Jacqui Arnot

Who is Aksel? For those of you who don't know him, Aksel is a sixth grade student in San Rafael, CA. He's passionate about soccer, great white sharks, Lego and electronica.

Aksel has contracted a rare autoimmune disease known as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep). Health insurance companies still don't recognize it and will not help with the cost. 

We have been living with PANDAS since October 2013. It started out as anorexia. He was dangerously thin but never stopped playing competitive soccer. His pediatrician recommended a psychiatrist who prescribed him SSRIs. He gained the weight back, but displayed adverse reaction to the medication. Then he developed OCD.

It was really by accident that I discovered an article on PANDAS in an online OCD support group. The symptoms were all there! I brought him back to his pediatrician -- who has been amazingly supportive and open-minded throughout the process -- and the strep test came back POSITIVE even though he had not complained of any strep-like symptoms.

I spent every free minute evenings and weekends researching PANDAS and discovered the Stanford Lucille Packard Children’s Hospital PANS/PANDAS clinic. Back in March 2014 I put him on the waiting list. After 6 months, his first appointment was Sept 23!

The PANDAS symptoms include 

•Debilitating, migraine-like headaches. He cries himself to sleep some nights. 

•He also complains of joint pain. 

•He enters into very dark moods at times. Once he goes down that rabbit hole it is impossible to reason with him. His whole face changes and he becomes another person. Not the Aksel I know.

•Tourettes-like symptoms: repeating the same thing over hundreds of times a day. (In Aksel’s case it’s: “I love you mom!” – sweet soul that he is.)

•Really the worst symptom is the OCD which stops him from participating in activities that most 10 year olds relish: he can’t enter large establishments like stadiums, restaurants, malls, movie theaters. Since June we have been staying close to home. Just this week he announced he wants to quit soccer which has been his greatest passion for the last 3 years… 

•His diet – even before I put him on a gluten-free diet – is restricted to organic, GMO free, preservative-free, sugar free foods. He will eat seafood as long as it’s not farmed or color-added. He won’t eat pizza or cake (or anything that his friends eat) which makes socializing difficult.

It was a long, lonely summer for Aksel, Jasper and me.

The reason for the seeming “psychiatric” symptoms is that there is a strep infection in his body. In layman’s terms: there are antibodies put into play by the infection, but in PANDAS victims, instead of attacking the infection they go after the healthy tissue of the basal ganglia in the brain. Thus the strange behavior described above.

Despite everything Aksel is going through, we are still comparatively lucky. He has never missed a day of school due to PANDAS. His grades have not suffered. His concentration is good. Up until the beginning of Sept '14 when he announced he was quitting, he was a mentor on his soccer team. If you didn't know him better, you wouldn't be able to tell that he was "sick." He has a highly functional form of the disease. Hopefully, we caught it in time. To those of us who know him, he is profoundly changed. We want to help him get back to himself: the cheerful, happy, smiling boy that we used to know...

I have been managing to pay the bills on my single mom’s salary, living from paycheck to paycheck, but I’m not sure how I’m going to handle these new medical expenses.

I have a $4K in-network deductible which I've already reached. An $8K out-of-network deductible which I will easily reach at the new clinic and then the recommended IVIG therapy (hemoglobin replacement) costs $10K per treatment. Most PANDAS patients need 2-3 treatments.

Help get Aksel back! Help raise PANDAS awareness!

I am happy to talk to anyone who wants more information or who thinks they may know someone who suffers from this disorder.

Thanks for your help!

Jacqui