, which is in a large percent of humans in most nations.
Complexity of Patient SS – In a Few Sentences
During a hospitalization these allowed him to be discharged.
He needed to be hospitalized and was eventually discharged on fluvoxamine 100 mg daily [blood level?], clomipramine 100 mg daily [blood level?], lamotrigine 150 mg daily, aripiprazole 7 mg daily, azithromycin 250 mg three times daily [this is over routine dosing of six pills in five days].
In the hospital he improved and was discharged home.
After a few months, SS decompensated and was hospitalized. He tested positive for Strep, and his ASO titer was elevated to 3,200 IU/mL.
Treatment this time included IVIG, clindamycin, switch of aripiprazole to lurasidone due to lack of benefit on aripiprazole, and continuation of his other home medications.
His parents noted that SS started to improve following this admission, and upon return home he was able to do homework and have play dates with friends.
Again, about a month later, SS regressed with suicidal ideation and an attempt to jump down the stairs. He was treated at home during this event and was sedated with lorazepam 2 mg, olanzapine 5 mg. He began to receive outpatient IVIG after this event and lurasidone was stopped due to lack of sustained benefit.
The next month, SS had his tonsils and adenoids removed. Clomipramine was discontinued. He improved significantly after tonsillectomy and adenoidectomy.
Transcranial Magnetic Stimulation (TMS) was tried but discontinued due to irritability, which can be a side-effect. [See my exceptional book that discussed the best TMS, i.e., SAINT rapid TMS in Destroy Depression: Return to Joy.]
In the months that followed many types of treatments were tried. Typically over starting doses I would use. He had side-effect periods on most treatments, or no clear help was visible to parents.
Current Status
Despite the high scores on the symptom scales, high depression, high anxiety, low attention, irritability, SS has maintained his ability to stay in school full time, has not had recurrence of self-harming behaviors, and has not had rehospitalizations.
He returned to playing soccer and has been maintaining friendships.
In the setting of waxing–waning symptomatology with no perceived benefit from numerous psychopharmacological treatments and with concern for increased irritability on most of these treatments, the family has opted to keep him off psychotropic medications.
Physicians’ Final Observations on PANDAS Treatment
“Our case illustrates the difficulties in determining the best course of treatment when symptoms remain severe, debilitating, and treatment-resistant.
Many treatments provided did not align with current evidence, which raises the question: at what point should there be no further attempts at treatment?
Evidence-based medicine suggests that treatments should have stopped at TCAs, SSRIs, and psychotherapy. In our case, when faced with a patient with extended periods of inpatient hospitalization with recurrent self-harming behaviors, we decided that the potential benefits of trying different treatment options outweighed the potential risks.
This risk-benefit analysis should be made jointly with the family for pediatric patients and providers and should include considerations of symptom burden, level of functional impairment, expected developmental disruptions, natural disease course, tolerance of side effects, and cost.”
James Schaller’s Experience and Research
My colleague shows the complexity of all PANS and PANDAS youth. I have treated anyone the same way twice. The responses were always unique. Sometimes A, C, and G worked, and another patient was helped by F, K, and R.
Forget fast cures.
There are no #1 experts since there is not enough research proving clear guidance.
Raising these children requires immense patience. And more patience. And some things will eventually help.
Reference
Wang M, Ricardi R, Ritfeld GJ. PANDAS, a series of difficult decisions: a case report. BMC Psychiatry. 2024 Oct 24;24(1):730. doi: 10.1186/s12888-024-06180-6. PMID: 39448979; PMCID: PMC11515437.