In March 2016, MJ and Mike Keatts learned that their 10-year-old son, Aidan, has Pediatric Autoimmune Neuropsychiatric (PANS) Disorder; this diagnosis is in addition to autism and a mood disorder, which Aidan’s parents learned about when he was younger. His symptoms leading to the PANS diagnosis were uncontrollable movements/ticks, and extreme mood swings, rages and aggression.

Aidan had a cough in late 2015 that threw his immune system into overdrive. Rather than just fighting the infection, his immune system turned against him and began attacking his basal ganglia, the part of his brain that controls movements and emotions – that’s where the “Neuropsychiatric” part of PANS comes from.

Unfortunately, the waiting lists for doctors in Washington, D.C. and New Jersey who are leaders in the treatment of PANS and prescribe high-dose IVIG treatments are up to a year long. In addition, few insurance companies cover the cost of high-dose IVIG for the treatment of PANS. IVIG is short for intravenous immunoglobin, which is a blood product and part of our immune systems; although IVIG is an off-label treatment for PANS, it is known to be the most helpful for extreme cases.

In June, MJ and Mike sought out-of-network care from a PANS specialist in Florida.  Aidan’s PANS diagnosis and the need for high-dose IVIG to stop his immune system from attacking his brain were confirmed. In mid-July, Aidan received a high-dose IVIG infusion, which also was not covered by insurance.  After about a week, Aidan’s behaviors and movements began to slowly improve.

 Since mid-June, MJ and Mike have incurred just over $10,000 in travel costs, out-of-network doctor’s fees, lab fees, IVIG costs and charges associated with ongoing treatments.  These were all expenses that they were not prepared to incur. In addition, children with PANS can experience flares, and the lifespan of an IVIG treatment can end before enough healing has occurred in the brain. If other biomedical interventions are not sufficient, another IVIG treatment may be necessary – especially if the family’s safety is endangered by the child’s aggression and rages.

For those who know the Keatts family, you know how determined they are to win this battle.  While Aiden showed significant signs of recovery in the months after his initial treatment, he has recently begun to regress.  Mike and MJ are working with Aiden's dr's to determine the next steps, which will likely be another costly IVIG treatment for this family to incur once again.  This family has been through so much in the past year and their battle is far from over, we are hopeful that through continuing this awareness we can raise enough money to cover the out of pocket costs that the Keatts family has paid thus far as well as a cushion for their upcoming charges.    

Any donation would mean the world to this family.  If you are not able to make a donation at this time, our ask is simple, please pass this along and share the Keatts story to spread awareness of this disease.  The more who know, the more who can help fight this battle for all PANS/PANDAS victims.

Thank you for your consideration
-Friends of the Keatts Family