CBT (Cognitive behavioral therapy) and/or ERP (Exposure and Response Prevention) may be beneficial for a recovering PANDAS child. Medical interventions, such as antibiotics, IVIG, etc, are needed to lay a foundation for therapy to be introduced.
Currently, there is no research to support the use of short term steroids in PANDAS and PANS children, however, many families and providers have cited improvement with their use. Steroids likely reduce the inflammation occurring in the child’s brain.
Steroids are used in the treatment of other autoimmune disorders
Active infections need to be addressed with the use of steroids.
If tics are a symptom in the PANDAS or PANS child, discuss with your provider the pros and cons of using the steroid. Steroids have been known to worsen tics. It is for this reason, the NIMH does not currently list steroids in their treatment protocol for PANDAS and PANS.
TONSILLECTOMY and ADENOIDECTOMY
A tonsillectomy may be considered by an experienced ENT.
Some research has shown marked improvement post tonsillectomy, including full cessation of symptoms in some patients. This has been noted in both a 2008 case study and 2015 JAMA Case Series. If a full remission of symptoms does not take place immediately following the procedure, it does not mean the surgery will not have any benefits. Removing the tonsils should lower the chances of a person contracting strep. A child may also see a more gradual improvement post surgery.
New research by Drs. Earl Harley and Elizabeth Latimer (Georgetown Univ.) will be published early 2016 indicating careful use of this surgery can be very effective in arresting PANDAS/PANS symptoms.
If a tonsillectomy is considered, parent feedback has suggested a treatment course of antibiotics prior to surgery and antibiotics post surgery is beneficial. Requesting the tonsils be biopsied post surgery may also show whether strep, staph, or other bacteria was hiding in the tonsillar crypts.
Some children are advised to take an Omega 3 supplement because of its know positive effect on brain function. It is also known to reduce inflammation and reduce hyperactivity/increase focus in children with ADHD.
Ibuprofen is classified as a NSAID (nonsteroidal anti-inflammatory drug). Some families have noticed an easing of symptoms with Ibuprofen. Even though this easing of symptoms is just temporary, sometimes any reduction of symptoms (even short term) is welcomed. People may consider it a “bandaid”.
If a child does not show any improvement with Ibuprofen, this does NOT dismiss a possible PANDAS or PANS diagnosis.
Ibuprofen should only be given under the direction of a physician. Follow dosing guideline on the packaging. Ibuprofen should only be use for a short period of time. It should not be used in conjunction with steroids. Ibuprofen has been known to cause stomach issues.
Occasionally, when an antibiotic is eradicating the bad bacteria, it may also kill off “good bacteria” the gut needs. Probiotics help maintain the healthy gut bacteria. Probiotics should be taken a minimum 2 hours apart from an antibiotic.