Excerpt from the blog, Hidden Illness: Our Story of Recovery from PANS/PANDAS/LYME.
STRENGTH HOPE LOVE
Over the years we got a lot of well-meaning, really bad advice. In the beginning, one organization told me it wasn't Sensory Processing Disorder if it didn’t last all day. Our pediatrician said the UTI symptoms of frequency, accidents, and obsessive wiping, might be due to constipation even though I assured them she was perfectly regular. The sudden separation anxiety was a phase. The emotional outbursts that I could not console were typical developmental behaviors. No one knew what to make of it so when the symptoms subsided after a few weeks, we simply moved on.
Melatonin didn’t help. Reward charts brought her crushing disappointment when she couldn’t achieve her goals; dangling a carrot just out of reach is cruel. A psychologist, who couldn't get my daughter to look at him never mind talk to him, decided it was purely behavioral. I was instructed to tell her that these outbursts were "simply not allowed". He told me to take away something of great importance every time she didn't comply. "She will learn" he said, and me, desperate to bring her some relief, tried it. Desperate times. It only took me a few days to come to my senses and realize she could not help herself, but the mama guilt from a few of those nights is raw in my heart when I remember.
This child didn't need to learn these things; she had already learned all of it. She had hit every one of her developmental milestones on time but had somehow lost these abilities that had once come so naturally to her. This child, tortured from the inside, could not simply comply; she was sick and no one knew. I had always parented with a gentle guiding hand, setting boundaries and letting natural consequences aid our children in making better choices. Now I found myself reaching for straws, tough love, rewards, strong consequences, and some ABA therapy techniques. Nothing helped.
When the dark of night quieted my mind, my heart silently screamed out, "HOW could this have happened? Why? What happened to my child?" There had been no major life changes, no trauma. Nothing to warrant such a change in my child. She had been fine. I could remember her being a sensitive but pretty typical child in the not so distant past. What could have gone wrong?
This letter from a young boy with PANS to his parents is heart wrenching. What a beautiful little soul he is. Thank you to his parents for allowing us to share it with you.
We need health insurance coverage for PANS PANDAS. We need all insurance companies to create new policy to cover PANS PANDAS. Families should not struggle so hard. PANS is treatable especially if treated correctly and quickly.
NEPANS is so thrilled that our friend, The Dreaming Panda, has written a guest blog for us. This is our first story written not by the parent but by the person with PANS herself. We of course will continue to share PANS from parents too!
A few years ago, I was poking around twitter looking up PANS/PANDAS posts and came across The Dreaming PANDA. I read one blog entry then went back and read several more. It was the first time I had read something by someone with PANS. I had talked to many kids about their experiences but seeing her struggles and triumphs dealing with PANS while attending college, all written down really inspired me to keep working for people with PANS. Since then she and I have emailed and kept in touch. She is truly an inspiration for everyone. She has had some dark dark day but always keeps fighting, keeps hoping and keeps encouraging others to keep going, to keep Reaching Recovery. Please read her story and share with others. There is hope. And as she says, "Take courage! You’re not alone; you’re stronger than you know, and there’s hope for life after PANS. This disease is not the end of our stories." Thank you for sharing your story with us. It is an honor to have you guest blog for us. - Gabriella True
After eight years of mental illness and symptoms that over a dozen doctors failed to explain, in 2014, I was diagnosed with PANS. My symptoms had come and gone since I developed the disease at age eleven, so I’d successfully completed my first year of college a couple of months before my diagnosis. At nineteen, I’d been sure that my future was full of possibilities, but after what seemed like a mild case of mono, instead, I lost my mind that summer. My whole world shattered.
Out of nowhere one afternoon, I went from being filled with dreams to becoming inexplicably suicidal and terrified at the thought of simply continuing to exist. My entire body was suddenly consumed with wild involuntary movements, and I couldn’t walk. I was delusional and convinced I was going to die, but the indescribable psychiatric torture that had overtaken me was so intense that the delusion was the only thing that gave me peace.
My PANS was so severe that my specialist gave me high-dose IVIG right away, and she said it would start to help in six weeks. I naively assumed that after a few months, I would have my life back, and things would be how they were before. But more than three years later, I’m still fighting.
There are so many things that no one told me about what it takes to beat PANS—far more than I could possibly fit into one post—but for anyone out there beginning the healing process, there are three key pieces of wisdom that I’ve discovered along the way.
It might be a long road, it won't be easy, but you WILL get there.
1) It might be a long road.
My doctor warned that it could be several months for the full effects of my first IVIG to kick in. Indeed, a year and-a-half passed before I truly went into remission, and recovery was so slow that I often felt like I wasn’t making any progress. Nevertheless, after two high-dose IVIG infusions, months of antibiotics and steroids, a tonsillectomy, and some therapy to eliminate what was left of my OCD, I did finally get better in 2015.
I wish I could say that was the end of my journey, but a few months later, I contracted Lyme disease in 2016 and relapsed. My progress has been just as slow this time around, but the long road to healing is more endurable and less discouraging now that I know what to expect.
Recovery isn’t a straight line—there are lots of ups and downs and twists and turns, but if you keep fighting, the road ends in a beautiful return to health
I hope sharing my story can bring awareness to PANS/PANDAS and inspire people to keep going because one day, it will get better.
Hi! My name is Lily, I’m 23 years old and I have PANS. I’ve been hospitalized so many times I can't even count, seen doctors of practically every specialty recognized in the US, and had nearly every type of medical test run on me. I’ve spent 20 years fighting this, with only 5 years since official diagnosis, but today I’m in remission and this is my story.
I wasn’t actually diagnosed until I was 17, but my parents suspect I’ve had PANS since I first had a flare at 13 months. In the 1990s and early 2000s, PANDAS was only beginning to be researched, so my parents dragged me to doctor after doctor with no answers. The most prominent symptom was a head twitch that occurred after any acute bacterial infection, coupled with severe separation anxiety, episodes of rage and significant OCD tendencies. With no seizure activity and the behavioral symptoms chalked up to personality or growing-up, my symptoms faded in and out with each frequent infection.
After having chronic bronchitis for a year and getting the last of my Gardasil vaccines, I started shaking all over my body. It was the perfect storm. I was a senior in high school and the doctors were at a loss. They gave me Valium to put me to sleep each time I started shaking but offered no solution to the endless tics. I missed more than 45 days of school and desperate for answers, my mom started researching online. Once she found PANDAS, everything fell into place. The diagnosis fit me like a glove and we headed out to my family doctor to confirm and start treatment.
If only it was that easy. The primary care physician was convinced PANDAS, which had just started making the news, was a hoax and instead insisted I was faking it and needed to be sent to the hospital for a psychiatric evaluation. He scolded my mom for “trusting Dr. Google” over his expertise and only agreed to an ASO titer blood test after 30 minutes of begging.
Thank you to a special NEPANS family for creating these wonderful bracelets, handouts with a short version of their story, information on My Kid Is Not Crazy and NEPANS information sheets! They have dropped them off at the following locations:
- The hospital that treated their daughter
- Primary care office
- Local walk in clinic where they get swabs at
- Children's schools with a reminder to try to schedule NEPANS to visit
- Mailed to most family and friends.
- Local Library
- Local CVS Pharmacy Staff
How fantastic is this! Below is the text printed on the handouts. Everyone can create a version of these handouts for themselves to hand out. You don't have to have the bracelets.
Thank you so much for helping spread PANS PANDAS Awareness and Understanding!
I wonder, do you remember her?
Her name is Justine. She has PANDAS
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
Justine, a now 6-year-old girl, had a very normal life before all of this. She did have 8 cases of strep the year prior so I scheduled an appointment to get her tonsils and adenoids out in April 2016. No one was pushing it, I just thought enough was enough; I scheduled and pushed for it. Much to our surprise at the ENT visit 20 days prior to her surgery, she tested positive for strep. We were given the normal 10-day course of antibiotics and thought nothing of it. She was pretty healthy, had a very high tolerance for pain and did great for the surgery and recovery. Life went on...until 7 months later.
It came on suddenly in November 2016; it changed our daughter, it changed our lives. She was 5 at the time of her onset. We had just returned from a family vacation cruise and a trip to Disney. This is part of her story.
Justine started gradually having frequent urination and some anxiety. I brought her to be tested for an UTI, which was negative. She then changed overnight on November 22, 2016 in Kindergarten. It all started with very OCD and frequent urination with the need to go to the bathroom every few minutes at school. She went 54 times by noon. We had her tested for UTI's a few times in a matter of days. We were told it was behavioral, nothing medical, maybe vaginitis due to a lot of swimming on vacation.
They were wrong. We knew this day we lost our daughter. This was no tantrum; she had a fit of anger, this was a major event-out of character for our daughter at school.
Our daughter changed, you could see it in her eyes, hear it in her voice and actions. She was gone from us. Justine showed signs of separation anxiety and had asked to be driven to school for 2-3 days leading up to this. She had a very difficult time separating from me. Absolutely terrifying. As parents we were not buying that our daughter was starting to act out behaviorally for no reason at age 5. She was a fully functioning happy, energetic, polite, great listener and smart girl. What in the world was going on? Who took her? What took her? What did we do for this to happen? There has to be something medically wrong!
Our son, who has PANS/Lyme, was having difficulty at school and at home. He was very defiant, shut down, inappropriate and just unpleasant to be around. After treating fairly successfully for PANS/Lyme, he caught another virus, which set off another flare resulting in severe sound sensitivity and OCD in the form of a spitting compulsion. Public places, such as restaurants, movie theaters, and even school, were just too loud and overwhelming for him. If you can imagine, his spitting was so extreme that he had to carry a cup in the car to spit into in order to accommodate any travel. Some children with PANS also want to spit into a cup to hoard their spit; that was not the case in our son.
Neurofeedback was not on our radar as a possible therapy at that point. We began noticing in the Facebook groups that parents were discussing the positive impact that Neurofeedback had on their kids with PANDAS/PANS and Lyme. After discussing Neurofeedback with a local neurofeedback practioner one evening, we decided to try it for our son. We scheduled a QEEG brain map and review, which documented the areas in his brain that were impacted. We were fortunate that this practioner is PANS and Lyme literate and can identify Lyme on the QEEG brain map, as well as understand the challenges in parenting a child with PANS/PANDAS. In fact, she not only treats those with Lyme and PANS/PANDAS, but is a leader in the field and mentors other psychologists and neurofeedback providers. She then developed a protocol to address our son’s needs, and he began neurofeedback on an aggressive schedule of 3 sessions per week. To our surprise, he didn’t fight going to neurofeedback, as he often did with other therapies, because he got to watch movies of his choice during each 30 minute session while his brainwaves were subtly being rerouted to their most effective path. As we learned, this “exercise for the brain” helps to change his brain wave patterns to optimal functioning through a process of subconscious reinforcement. We were skeptical that it could help, but we were also desperate, and at the point of the “let’s throw this at the wall and see what sticks” approach to therapies. I had no expectations for neurofeedback, but was still hopeful.
Within two weeks, we noticed a material difference. His entire attitude was more positive. After 20 sessions, we scheduled another QEEG brain map and review. This showed a 46% improvement in brain function, which even the practitioner said was remarkable. We changed his schedule to 2 neurofeedback sessions per week, and the progress continued over many sessions, to the point that it was noticeable to anyone who had spent time with our son. He was and continues to be more engaged, makes better eye contact, and his sense of humor is on full display. He is also more affectionate, less defiant, better able to articulate his emotions, happier, and more willing to try something new. Thankfully, his extreme sound sensitivity and spitting compulsion disappeared. Follow-up QEEGs have provided us with a tangible record of his improvement.
While results from neurofeedback tend to be relatively straightforward in treating conditions such as ADHD, autism, traumatic brain injury, and addiction, it is a little more challenging with Lyme/PANS, because the spirochetes move. For this reason, we periodically schedule a neurofeedback session to maintain his gains that we have maintained for more than two years. We thank our neurofeedback for bringing our son back to us.
These handwriting samples from his weekly school journal present a clear picture of the handwriting being affected by PANS.
When PANS started, his handwriting was still somewhat neat in September 2016.
But from there his handwriting becomes progressively worse. It gets progressively messier and he clearly is not able to write on the lines. We are fortunate to have the handwriting as a clear marker to show that something was going wrong in his brain when meeting with lots of doctors and educators . My hope is that this helps another family.
I want to share my family’s story with PANS to help give hope to any other family that might be going through the same thing. My husband and I have a three-year-old son, Grayson. He came down with the flu on February 27. He was pretty sick most of the week, but on Friday, March 3, he was back to his normal self. We woke up to a living hell on Saturday, March 4. Our sweet boy had literally changed overnight. At first, we just thought that the “threes” that everyone had warned us about had set in. We were doing everything from taking away toys to timeout. We noticed that as the weekend went on, we could not get Grayson to eat or drink pretty much anything. Grayson has always been a pretty picky and light eater, but there have always been things that he would want. He would touch none of those preferred foods. My mother’s instinct told me that something was just not right, even though so many were saying that it was normal for a three year old to have tantrums. These were beyond anything we had ever seen our child do.
I took Grayson to his pediatrician Monday, March 6. Thankfully, we have an amazing pediatrician that takes no chances. She was extremely concerned; she said that any sudden or drastic change in behavior was a cause for concern, especially following an illness. That particular day, our pediatrician had a medical student following her around. The first thing that the medical student said was PANS and PANDAS. I had never heard of either term. We were sent for some lab work, and so ensued the worst week of our lives. Our pediatrician did not want to treat anything until she had the labs back. It was an awful feeling, as a parent, when I looked up what those terms meant. Inflammation on my child’s brain was not what I wanted to see. We watched our child act in ways that are so hard to even think back to. He would get so fixated on particular sounds or things from the OCD onset and all hell would break loose. We have never had a problem putting Grayson in his car seat, but, all of a sudden, the child was terrified of the car seat. It almost took two people to strap him into the seat while he was screaming and kicking and hitting.
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