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.
I remember the first day that I really knew something was wrong with Catherine.
Prior to that, she was a difficult baby. She had difficulty hitting her milestones, was constantly constipated where she would be up all night screaming. No amount of miralax or pear juice seemed to cure it. It was truly hell on earth.
In November of 2015, when Catherine was 1.5 years old, she started with the ear infections. They were constant, and after only a few months, we were referred for tubes. Upon meeting with the ENT, I brought up her speech difficulties, as she was only saying four words, which all sounded the same. She also had a chronic runny nose that would not go away. He suggested Zyrtec and made an appointment for tubes.
Once Catherine had her tubes in, we thought her speech would take off, but the ear infections persisted and she seemed to get worse.
The day I realized there was something wrong with Catherine, she was pushing her baby doll in her baby stroller. Up and down the sidewalk, she would walk her baby. Occasionally, the stroller would get caught up on an uneven part of the sidewalk and Catherine would throw an all-out temper tantrum because she couldn’t get the stroller to move. I would calmly move the stroller for her, and she would be on her way again. But the fact that she did this, at the age of 2, for more than an hour, was alarming to me. Combined with the fact that she would throw these temper tantrums over something as simple as getting caught up in a part of uneven sidewalk alarmed me even more.
My Story - PANS Project
The month of August has always been a month of celebrations, trips, parties, and friends. August 2009 was no different – A trip to Camden Yards, a visit with the Orioles in their clubhouse, a meet and greet on the field with Red Sox, a game of wiffle ball with Orioles mascot on field in front of fans, a camping trip with friends, a deep sea fishing trip, an amazing party with friends, family, and new neighbors. I always had friends laughing and hanging without any anxiety. I was excited for school, alert, outgoing, and absolutely no behavior issues or anxiety.
September 2009 - I missed the first week of school because I had strep throat and an ear infection.
October 2009 – I had H1N1 and was quarantined – it was very scary.
November 2009 – I was required to get the H1N1 vaccine to return to school.
December 2009 – Symptoms started to appear. Gazed look, large pupils, blank stare, no expression, pale coloring, puffiness, sleepiness, anxiety.
February 2010 – After my first Grand Mal Seizure - The beginning of tests. EEG, CAT Scans, MRI, Spinal Tap.
During the summer of 2009, after divorcing my husband, my son and I moved into our new home. Shortly thereafter we experienced many losses, including his 19-year-old babysitter and “big brother” to a car accident and his 21-year-old cousin to cancer. My son was already in therapy to help get thru the divorce and move. According to his therapist he was engaged and accepted the losses.
The Day it all Started
Suddenly in February 2010, during school vacation, life significantly changed. TJ was attending zoo camp as he had several times previously. When I picked him up on Thursday, the counselor who had known TJ since he was two, pulled me aside and said he acted very strangely in camp today. He was withdrawn, hid under the table, wouldn’t eat, and wasn’t his usual happy go lucky kid; she was very concerned. I explained that he was going through a lot and maybe it finally caught up with him. His grandmother watched him that night while I worked. At 8:00, she called me very concerned and asked me to come home right away, “Something was wrong with TJ”. TJ had cornered himself in a fetal position, soiled himself and was violently jerking. It was very scary. Friday, my good friend agreed to watch TJ while I had some appointments. He told me that he thought TJ maybe having seizures; he jerked all morning and wouldn’t eat or get off the couch.
My Son Bradley was born in 1998 with Down Syndrome. He was and still is everyone's special boy. He has made amazing strides in life and continues to amaze us today. He verbal skills are very limited so he could never tell me when he was sick. It was very difficult figure him out sometimes.
Sudden Onset OCD and TICS
Back In 2007, when he was nine years old, things changed suddenly. He developed behavioral issues, OCD and Tic disorder. Because of his disability, the psychiatrist would blame his Down Syndrome instead of looking further to find the root cause. As a parent you are desperate to help your child with these issues. We decided to try anti-psychotic medications. However, things got worse over time so in 2011 we decided to change doctors because I was tired of all the horrible medications and side effects. We started seeing a pediatric neurologist when he was 13 years old. He was still going to school but we were noticing more sporadic meltdowns and aggression, more panic and tics, The Neurologist diagnosed him with ADHD, OCD, ODD, IED, with possible Tourette Syndrome, GAD, and Panic Disorder. One thing we pointed out to the Neurologist was he had been treated with numerous antibiotics for different surgeries and infections mainly in his sinuses and ears and after those rounds of antibiotics he had wonderful behavior so much so it was like he was a different child. She looked at me like I had two heads and I was the crazy one.
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