By Teresa Conrick
My daughter, Megan, age 26, had her first IVIG infusion two weeks ago. It has been a long road, YEARS getting here. Mostly it has been, “This is autism”, or “We don’t treat autism and immune problems.” It was EIGHT years ago that I first began to write about autism and PANDAS/PANS because Megan was so affected by behaviors that screamed from her gut and immune system. Her doctor, her brilliant and wonderful MAPS doctor, knew Meg’s immune system did not function properly from day 1 that we met. She has helped Meg immensely and has been key in our path to treating Meg’s PANS and immune abnormalities. Also, increasing numbers of parents know, as they also have children on the autism spectrum, who have behaviors and symptoms they suffer with every day. We parents, have witnessed our children exhibit neuropsychiatric behaviors and immune/autoimmune medical symptoms and are frantic to help them. Too many doctors and hospitals though, have dismissed us. Those who do take anyone with the “A” diagnosis, often are so inundated by distraught parents with their children, children who present with many symptoms that can appear complex, that the doctors end up turning down any new patients, as they have no time to see them all. More autism plus more immune issues minus enough doctors equals ===== a catastrophe.
For years, we have been making connections from our children to GI disease ; allergies ; infections ; mast cell dysfunction ; mitochondrial dysfunction; increased cytokines ; skewed B cells and T cells ; autoimmune encephalitis ; environmental assaults - like mercury; and immune, vaccination, and infection reactions (Great research article here , yet it’s another paper that has been retracted, as anytime vaccines are brought up - the paper is branded as “not acceptable;” ------ and this last one is a favorite research topic of mine, and a most important one as we discuss the immune system, is the increasing microbiome abnormalities in autism . Facts are facts and the truth is --- many on the autism spectrum have immune systems that are malfunctioning. Meg’s started when she was young but some parents report that their child’s behaviors went from ok to alarming well into puberty and beyond. The hint of PANS or PANDAS went full throttle as OCD, perseveration, eating issues, anxiety, agitation, school refusal, and many more, took over. If you hear a doctor tell you, “Well, that is simply autism,” turn your back on them and leave. You are correct. Autoimmune Encephalopathy may be a more medically appropriate diagnosis for what is happening on the autism spectrum. Immune testing, GI testing, allergy testing and more needs to happen. Something IS wrong and your child deserves better medical care. Shame on any doctor who will not help that child. Be leery too, if you are only told to take them to a psychiatrist for an SSRI, for example, as that can worsen these effects, unless the doctor is aware of the research on PANS and autism.
The PANS patients in this study had commonly been treated with antibiotic (N = 675), anti-inflammatory (N = 437), and/or psychotropic therapy (N = 378). Response to antibiotic treatment was best when treatment was relatively aggressive, with broad-spectrum antibiotics and courses of >30 days generally producing the best results (i.e., up to 52% of patients achieving a ‘‘very effective’’ response)...Intravenous immunoglobulin (IVIG) had been used to treat PANS in 193 (28%) of the patients and was at least ‘‘somewhat effective’’ for 89%, although for 18% of these, the effect was not sustained. The highest rate of sustained response to IVIG treatment was seen in immune-deficient patients who received doses of at least 0.8 g/kg IVIG on a regular basis. Psychotropic medications, most commonly SSRIs (38% reported a trial), were commonly employed, but were often ineffective...Among the PANS patients represented in this study, relatively aggressive treatment courses targeted at eradicating infection and modulating the inflammatory response appeared to provide the best caregiver-reported therapeutic results, and to be generally well tolerated…….
Since I started discussing Megan and her many health issues ten years ago , I have met so many devoted parents who see the same issues in their children. One of them, a brilliant and caring mother, who I have friended from both AoA and FB, I must thank here, (THANK YOU!) as her advice and trailblazing helped orchestrate Megan’s new, added diagnosis, Nonfamilial Hypogammaglobulinemia , a non inherited condition:
Hypogammaglobulinemia is a problem with the immune system that prevents it from making enough antibodies called immunoglobulins. Antibodies are proteins that help your body recognize and fight off foreign invaders like bacteria, viruses, and fungi.
Without enough antibodies, you’re more likely to get infections. People with hypogammaglobulinemia can more easily catch pneumonia, meningitis, and other infections that a healthy immune system would normally protect against. These infections can damage organs and lead to potentially serious complications.
My thanks to all who have personally helped me and to those who are helping the ever increasing children who have an autism diagnosis and disabling immune dysfunction. Whether it is research or medically treating the children, history can be changed.