PANS and PANDAS often mimic mental illness, presenting as psychosis. The day after Aidan’s worst night in the psychiatric hospital three years ago, he sat in the corner of the hallway picking at his red hospital socks and said to his nurse, Ms. English,
“Nobody knows how I feel.”
Our son, Aidan, was psychotic – there, I said it. Nurse English was the one psyche nurse with whom Aidan connected. She was ultra compassionate and took the time to meet Aidan where he was – in the corner, in the hallway, on the floor. Picking, picking, picking at his one-size-too-big, floppy hospital socks – the ones with the no-slip bottoms. Interestingly enough, he still has those socks tucked away in his top dresser drawer. I think they were the highlight of his stay.
Yes, I saw it with my own eyes. Aidan was psychotic because of PANS. Pyschotic because of a illness that was almost diagnosed during his inpatient stay in 2016.
Unlike many children diagnosed with PANS or PANDAS, Aidan’s onset was not overnight; I believe that he had a misdirected immune system from infancy. However, I can recall what illness in what month of what year and how many weeks after he ‘recovered’ from that illness when we noticed increased rages and aggression, decreased motor skills and an onset of tics. In short, the bottom fell out. We did not know what to do or where to go.
We ended up in a pediatric psyche ward and came out with more diagnoses: a movement disorder for the tics and imbalance, and a second-time mood disorder NOS (not otherwise specified) for the rages, aggression and psychosis. He was also labeled a fall risk (rightfully so) and was emotionally liable upon discharge.
Game Changer #1: Proper Diagnosis
Three weeks after Aidan’s discharge from the hospital, he had an appointment with the developmental pediatrician who diagnosed him with autism. It was a follow-up appointment that was scheduled one year prior.
The exam room had a mat on the floor, and for that I was thankful. All Aidan had done since coming home from the hospital was roll around on the floor, from one side of the family room to the other.
I remember saying to the doctor, “Is this Aidan with autism but on different medications?” I explained life since the bottom fell out until now, looking up from the mat where I was trying to keep Aidan somewhat calm. I wasn’t very successful, nor was I ready for what the doctor had to say:
“This isn’t autism, Mrs. Keatts. This is PANDAS or PANS, and the most successful treatments are not covered by medical insurance.”
By the end of this appointment, my head was spinning. Aidan had been seen by more than 10 doctors during his inpateint stay, and at an appointment that I made one year prior for an unrelated diagnosis, we discover the root cause of Aidan’s symptoms that were holding him hostage in his own body.
Game Changer #2: Proper Intervention
If and when our children are properly diagnosed and a proper treatment plan is implemented, parents and doctors try to counter PANS and PANDAS with antibiotics, anti-inflamatories, steroids, supplements, IVIG and antibody therapy. Sometimes, one of these interventions or a combination thereof provides long-term relief. For us, however, they did not.
Our last resort was plasmapheresis, which in its simplest terms is a way to cleanse the blood system of the antibodies that are attacking our children’s brains. This is how I can best explain how plasmapheresis works:
- Blood has three parts: plasma, red cells and white cells. Antibodies are found in the plasma part of the blood.
- Plasmapheresis takes blood from the strongest source, the heart, and separates the plasma from the red and white blood cells.
- The red and white bloods cells are stored together and kept safe during the treatment, while the old plasma is collected separately and disposed of later.
- Then the red and white blood cells are put back into the blood stream with the new donor plasma.
- Plasmapheresis therapy takes place over the course of two weeks – three days each week, with at least one day in between each session.
Some kids, like Aidan, respond immediately to plasmapheresis – also called PEX. Others, progress slowly over weeks, even months. And still others require additional treatment modalities ranging from IVIG to cognitive behavioral therapy and intensive exposure therapy to further recover from the damage done by a misdirected immune system.
Regardless of the pace at which the child progresses following PEX, for many children this ‘blood cleaning’ process opens the pathway to healing and recovery.
On the Rebound
We are coming up on the two-year anniversary of Aidan’s plasmapheresis treatments, and since then I have spoken to several moms before their child began PEX. While their children’s onset stories and symptoms vary, one constant prevails — each mom is understandably apprehensive about plasmapheresis. It is invasive – a surgery is required to place a port into the aorta, and there is risk of infection.
Every time I share our experience with plasmapheresis, I speak from my heart. PEX opened a door to Aidan’s healing that I truly thought we would never find. In complete transparency, Aidan’s illness tested my faith far beyond any other struggle in my life.
Nearly two years later, I realize that there are four intentions that I subcouncioulsy set, yet mindfully observed during Aidan’s PEX. When I fully saw how the Divine’s healing hand was there all along, I gained clarity that is unique to Aidan’s journey. And so, I share with you my insights with a heart not only of gratidude for Aidan’s healing, but a fierce hope that your child will too find healing.
- Be brave. Your child and family have gone through hell and back because of PANS or PANDAS. You are all warriors in your own right. You have been courageous and resilient from the beginning – even if you have fallen apart and cried yourself to sleep more times than you can count. You made it to this point, and that’s what matters.
- Be bold. Let your spirit lead you. Let your worries drift away. Believe that your child will heal, and that healing begins this day. Sacrifice and intention preempt healing. Your child and your family have sacrificed much and suffered terribly. Now, set your intention. A mindset of clarity and healing is the next step. Each day leading up to the procedure claim your intention – to heal your child.
- Be open. Your child will be just as anxious and afraid as you are, yet neither of you will tell the other. You have both learned how to be stoic throughout this journey. I welcome you to share Aidan’s story with your child and explain that other kids with PANS / PANDAS have begun to heal after the ‘bad guys’ were removed from their bodies.
- Be watchful. Sometimes healing begins almost immediately. Other times it progresses slowly. Every child is different, and every story of healing is unique. The smallest signs of healing are blessings and are meant to encourage hope. Although Aidan’s signs of healings began just one day after his first plasmapheresis treatment, his full path to remission lasted more than a year. Healing occurs in stages as the body is able to respond and process various interventions. Be patient, and remain watchful.
After years of flagrant fouls and air balls in our journey to heal Aidan, PEX allowed us to score the winning shot in a game that ran into overtime for years. Reflecting on my fears, frustrations, desperation, and even my loss of faith, I now see twists and turns in Aidan’s illness through a new lens – a courtside view of Nurse English rebounding the ball for Aidan during open play in the hospital gymnasium, and a box seat view of the Divine palming the ball, guiding my next pivot and lifting us up for the final slam dunk.
MJ Keatts is a mom of three – one of whom inspired her to start this blog. A journalist by trade, minimalist at heart, and a stunt girl in her dreams, MJ proudly admits that she’s learned more from her kids and husband than she could ever teach them herself. She loves to laugh – especially at herself – and one day hopes to amaze her husband and be ready on time.
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For more: https://madisonarealymesupportgroup.com/2019/03/16/brain-under-attack-pans-pandas-related-developmental-disorders/
https://madisonarealymesupportgroup.com/2017/10/01/panspandas-steroids-autoimmune-disease-lymemsids-the-need-for-medical-collaboration/
https://madisonarealymesupportgroup.com/2017/10/08/misdiagnosed-how-children-with-treatable-medical-issues-are-mistakenly-labeled-as-mentally-ill/
https://madisonarealymesupportgroup.com/2017/12/01/guidelines-for-treating-pans-its-real/
https://madisonarealymesupportgroup.com/2018/10/29/neuropsych-disorders-in-kids-an-interview-with-co-founder-of-the-stanford-pans-clinic-dr-kiki-chang/
https://madisonarealymesupportgroup.com/2018/09/05/pans-autism-the-immune-system-an-interview-with-expert-neurologist-dr-richard-frye/
https://madisonarealymesupportgroup.com/2019/01/02/pans-pandas-a-survivors-story/
FYI: Lyme/MSIDS can often be a part of the PANS/PANDAS picture.
