Teagan was born with Eosinophilic Esophagitis (EOE). During acute episodes of EOE she experiences nausea, vomiting, severe abdominal pain, food impactions, joint pains and fevers. Her associated food allergies limit her oral intake to less than ten foods. She has a G-tube for supplemental nutrition and medications. EOE has no cure. It effects every aspect of her social life; school, playing with friends, special events and travel. It even causes major problems during her frequent hospitalizations because the foods she can eat are contaminated with the ones she can’t. Dye free medications and her elemental formula are not available. Bringing food that we prepare in a hotel are not allowed.
As if that wasn’t enough for her to deal with, when she was four years of age, she developed symptoms that can only be compared to a tsunami. It was the beginning of PANDAS/PANS & Autoimmune Encephalitis. One day we had a happy, active, well behaved little girl, and then literally overnight without any warning something had taken over her. Her innocent body was suddenly filled with fear and rage. It was as if her brain had been kidnapped. She had had an unknown illness two months prior that caused severe oral ulceration and a fever that lasted over a month. Then one morning she woke with extreme Obsessive-Compulsive behaviors, food refusal, regression to an infantile state, memory loss, severe separation anxiety, violent rages, irrational fears, incontinence, fevers, joint pains, severe headaches, loss of some motor skills, and crying uncontrollably. My sweet little ballerina was suddenly trying to hurt me as if I was her enemy. It was like walking on eggshells. If I didn’t or do something a certain way, she would have an explosive rage. She developed severe sensory issues related to anything touching her skin. She became obsessed with germs and began hoarding garbage.
As you can imagine we were at a loss. Not only did we have no idea what was going on with her, neither did her health providers. We reached out to numerous specialists who indicated that she fit the criteria for PANDAS/PANS & Autoimmune Encephalitis. However, most health providers looked at the symptoms instead of the overall condition and diagnosed her with psychiatric illnesses. The psychiatric treatment plan not only made her worse, but caused major adverse reactions. By the time she was accurately diagnosed and treated, over a year had passed from the onset of her symptoms. The key to recovery from these illnesses is early recognition and treatment.
For my daughter the usual initial treatments of antibiotics and anti-inflammatory medications (including steroids) were effective
immediately. However, this treatment didn’t prevent frequent exacerbations. Due to the severity of her disease, she now required intravenous immunoglobulin infusions (IVIG). This treatment was also very effective; however, she developed aseptic meningitis and could not continue with additional infusions. From there she went on the prophylactic antibiotic and anti-inflammatory medication protocol for flares.
Her diseases are chronic with acute exacerbations. Exposure to viruses, bacteria, allergens, other organisms and even stress can cause flares. Her symptoms increased in severity over time. By 2018 she needed Rituximab, a monoclonal antibody, which is used to treat some forms of cancer and other autoimmune diseases such as multiple sclerosis. This treatment took three months before we saw results, but the next two months were amazing! We saw our little girl coming back to us. Our happiness was short lived, because on the sixth month she was more severe than she was four years ago. All her symptoms came back with a vengeance, but instead of being a four-year-old little girl she was now eight years old and much more violent. She is under the care of the best specialists in the northeast including those in Boston (Massachusetts General Hospital and Tufts Hospital) as well as specialists in NYC and Washington DC.
In the summer of 2019, she was so critical that she needed another round of Rituximab. 95% of her symptoms disappeared, but came back 5 months later. Our doctor recommended infusions every 3 months, but at $30,000 per round this was impossible. She also ordered a full Lyme panel at this time (which was also not covered by insurance). It came back positive for Lyme disease, Babesia, and tick-borne recurrent fever syndrome. This may have been the cause of her PANS to begin with…. but finding a provider who believes in, treats, and takes insurance for Lyme began our next challenge.
Luckily, we were able to find a Lyme specialist and once she was treated for the Lyme and the Babesia together, we had our little girl back! She had almost a year of remission. She was going to ballet, jazz, and hip hop class, and horseback riding. She was having friends over, and even going to their houses. We had holidays back, dress up time, and made memories…good ones! It was amazing!! But then we started renovating our enclosed porch. Teagan loves animals! Over the years they have really became her, “therapy” and friends when she has had to isolate. We had the idea of making out enclosed porch an animal room. About 2 weeks after scrubbing walls, moving things, and padding the floor, she suddenly went into one of the worse flares we can recall. Our child was kidnapped in the middle of the night again. We explained to her infectious disease doctor what happened, and she questioned mold? She said mold exposure can really exacerbate Lyme, so we decided to have Teagan checked as well as our house. The results were shocking. There were high levels of black mold found in the basement, kitchen, and the porch we were working on. We must have rustled enough in the air to cause a major flare of her encephalitis. Now, we have mold toxicity to treat, as well an entire house to fix. We hired someone to come and completely redo our basement and treat it for mold. They are now working on the second level of the house. We had to pull up our kitchen floor, tear out our cabinets, and need a new sink. And we had to get rid of anything porous that was exposed, including out couch, chairs, tables, mattresses, and pillows. Unfortunately, home owners is only covering a very small portion of this and they do not cover mold in itself.
As for Teagan, things became very complicated. We had her blood drawn (20 tubes!!) to find out that she has a lot of deficiencies due to the mold and yeast she has been exposed to that are blocking her metabolism. Her immunoglobulin levels are also extremely low. In fact, they have kept going down since her last Rituximab which is the opposite of what they should be doing now. She has had multiple testing done and doctors appointments which once again has not been covered by insurance. They have been trying to order a quantitative MRI which insurance refuses to cover, even after appeals. And even though PANDAS Legislation hit a HUGE milestone this year mandating insurance coverage, insurance companies do not have to agree to cover anything until January of 2022. So, we are still in the same boat! She may need Rituximab again, but we dread trying to figure out how to afford it again. The doctors want her to have IVIG, but will that be covered, and will she develop meningitis again? Recently Keflex was started on her, as the doctors were thinking there may be a strep correlation again. For the first time we have noticed improvements!! So, now they are trying to figure out how to obtain coverage for her to have a picc line and receive home antibiotics.
As a parent when your child suffers you suffer too. You desperately want to save your child. It is a feeling of hopelessness, helplessness, anxiety and panic. You know that you have to be strong, but the inevitable exhaustion and fear take over. You find yourself crying yourself to sleep and mourning for what used to be your child’s life. There are times when you sit on the floor curled in the fetal position, wondering what the future may hold and why this is happening. Then I look at my other children and ask how can I help them? I wonder what this is doing to them. They are so young and don’t understand. So much of your time and energy is spent with your ill child, including trips to specialists and hospital stays. The relationship with your husband becomes strained as you unintentionally filter your frustration onto each other. Anger bottles up as you each try to decide the best ways to help your child and resolve each explosion. Even when your child is having a good day, we live in fear. We try to enjoy each good moment, however in the back of our heads we always fear losing her again. This disorder has frightened us in ways that not many people will ever understand. You literally have to live with this disorder in order to understand. My daughter suffers from PTSD, and so does the entire family. Everyone in the family has witnessed things that they never want to visualize again. None of us will ever recover from seeing her suffer so severely. She has actually made suicidal comments. She keeps asking, “what is happening to me? Make this stop. I don’t want to live like this anymore.”
I am sharing our story with you for a number of reasons. First and foremost, this condition is often misdiagnosed as a psychiatric disorder and treated with antipsychotics. Parents need to be aware that a sudden onset of OCD, food restrictions, and a combination of psychological and physical symptoms in their child needs to be evaluated for PANDAS/PANS & Autoimmune Encephalitis. So, if you notice a sudden change in your child’s behavior, especially after an illness, please look into this.
Secondly, I want to expose the immense struggles in not only accessing the appropriate treatment for a rare autoimmune disorder, but also having or finding the financial resources to pay for it. Whenever she has any type of health problem our local providers and hospital tell us that she is too complicated for them to render care. We were able to locate specialists in New York, New Jersey, Washington, and Massachusetts. Since there was a waiting list in Massachusetts where we live, we went to New Jersey. All of the specialists required that they be paid up front for visits and treatment because insurance companies have been refusing coverage for her disorder. Travel and lodging add to the costs. Once her condition deteriorated it was impossible for me to continue working as a registered nurse. During her frequent exacerbations she requires twenty-four-hour one-on-one care. My husband had to take on two jobs, working seven days a week. My parents had to exhaust their retirement funds. We have a Go Fund Me site which has helped immensely. However, it is a very humbling experience. Financially you feel like you are sinking in quicksand. You come up for air when you get donations, or have a month or two free from appointments and treatments. We started a GoFundMe years ago when this first started, and thank GOD for it! We would not have been able to afford her treatment if it was not for the support of others. Unfortunately, the costs and treatments are ongoing, especially at times when she has a flare. Until insurance decides to start taking responsibility, we find ourselves relying on others to get her care.
The last reason I am telling our story is to increase awareness about the difficulties in accessing support options for families. Services would be available if she had cancer or needed residential treatment for a psychiatric condition. The components of her disorder are recognized and supported separately, but they are not viewed as compromising an entity which requires a unique support approach. Discharge plans from hospitalizations rarely address the medical aspects of her illness. In general, there is a lack of support for addressing quality of life issues, treatment side effects and prognosis concerns, management of daily symptoms, parent and sibling support, and assistance with effective communication between the family and specialists. There is no cohesive coordination of care since the primary care provider rarely supports the treatment plans of the specialists. After most hospitalizations or specialists’ visits, my daughter just returns to her tormented existence, until she becomes medically unstable once again.
We welcome you to follow her journey.