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?
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
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.
This portion of my family’s PANS Story focuses on Mold as a trigger for PANS. Before this we had done many treatments for our son's PANS.
After 4 ½ yrs, we had gains but not lasting health. Our LLMD told us that “when patients have been with me for a year and a half and haven’t gotten well, I tell them to look for mold.”
I made my husband help me make 8 trips to the town dump on the hottest day of the year, tossing out junk and damp cardboard from the basement, replacing rugs, getting rid of house plants, testing for mold in every room and his stopping me just before I took a sledgehammer to the sheetrock to look for mold behind the walls. We had disposed of a lot of damp moldy material but saw no improvements so stopped thinking about mold.
Then my son started fifth grade in a different wing of his school building and got markedly better. All PANS symptoms went away. His standardized tests showed that his estimated IQ in 3rd grade had been 93 but was now in 5th grade were 116. His Muscle pain went away; his eyesight improved and is convergence insufficiency corrected itself. He was able to stop antibiotics. At that point we did not realize there was a connection to mold.
Our daughter was a normally developing child. But that changed soon after she turned 6 years old when we saw a rapid rise in anxiety and agitation. We had no idea what the cause was or what to do about it. Shortly after these symptoms started, she was diagnosed with sleep apnea and her tonsils and adenoids were removed to help alleviate it. Her anxiety and agitation remitted completely and suddenly. However, as we had not heard of PANS at this point, no correlation between cessation of symptoms and the tonsillectomy were made.
We had four good years after that but then at the age of 10, things really started to decline quickly again. We saw the fast emergence of severe OCD, higher anxiety, extreme separation anxiety, depression and tics. Our child had completely changed once again. By the end of 4th grade she was no longer able to attend school.
DIAGNOSIS & TREATMENT
During the year, she received several misdiagnoses, which resulted in being prescribed several medications that not only were ineffective but made symptoms worse. Thankfully, our integrative psychiatrist determined that she had a neuro-immune based disorder. She encouraged us to travel out of state to see a neurologist who specializes in PANS. This neurologist was our “hero” and started her on the road to wellness. First, he prescribed antibiotics, which helped tremendously, but the benefits were not long lasting. Next we did a prednisone burst and it helped even more, but the results were short acting as they often only temporarily tamper inflammation.
We eventually worked with another specialist who prescribed our daughter IVIG, and that was the start of even more healing. For our daughter, it took many IVIGs and not just one. She had significant improvement after the first round; anxiety and depression were the two symptoms that were alleviated the most. However, after about 10 weeks she would decline again and symptoms would increase. So she would do another round of IVIG.
Even with tremendous gains, we knew there was a missing piece to her healing. We returned to integrative medicine with now our third PANS specialist. She was put on a strict gluten free, diary free and sugar free diet. We saw more improvements, specifically a dramatic decrease in anger, hyperactivity; she lost weight and her mood was much more stable. However she needed two more rounds of high dose IVIG. The integrative medicine doctor chose to administer two more doses but instead of waiting for a decline, only allowed 7 weeks between doses. After these dietary changes and two additional rounds of IVIG, OCD was the one remaining symptom. OCD was not constant but it continued to cycle. She would get waves of OCD along with very intrusive and scary thoughts every 24 hours, starting at about 5:00pm and would last one-two hours.
She was then diagnosed with Bartonella and was treated with two prescriptions: Azithromycin and Rifampin. Several natural antibacterials and antivirals were added to the regimen including Olive Leaf Extract. Within two weeks of treating Bartonella, her OCD was almost completely gone. Since she has been treated for Bartonella, she has not needed another IVIG. All in all, her doctors said we have been treating Strep (documented), Mycoplasma, congenital Lyme and Bartonella.
Currently at age 15, my daughter is really starting to get her life back. She is a competitive gymnast and is taking an improv class. She is homeschooled and is getting straight A’s. She is still on a very strict diet, and we are now using supplements to support her immune system so she continues stay healthy.
It has been a difficult ride, and our story is more complex than most. Our wishes are that kids will be diagnosed much more quickly and treated with more accuracy.
My son is an amazing, passionate, sweet, sensitive boy. As a baby, unlike our daughter, he had low energy and always seemed a little down. At about 7 years old he began having rages in his room, throwing things and screaming. A Neuropsychologist diagnosed him with anxiety. In subsequent years, other symptoms began to arise: vocal and motor tics, obsessive thoughts, and his moods were all over the place, from depressed to manic at times. I was sick in my heart that at 7 years old he was receiving therapy for depression, anxiety, OCD, and emotional lability. Other changes we noticed, but didn’t realize at the time were PANS symptoms, were the urge to urinate frequently and unusual gait. One of his OCD manifestations was the compulsion to confess trivialities. Two different neurologists diagnosed him with Tourette’s syndrome. It got to the point where the therapy wasn’t enough: he started talking about hurting himself; his self-esteem was low and wasn’t making many connections with other children. Some of his journal entries included the following:
By the time he was 11, my husband and I reluctantly decided the time had come for him to start medication. We were hesitant and afraid, but were willing to do anything. His Neuropsychologist was familiar with PANDAS and referred me to a Psychiatric Nurse who treated children with PANDAS. At the time I really didn’t think he had PANDAS because everything I had read stated that it had to be an abrupt overnight change and his symptoms seemed mild in comparison to other children. I did not realize that his “abrupt” change could have happened back when he was 7 and having his rages. The Psychiatric Nurse met with my husband and I for two hours and then with my son for an hour and a half, asking all kinds of questions, trying to figure out the big picture. She was a Godsend. Based on those interviews, she chose to do further blood work as well. At this point my son had never had pneumonia or strep throat. His test came back very high for Strep and for Mycoplasma Pneumonia. His Lyme test came back negative. I did not realize at the time that the routine Lyme testing often comes back as a false negative.
My daughter was 7 years old when her personality completely changed; she went from a happy go lucky little girl to a paranoid child with unrealistic fears of tornadoes. It was so bad, she could not be near windows, all of the shades had to be closed, and was not be able to leave the house if it was dark or raining. I also had to have her seat in school moved away from the windows. Her fears were severe and real to her and as a result had full-blown panic attacks. She not only had obsessive-compulsive thoughts but also did cartwheels non-stop as if she was driven by a motor. She had severe separation anxiety, wet the bed, hallucinated, paced around the house at night not sleeping, and when she did sleep, it was in bed with us. She had sensory issues; she had trouble with her socks and pants, just the feeling of them on her skin would bother her.
Everyday I brought my daughter to school she cried, she cried so much the nurse would call and I would have to come take her home. I was so lucky I did not lose my job and was able to bring her to work with me. Then there was a really bad rainstorm and she was so distraught that she stated she wanted to die. I immediately brought her to the hospital, where I saw a physician who thought she might have PANDAS. They did a rapid strep test but it came back negative. At the time, I did not realize the antibiotic she was on for a urinary tract infection could mask the results.
We followed up with her pediatrician who put her on adult doses of anti-anxiety medications, doses so high that the pharmacy called concerned. In my opinion, these medicines also contributed to hallucinations she was having.
DIAGNOSIS & TREATMENT
I poured over case studies on the Internet and was convinced regardless of the negative rapid strep test, PANDAS was still the proper diagnosis. Two months went by with no changes, and I contacted the emergency room doctor to see if she could run a blood titer to check for strep in her system. She did have an elevated titer so was put on an antibiotic. It took another year and a half of low dose antibiotics to see continued results.
She had seen at least 5 therapists, 2 psychiatrists, a neurologist and 3 pediatricians before being treated. She lost 18 months of her childhood before proper treatment.
RELAPSE & REMITTANCE
After treatment, she got about 70% better for about 3 years. She still had anxiety but was able to manage well enough. But then she got a severe cellulitis eye infection in which both eyes were swollen shut; she was sent by ambulance from the local hospital to the large city hospital. She received the strongest IV antibiotic to control the infection. She had pockets of fluid in her eyes, which required surgery. This is when we started re-living the nightmare! We honestly thought antibiotics had treated her problem and we would never be here again! This flare started with major fears and anxieties: she thought her teeth were falling out, that her appendix burst and started having chest pain. We had EKG's, XRAY's, Ultrasounds, and finally our pediatrician suggested seeing someone at a mental health facility. I reluctantly took her there, where they separated us by a locked door, had an evaluation with her and then brought me in. I knew my daughter did not belong there, or did she? It is so hard to see your child decline like that, you wonder why this is happening and if this will be for the rest of her life. We started back on our journey with PANDAS. Thank God I had started a support group in the midst of all of this to ensure other people would not feel alone; I needed these people now. When my daughter first got sick there were no resources, only case studies on the Internet, so it was a very lonely time.
She has since been treated again for Strep and also has tested positive for Lyme, Bartonella, Erlichiosis, Mycoplasma pneumoniae. In addition to these infections, she has POTS. She also had neck swelling which has since gone away with antibiotic treatment. They think she is a strep carrier so does not show typical symptoms. I feel as if Strep and Lyme have both been culprits in her illness. She is 17 now and is still being treated, we are hopeful that with this new treatment plan she will continue to get better and not remit again.
We also have a son that was diagnosed with a much more mild form of PANDAS which did not require long-term antibiotics to treat.
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