Many Doctors. Many Treatments: The long winding road of PANDAS from IVIG to PEX to Rituximab to Helminths
PANDAS diagnosis for two children
The summer of 2010 we moved from Chicago to NC. Days before we moved I had a doctor’s appointment scheduled to have Charlie’s kindergarten physical. That day he received 4 shots, chicken pox, polio, DTap and MMR. Shortly after, things got very dark. Rages that would last for hours and end in crying, begging us for help. Days filled with screaming, crying, kicking, spitting, biting. He lost eye contact. He would no longer let us touch him. He started to wet himself and the bed despite being potty trained for almost 3 years. He became obsessive. He became sensory deregulated; he stopped wearing clothes because he couldn’t stand the feeling of anything touching his body. He could once write his name as well as any 5 year olds, maybe better. That disappeared and he was barely capable of a creating a scribble. He started to have throat-clearing tics. He would cover his ears constantly because he couldn't stand noise; it would make him irritable and angry. He would have meltdowns every time we were in the car, screaming and kicking my chair while I was trying to drive. He stopped playing with other kids. He would stand, all alone in his own world on the playground. He stopped telling us he loved us. Our little boy was gone. While searching for answers, professionals told us everything from this is a reaction to our move over the summer, to bipolar disorder, to oppositional defiance disorder to finally Aspergers. I knew this wasn’t Aspergers, I would have seen signs before age 5. I fought the diagnosis but not without resistance. I was treated like a mother in denial even though I was anything but. After months of searching for answers we finally discovered PANDAS.
We found a PANDAS specialist’s website. When reading the criteria it almost fit Maddie more than Charlie. We made an appointment and flew both of them back to Chicago from where we had just moved. He diagnosed both Maddie and Charlie in November of 2010. Charlie’s symptoms are obviously what led us to PANDAS, but the doctors said Maddie was actually more of a textbook case. Maddie had chronic strep from the age 3 on. Several bouts of walking pneumonia, coxsackie, sinus infections and finally post strep psoriasis which led to having her tonsils out when she was 8. Unfortunately, this didn’t stop the strep; she continued to get it in other places of her body. She had increased anxiety and OCD but no one ever put two and two together. She had irrational fears, would constantly tap things, chewed her sleeve until it would disintegrate, would obsess over all sorts of things and had transient tics. Anytime we addressed her OCD/anxiety with the pediatrician it was dismissed as a phase or a predisposition to anxiety. He told us if the OCD didn’t interfere with school, sleep or friends it was nothing to worry about. So I trusted him. Maddie wasn’t diagnosed with PANDAS until age 9.
IVIG heals Charlie but not Maddie
We tried IVIG for both Maddie and Charlie. IVIG was a miracle for Charlie nearly all his symptoms disappeared. Unfortunately, IVIG never really made a difference for Maddie. At this point her OCD was becoming unmanageable. She could no longer concentrate in school. The OCD occupied so much of her brain she became incapable of friendships. She couldn’t fall asleep and/ or stay asleep because her intrusive thoughts became so intense. These are three of benchmarks our pediatrician told us to look for. But because IVIG had no real impact on her symptoms, doctors (non-PANDAS of course) were even more convinced her OCD was “psychiatric” (which I always put in quotes because I now know there is really no such thing). But all agreed her symptoms needed intervention. After months of CBT and Zoloft, Maddie’s OCD continued to get worse.
Maddie’s Sudden Acute Change
It was the beginning of 6th grade when Maddie drastically changed. She became psychotic. She would have severe bouts of OCD that came on like a tsunami followed by fits of rage that would last for hours. Screaming, kicking, pulling out chunks of hair, violence, self-harm, the list is endless. The sweet, loving, happy, outgoing smart little girl we knew for 11 years was gone. Everything in our world went black. Up to this point her OCD revolved around dying, mostly cancer. This fear soon morphed into something completely psychotic. In her mind eating would equal fat and fat equaled unhealthy and unhealthy equaled dying. This is the only way I could make sense of her completely irrational thinking. She stopped eating and drinking. She stopped bathing in fear that her body would absorb the water and cause her to gain weight. She thought her hair made her look fat so every day she pulled her hair back into a ponytail so tight she started to go bald. She would randomly cut pieces of hair off she didn’t like. It spun out of control so fast we didn’t even know what hit us. Her weight dropped so low, so fast we were forced to hospitalize her. She went into inpatient care at a major university Hospital in the south shortly after her 12th birthday. The hospital didn’t separate children from adults so Maddie, who was still very much a child, was mixed in with chronically ill adults who all had a myriad of lifelong problems. No judgment, just not an experience a child should ever have to face. The treatment was awful. No one would listen. If we ever even suggested this was an autoimmune issue the doctors would literally pretend they couldn’t hear us. They told us they wouldn’t admit her unless we agreed to take her off all antibiotics. They also told us going forward we were not to mention the word PANDAS and accept that this is an eating disorder and that is the way it would be treated. This was all happening around the same time Elizabeth Wray was taken from her parents by Boston Children’s. Maddie’s case mirrored Elizabeth’s so to say we were scared is a gross understatement. I was supposed to accept that my 11 year old had just “gone crazy” and that is just the way it is. The doctors, of course, backed us into a corner with psych meds. We knew we couldn’t refuse, all the while knowing these drugs would make matters much, much worse. They put her on Luvox, which of course made her worse but the doctors insisted she was making progress. I always wondered if we were talking about the same child. The hospital managed to get Maddie weight restored with the constant threat of tubing her but all the while her mental state was deteriorating. When Maddie had psychotic meltdowns the nurses locked her in a metal room alone as she was banging on the door begging for help. No one notified us this happened until Maddie told us after the fact. I naturally addressed it with the head psychiatrist as soon as I found out. She lied and told me she contacted us and I approved of the “isolation room”. As if we would ever agree to have our extremely sick child locked in a room scared to death begging for help. This was disgusting and heartbreaking to say the least. When trying to articulate to friends and family what I was going through I would describe it like I was in a terrifying dream trying to scream for help but nothing would come out of my mouth, I had no voice.
I felt as if I was mourning the death of my child. Maddie as I knew her was gone but in return I got this child I did not recognize. No one was listening; no one wanted to help. We were alone and scared and not a day went by I didn’t sob uncontrollably.
Next Steps - Autoimmune Encephalitis, IVIG, PEX
After we got Maddie out of the hospital, a leading Hospital with an Autoimmune Encephalitis clinic agreed to take her as a patient in their AE clinic. They believed she had Hashimoto’s encephalitis, I didn’t but at that point I didn’t care what they called it as long as they acknowledged this wasn’t “psychiatric”. They immediately started IV steroid treatments. We would get 3 days of extreme explosive crazy and then 3 days of good and then back to baseline. It wasn’t sustainable. We finally told the doctors we wanted to stop steroids; the good was not outweighing the bad. They refused to go further with treatment until we got a second opinion. In the midst of all this Jim got a job in NYC so we were moving to NJ.
Onward we marched to a Neurologist specialized in Autoimmune Encephalitis at a leading hospital in New York City. He confirmed this was PANDAS. Started IVIG right away. Again, IVIG did not help much. The anorexia was getting worse; it was so severe that this Neurologist ordered emergency Plasmapheresis (PEX). We spent 8 days at the NYC hospital. The worst 8 days of my life. We shared a room with 3 other families. Maddie didn’t eat or drink one thing the entire 8 days. Because she had a tunneled catheter surgically implanted into a main vein in her neck there was no way they could tube Maddie to feed her. The Ng tube would involve restraint, as there was no way Maddie would agree. They simply could not risk it. The staff there didn’t understand PANDAS at all. She was on the pediatric floor and the nurses were not at all familiar with psych patients. They treated her as psych patients are often treated, with no respect and zero compassion. It was a real eye opener. The Neurologist admitted Maddie without insurance pre approval and sent her to the pediatric floor. Pediatrics said she was a psych patient and they didn’t want to deal with her. Billing was coming at me telling me the PEX wouldn’t be covered. It became a bureaucratic nightmare and we were kicked out before Maddie’s PEX treatments were finished, one more roadblock. He said she needed Rituximab but said his hands were tied because he didn’t have the support of the hospital. And so yet another doctor dropped us.
Again, onward we marched to at PANDAS specialist and Pediatric Neurologist, who also agreed Maddie, needed Rituximab right away. We did Rituximab and within weeks of finishing all of the treatments the psychosis started to abate. We were slowly getting glimpses of our little girl again. Odd behaviors started to dissipate. The ponytail came out. She started to shower. Maddie was able to interact again.
Eating Disorder Returns
After missing all of 7th grade, she went back to school and got A’s and B’s. I never thought I would see the day she would walk through the doors of a school again let alone make the honor roll. I felt hope for the first time in years. As time went on we had hoped all the psychotic behaviors, rages and the OCD around eating would disappear as well. The OCD had such a tight grip, it wouldn’t budge and nor would her eating. After being in school for 3 months we had to hospitalize Maddie once again to treat the anorexia. This time we sent her to a hospital in Virginia. She was inpatient for 6 months. She spent Christmas, Easter and her 14th birthday in the hospital. While they didn’t necessarily treat PANDAS they believed in it and were willing to work with us. It wasn’t easy but we managed to dodge psych meds and flu shots. We were relieved that this was a children’s hospital so this time she would not be mixed in with adults. However, even though these were technically children many of them had very adult problems. Many kids in foster care, rape victims and several kids from really sad, tragic backgrounds. Again, not what you hope for your child to experience but I had to find the silver lining in all of this. Maddie saw and experienced things that have made her mature beyond her years. She has gone through more in her 14 years than most will in a lifetime. This experience has made her strong, resilient and more insightful than most adults my age.
Helminths & Integrative Medicine
The anticipation of Maddie coming home had us filled with mixed emotions. While we were so happy and relieved to have her home, at the same time we were terrified of what was to come. Would the starvation start all over again? We started to see an Integrative Medicine Pediatrician as soon as we could. She started her on supplements and told us about Helminths. She told us to read about it and think it over for a while. We knew we didn’t even need 5 minutes to decide. We were willing to try anything. We had severe PTSD and were terrified the starvation would start all over again. We started Maddie on Helminths 4 months ago and started to see improvement almost right away. It is the first treatment to date that has made a dent in her OCD and anxiety. She is able to function again. It can be very up and down depending on what she is exposed to but there is definitely marked improvement.
Things are certainly nowhere near perfect but when we pause and compare it to where we were 2 years ago, we are so grateful. After being out of school for almost 2 years Maddie went back to school and made the honor roll again. She is coming to the end of 8th grade and will graduate and go on to high school. Something I never thought would be possible. We don’t know that life will ever be the same but we have accepted the new normal. The new normal includes knowing things could fall apart at any moment. The new normal means constant medical attention. The new normal is being Maddie’s only real advocates. The new normal includes living minute-to-minute. Expect the worst and hope for the best. Always on guard but we can finally breathe again. With the combination of Rituximab and Helminths we have gotten our daughter back. A new version of who she was but at least, we once again, have hope for the potential of what she can become. This illness has been nothing short of a nightmare but has made us better people. It has taught us patience, compassion, understanding and the will to fight. We will never stop fighting for our kids, ever. We are parents on a mission.
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