They say that when your child has PANS/PANDAS that you often remember the exact moment something changed. For our oldest son, Neely, that “moment of change” happened in front of Dumbo in Fantasyland, he was six (first grade). As I stood there with our two-year-old in the stroller and crying and pregnant with our third child – a stranger walked up and said “you know that’s not normal, you need to do something about that.”
It would be two more long year before we first heard the words – PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) or PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). Turns out his initial onset was between the ages of three and five. However, he wasn’t diagnosed until the age of 8. After the incident at Disney, he continued to decline, we went to the pediatrician, then a psychiatrist, he was diagnosed with ADHD. We began seeing another doctor who specialized in ADHD types of meds and the side effects. Over the next two years we tried all types of meds and he was eventually diagnosed with a mood disorder and then hints of the possibility of bipolar disorder began to be mentioned.
By the beginning of third grade he was raging daily, he had major school anxiety, getting him to do anything was impossible, he was irritable and disagreeable all the time. The school was calling daily for me to come pick him up. He was also having separation anxiety, tics and OCD behaviors, however we didn’t recognize those things as what they were. All the while this child was sick – ALL THE TIME!
In September of 2013 while at a doctor’s appointment with the doctor that handled his ADHD meds and going over all the ways the drugs weren’t working, the rage and behavior and in passing I mentioned him having strep. The doctor said “wait, I may know what’s going on!” It was then we heard the term PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) for the first time.
Over the next week we began researching, having blood tests, etc. We discovered that we weren’t only dealing with strep but that our son had an acute MONO infection, as well high mycoplasma levels. We also discovered that Neely had EVERY PANDAS symptom except for food restriction.
As we began researching we realized that our daughter, Lucy, also had many of the symptoms as well and that they had started when she had pneumonia 6 months before, got better after 2 months of antibiotics, then she had strep immediately after her brother and her symptoms had come and gone. She was four at the time and had gone from this angelic child to a screaming, irrational mess all the time. She was also showing signs of OCD, potty accidents, not sleeping.
The initial doctor who suggested PANDAS referred us to a “PANDAS friendly” pediatrician who began treating Neely with antibiotics and suggested we contact a PANDAS specialist in Chicago. However, the initial phone conference would be $500. That was a lot of money for us. So as we waited and tried to come up with the money he continued to get worse… we continued to research and began piecing together his behaviors in conjunction with his illnesses (and he was sick ALL the time).
By November our daughter was sick again and we began running similar blood work for her and found she also had high strep and mycolplasma levels. She had a few positive Lyme bands as well. We also began to treat her with antibiotics. We saw huge behavior improvements with her with the antibiotics.
Neely was still struggling and we were not seeing vast improvement with the antibiotics as the MONO was playing such a big part. By December Neely was on stimulants, non-stimulants, anti-depressants, anti-psychotics and incontinence meds – he was 8 – and still raging daily! In early January of 2014 during a rage he began looking for a knife so that he could. “murder himself”. At that point I said “that’s it, I don’t care how we do it, we have to go to Chicago for treatment!”
My parents offered to loan us the money ($16,000 for trip, treatment, flights, food, etc) to take Neely to Chicago for a two-day IVIG infusion with a PANDAS specialist as we planned a fundraiser to come up with the money to reimburse them So on his ninth birthday, in Chicago, Neely had his first IVIG infusion. Within a few weeks we began to see some improvements, the rages got fewer and fewer and within 4 months he was off all the meds except for still weaning off the anti-depressants. He wasn’t 100% but he was so much better. He of course was still on antibiotics as PANDAS kids are most often all on long-term prophylactic antibiotics.
He did well through the summer, however when school started he got strep (even on antibiotics) and began to regress. At the suggestion of the PANDAS specialist we headed back to Chicago in December of 2014 for another IVIG infusion (that was another $16,000 in nine month period). Within 3 weeks of being home, he again had strep and within 3 weeks of strep got the flu. All that set him back a bit, and it took several months to see the changes we were hoping for with the treatment. We eventually put him back on ADHD meds because that struggle was very real. He missed 55 days of 4th grade and was on hospital homebound. Finally, by summer he was doing well and had a wonderful 5th grade year. However, in the meantime…
Our daughter, Lucy was really struggling with OCD, incontinence, rage, separation anxiety, etc…. And we began seeing symptoms in our youngest son, William. However, many of these behaviors are hard to decipher between normal 2 year old behavior and what could be symptoms.
Over 2015 as Neely was improved, Lucy and Will’s health and behavior declined. Every allergy, illness, etc turned our household upside down. It’s one thing to have 3 physically sick kids, it’s a whole other level to add the neuropsychiatric symptoms of PANDAS/PANS on top of that. As well, the financial burden (we filed bankruptcy) our families face for co-pays, supplements, meds, and of course the things insurance doesn’t cover) and for us that was x3.
In the summer of July 2015, the pediatrician wanted to try taking Lucy (age six at the time) off her antibiotics for a couple of weeks after being on them for 2 years. The results were not good – all types of symptoms came back from stuttering, not sleeping, OCD – taking showers constantly, asking me several times a day to clean the toilet, needing constant reassurance that we loved her, major sensory issues, incontinence, tics, etc. By the end of the two weeks she was running a fever and then baby brother Will tested positive for strep during that time. She went back on antibiotics and over the next few months improved but we never got her back to where she was before going off the antibiotics.
Then in October of 2015, literally overnight, Lucy’s OCD and separation anxiety went into overload. She couldn’t be in a room alone, not even to go to the restroom. Even in the room with you she had to be touching you. She was having overwhelming intrusive thoughts, I would sit and hold her and rock her and try to soothe her. We began taking her to the psychologist as well (Neely was already going) for therapy. This helped some and after several weeks and new meds she began to get better.
We began to ask the pediatrician for more in depth testing for Lucy and for Will. Although, this pediatrician is an excellent “PANDAS friendly” doctor, we weren’t getting what we needed for the kids as far as testing was going. Their cases were getting complicated and she wanted us to defer to the doctor in Chicago. However, the two youngest weren’t patients of his and the cost wasn’t something we could incur at that point. Plus, these PANDAS specialist spread throughout the
country aren’t set up to take care of the everyday needs of your child, they are for children like Neely who are in an acute stage and need immediate help.
After some of the testing Lucy was diagnosed with Sensory Processing Disorder and Proximal Muscle Weakness and Will with sensory processing disorder and Mixed Developmental Delay. And did I mention, one or all of them were sick all the time?
We began looking into a test called the Cunningham Panel (The Cunningham PanelTM can help identify the level of autoimmune antibodies and the capability they have to stimulate and trigger neurologic behavior) from Moleculera labs which opened in 2013 to help investigate PANDAS/PANS. However, once again, this was not going to be something insurance covered. It was going to cost $952 a piece. We didn’t need the test for Neely, but felt we needed it for Lucy and especially Will. However, we didn’t have an extra $2,000 sitting around.
We began to move forward with the testing but our pediatrician recommended we reach out to another local “PANDAS friendly” pediatrician as they had more experience with the testing . So in the fall of 2015 we ended up switching pediatricians and began more in depth bloodwork for all three kids. Lucy was still struggling greatly, Neely was doing “okay” and Will had strep several times and we would see his behavior deteriorate, he also had a “sniffing” tic. He had constant dilated pupils and potty accidents.
After many tests, etc. It was determined that Lucy had extremely high mycoplasma levels and was positive for Lyme disease as well as low immune levels. So she began new antibiotics and supplements to treat both and within a few months we saw great improvement. She was also diagnosed with CVID (common variable immunodeficiency.) Neely was also was also diagnosed with CVID (common variable immunodeficiency) positive for Lyme disease, had high mycoplasma and continued (continues) to have low immune levels. However, he was holding his own and doing well (on 2 high prophylactic doses of antibiotics).
Will tested positive for one Lyme band but also had high mycoplasma levels and low immune levels, etc. was also diagnosed with CVID (common variable immunodeficiency.) Then in February (while on prophylactic antibiotics) Will got strep. Strep that continued non- stop from February until June (despite being on three antibiotics at times). As soon as we would stop one, he would test positive again. He was wild beyond control, had dilated pupils, potty accidents, tics, cursing, etc. But never once ran a fever or complained of a sore throat. In June of 2016 we had his tonsils removed to try and eradicate the strep. After that, we began to see improvements.
All this lead us to seeing an immunologist, more testing, more fighting with insurance for coverage, more money and kids who are still struggling.
WHERE WE ARE NOW
After insurance denial for IVIG for Common Variable Immunodeficiency in June of 2016, Cigna insisted on a pneumococcal vaccine to try and get approval. This vaccine sent Neely’s already struggling immune system into a tailspin and he began getting sick every two weeks. In December 2016 he got haemophilus influenzae (a bacterial infection), ended up on 4 antibiotics (Still currently on 3 antibiotics), extremely sick and has been out of school for 4 months and is currently on hospital homebound. After a peer to peer with our pediatrician and insurance he was approved for a one time IVIG infusion (March 2017) but has been denied for 8 upcoming treatments… so now to another outside insurance appeal. After blood work we also discovered in the last year along with the haemophilus influenzae, he also had Epstein Barr (MONO), Human Herpesvirus 6, Herpes Simplex 1 and Mycoplasma.
Needs high dose IVIG, did okay after the pneumococcal vaccine she was also required to get for insurance approval. Was approved for an Ig SubQ Infusion trial for a new drug (Cuvitru) for primary immunodeficiency. She did 4 rounds every 2 weeks. She did great with it. But was denied by insurance when we tried to get approved on a regular basis. She has also been denied coverage for high does over and over. She struggles with rage, age regression, food restriction, OCD, etc.
Also approved for the Ig SubQ Infusion trial for a new drug (Cuvitru) for primary immunodeficiency. He did well with it and stayed well for the amount of time he was on it. Four weeks later he had a febrile seizure from Coxsackie Virus (hand, foot and mouth). He also is 2 prophylactic antibiotics to prevent illness. He is struggling with ADHD, rage, impulsivity, incontinence, and much more.