Onset occurred at age 5, almost 5.5, in September 2010, the Thursday of the second full week of school. He came off the bus that way, moving like electricity was running through him, afraid to sleep alone, with urinary frequency. Those symptoms were just the start, as more features (fight/flight anxiety, extreme sensory defensiveness, trouble swallowing, fear of vomiting, dilated pupils and light sensitivity) came on in unexpected waves throughout that year. He did have a “sore throat/cold” and pink eye summer 2010.
We saw many doctors over 18 months; we visited our family doctor, a pediatric urologist, ER doctors, 2 neurologists, psychotherapist, neuropsychologist, allergist, immunologist trying to get to the bottom of all the new symptoms. I was surprised at the ease with which some providers would want to prescribe big-ticket psych drugs without doing things like checking blood sugar or thyroid! He was eventually worked up for diabetes (negative) and other urinary disorders (also negative). As waves of more symptoms hit including, sudden sensory defensiveness, irrational and overwhelming fear of red lights, extreme perfectionism, declaring that he wished he were dead; we scurried from one specialist to another searching for help.
DIAGNOSIS & TREATMENT
We learned about PANDAS from co-workers familiar with Dr. Louise Kiessling's work in RI and from the April 2012 Parents Magazine article on PANDAS. One co-worker was listening to our struggles and ran in with the article saying it sounded just like what I had been describing. I read that article and wondered if the reporter had a spy-cam in my house. Our family doctor looked at the article and agreed that could be a possibility, checking his throat, sinuses, ears, perianal region and blood for strep. The throat culture was positive despite treatment for strep back in Jan-Feb. In April of 2012 with our family doctor, for his initial treatment for suspected PANDAS, he started a round of antibiotics (Pen V), receiving 3-10 day rounds totally about 4 weeks of antibiotics. We saw dramatic improvements 4 days in. No antibiotic = full relapse.
Drawn quickly and with ease on 3x3 inch scratch art paper day 4 of Penicillin treatment – his symptoms just stopped; and he was happy, energetic, and had his drawing fingers back! To us, they symbolize being the master of his own ship once again and feeling part of a happy, connected family.We found a PANS specialist in the area of immunology through online forums like Latitudes, Saving Sammy website/book, and asking for referrals when on the wait list for a different specialist.
While we were trying to qualify for the NIH study timeline of strep exposure and relapse, we reviewed medical records and school emails regarding urinary accidents, being terrified to go out the door, being late to school, challenges during the school day, suddenly unable to remember or write his numbers, etc. In doing so, we discovered clear patterns for exposures to other pathogens besides strep like bronchial infections or pneumonia. He would have good stretches lasting weeks in Kindergarten and 1st grade and then there were the stretches where we could scarcely go anywhere or do anything. Compiling those school emails, records for the whole family from urgent care centers and our family doctor coupled with the extensive blood work done with the specialist was a major help in improving treatment. More consistent and aggressive treatment since Sept 2012 cut panic attacks from 1-2 a day to 1 or less a month depending on time of year and allergies and illness exposure. Figuring out the role of Mycoplasma Pneumonia as a second trigger was huge because it was clear a second antibiotic was needed. Discovering and treating the active mycoplasma infections in the whole household solved chronic problems for all of us and provided more relief from PANS/PANDAS flare-ups.
Long term antibiotic treatment for strep and myco worked wonders. We had definite periods of remission although not as frequent and lengthy as we would wish. Prednisone stopped symptoms in their tracks. I never would have believed it would calm my child, help him sleep, and help him eat! Prednisone cut the inflammation, stopping the difficulty swallowing, the tics, ritualized movements, and the inability to sleep. Another big help was resolving his brother's chronic strep and ear infections by having his tonsils and adenoids removed. Furthermore, following diet changes such as GAPS and autoimmune/PALEO helped everyone feel improved and led us to discover that his brother was highly sensitive to gluten. Removing gluten in his brother’s diet contributed to a reduction in the recurrence of infections that our PANS child was exposed to by resolving his brother's chronic allergy symptoms that helped harbor infection.
He continued to have severe flare ups with exposures to infections and especially during allergy season. Using a prescription nasal allergy spray reduces the chronic inflammation that encourages infection. Benadryl helps but other allergy medicine causes adverse reactions with anxiety, attention, and impulsivity. Spring allergies are far worse than the fall allergies although he has both.
While prednisone would put the brakes on symptoms, it only lasted until the next infection or exposure. During spring 2014, eating 700-800 calories was a “good” day. Most days, we could scarcely get 500 calories into him. He would only use plastic utensils, eat food from a package, and there could be no wood (think tables and floors) in the area. We watched his weight drop from 50th percentile to 20th to 10th over a year and a half. With insurance rejections, and grandma's help, we went ahead and did self-pay for the $6,000 IVIG treatment. The severe anorexia was stopped in its tracks. Within 2 weeks, his sleep, bathing, and eating were restored. Over time, the sensory meltdowns stopped and he could brush his teeth normally after almost two years of being unable to tolerate the sensation, no matter how many rewards for trying. We could go out and have fun without multiple back up escape plans. He could ride his bike again with ease and learned to tie his shoes. During the 2014-15 school year, he had a series of intravenous immunoglobulin treatments. IVIG buys him more time in remission, but it's not a permanent cure. Subsequent flare-ups are less dark and deep and his sleeping, school attendance and sensory sensitivity have not been dragged down like before. In 2012, prior to steady PANDAS treatment a neuropsychological evaluation showed clear dysgraphia and math impairment. In 2015, the most recent evaluation showed no dysgraphia and math is no longer impaired but improving to the low average range. Perhaps the best thing to report is that he now considers school fun and had a very successful transition into 5th grade.
Traditional Therapy: Art Therapy, Cognitive Behavior Therapy (CBT), Tutoring, and OT. Therapies such as OT, CBT, and art therapy have been useful adjuncts to medical treatment although they can never stop a flare on their own. He has learned many calming techniques and ways of reframing his thinking, which is helpful for him to apply once medical interventions are providing relief from an exacerbation.
Integrative Medicine: omega 3s, special B complex, benadryl, Vit D, ibuprofen, probiotics, digestive enzymes. All supplements have been explored with the help of nutritionists and medical providers. Additional supports such as melatonin, gaba, and L-theanine have provided help along the way at various points in time. He has not been able to tolerate the oft-recommended 5-HTP.
Dietary Changes: clean diet (organic, no preservatives, dyes, GMOs, adding coconut flour and almond and flax milk to my cooking skills, homemade broth)
Family Being Treated: Lots of blood work for the whole family and subsequent treatment for strep and mycoplasma for family members with active infections. Treating the whole family for infections has been important to maintaining improvements for him.
Initially, two years after onset, he was on a 504 plan. His teachers and we as a family both sought an IEP for support in the area of math and sensory needs a year later. Having a school nurse knowledgeable about PANDAS and willing to work with the OT and student teachers has been a tremendous asset. Having special education teachers and a special education director aware of and learning more about PANDAS was another boon in maintaining him in an inclusive learning environment. Fortunately for him, the whole school is founded on the Responsive Classroom model, which provides a high, constant level of social emotional support for all students.
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