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.
My son, my daughter and I all have Noonan Syndrome. We have what is known as the PTPN11 gene. Our cardiologist diagnosed Kylie with Noonan Syndrome and sent us to the genetic dept. to confirm it. After that, they tested my husband, our son and myself. We thought after getting that diagnosis we had an answer to all the problems we saw occurring but this was not the case. I brought my concerns up with our local pediatrician at the time; he kept blowing us our concerns off because of having the Noonan Syndrome diagnosis and an autism diagnosis. The children are on opposite ends of the autism spectrum. We were referred to neurology after Kylie's recent strep infection and behaviors.
Neurology ordered a 24 hr Video EEG in the hospital, which produced an abnormal EEG. The neurologist told us anyone can have these electrical discharges but that doesn't mean the person will actually have seizure and then they dismissed us. We proceeded to a 2nd neurologist who put my daughter on a tic medicine, which made her behavior worse. She should never have been placed on that medicine because it can lower blood pressure and she has a heart defect. Neither neurologist provided any effective help.
On September 30, 2015, our 4-year-old son woke up a completely different person. He was speaking differently; he had uncontrollable anger and rage. All of his clothes felt itchy, he said. Then he started counting numbers, repetitively; it was non-stop number counting for hours on end. Then he started chewing the inside of his lips raw. We thought it was just an off day, but we knew something was terribly wrong the next day. He woke up the next day with all of the same behaviors as the day before, but this time something else happened. We were eating dinner at the dinner table when all of a sudden, our 4-year-old looked at us and said "Mommy, I just peed my pants on the chair. I didn't even know I had to pee." I knew at that moment something was so terribly wrong with our son, as he had NEVER had an accident since he was 2.5 years old. He wet the bed twice that night, and then woke up telling us that his brain was saying awful things to him and making him feel angry. He also developed a severe separation anxiety and anxiety about everything in general.
Before September 30th, our son was your average 4-year-old, kind, sweet, and outgoing. He loved making friends and going to school. His teachers once told us at parent teacher conferences that he was at the top of his class, morally and academically. He was vibrant and smart and so enjoyable to be around.
I immediately called his pediatrician and she got us right in. She took notes of the behaviors, did some of her own tests, then she called two other doctors in. Each doctor took turns examining our son. After they talked outside of the room, they came in and said we would be immediately admitted to a children's hospital for observation. Something was wrong with his brain, they said. It could be a stroke or a tumor, and he needed to be evaluated immediately by a neurologist.
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.
You guys, I've got some things to say about anxiety so listen up.
We have had the hardest time getting people to believe that Dallas has severe, debilitating anxiety. He smiles A LOT so he MUST be happy. Like, all of the time...right?
Despite his therapist confirming it, despite his neurodevelopmental pedi & psychologist writing 15+ page reports (each!) detailing his anxiety and it's triggers...even going so far as to note that Dallas uses smiling as a coping mechanism for his anxiety to keep the people around him happy...and noting that his outer expression of emotion/mood rarely matches what's going on inside his head.
Despite all of that...we still constantly hear "But he always looks so happy," "But all of the pictures you post of him on social media look so happy," "But he's so well behaved in (insert whatever situation setting here)," but, but, but.....
Dallas is wonderful, spunky, outwardly happy little boy most days. Especially in a school setting and most social situations.
And the reason that Dallas is outwardly happy is because he's terrified of upsetting people. Of feeling like he's in trouble. Of people not liking him. That's something he deals with every waking moment of his life. And that is A LOT of stress for a 7 year old little boy to have to deal with.
And behind closed doors, when he feels "safe" at home, that stress and anxiety explode out of him. For hours and hours he'll become inconsolable...sometimes appearing to be in actual physical pain from it. And let me tell you, it is heartbreaking to watch.
So why don't you see him upset in the pictures I post? Because I would NEVER betray the trust and safety that he feels with us at home by posting those bad moments for the world to see.
Yes, I have videos. I take them to share with his doctors so that they can see what happens at home.
But unless you are one of his doctors or therapists, you will never see one of those videos.
And if you're still wondering why you don't see him upset in most public settings, well, please go back and read everything I just wrote.
By acknowledging that Dallas feels extremely anxious most of the time, (no matter how his outward expression of emotion may appear), we can all better accommodate him and help him feel more at ease in situations where he may feel especially anxious.
By acknowledging his anxiety, we validate his feelings and can then help him to better work through them.
Now does all of this mean that Dallas never feels happy?
There are certain situations where Dallas can really let go of his stress and just feel happy. Most of the time those situations include art, animals, music, and RUNNING. Dude loves to run! So we try to include as many of these types of activities as we can into his day to help him feel more regulated.
I'll stop ranting now and just leave you with this...Just because you can't see a person's inner struggle does mean that it does not exist. Period.
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