PANDAS Sucks exists to tell our collective story. We do that by telling our individual stories, which are similar but unique to our situations with our children. This story is Mary’s story, which is really Paul Michael’s story…well, the whole Nelson family’s story. You can read more in-depth about Mary and her son Paul Michael here, here, here, or you can watch a CBS News story video here. (Warning: Trigger alert if you watch the video.)
The Nelsons have really put their PANS story out to the world. I remember when these stories originally came out sharing them and thinking how brave it was to be so open with the details. Now, I’m Facebook friends with Mary. 🙂 She heads up the Stanford Area PANS Parent Support Group and the Facebook group by the same name. The group hosts in-person at Stanford on the first Thursday of each month, and as an added bonus, they also have a teleconference option that is open to any PANDAS/PANS Parents. (NOTE: See the questions below on how to get signed up for the conference call.)
I asked Mary if she would like to share a bit about her PANS Story and give details about the Stanford Area PANS Parent Support Group. She said YES, or you wouldn’t be reading this article. I sent some questions to Mary, and she sent back answers. Here’s Mary’s story in Her Words:
Thank you for being so open with your PANS story in the press, which has likely helped many other families. It’s all so heartbreaking. Your son, Paul Michael, had severe and violent symptoms beginning when he was seven-years-old. He was hospitalized over 50 times in five years, including in-patient stays, a year and a half of residential care, and the police involved at times. I’m sure it’s difficult to recall those times. Were you seeing progress during the times when he was misdiagnosed or were you still trying to figure out what was happening?
Mary: We were lucky to receive a diagnosis in the first year. As a parent, you never want tests to come back positive unless you have a severely ill kid and you have no idea what happened. We were “lucky” that a beta-2 glycoprotein antibody came back high. That, along with the clinical signs/symptoms (including thrombocytopenia) gave us a clear indication that he had antiphospholipid syndrome, a form of PANS. This was especially helpful in getting insurance coverage for the expensive long-term treatments this diagnosis demands. I was told at the onset to expect a 3-year period until results would kick-in. It was a roller coaster of ups and downs, twists and turns. Hope was fleeting. With 50 hospitalizations and 26 72-hour police holds due to danger to himself or others you can only imagine what our family went through. At times it felt our very sanity was on a thread. We were miles past exhaustion. In addition to caring for Paul Michael we tried to work, take care of very active sibling (national cheerleader championship team member), and somehow strive for self-care so we could continue on. We had many times where it felt like one step forward, two steps back. He was being treated initially with steroids and cellcept in addition, he was trying numerous psych meds to quell the symptoms. Eventually, we began rituximab and then ivig to supplement his immune-compromised state. A few years ago we had a period of a couple months episode-free and then he came down with H1N1 and this set him into several more months of flares. During all this time since the psych industry did not buy into the idea that an autoimmune disease could cause behaviors like this he was diagnosed with ADD OCD ODD bipolar schizophrenic autistic, etc. and was also being treated from the psych end which did provide him some tools for coping with his symptoms. We saw progress but it was slow and it was hard to hold onto hope.
When the PANS diagnosis was finally made and you found out that it was an autoimmune condition causing the symptoms, what was the first sign that the treatment was working?
Mary: High dose steroids helped; this was diagnostic that there was definitely inflammation going on in his brain. About three years into immune-suppressive treatment the episodes stopped. There would be near-flares, there would be emotional meltdowns; but, not the full on violent, rageful, self-harm, etc. that we had previously seen. He started to use his coping skills. It was hard, and still is, to discern what was normal behavior (all kids have big feelings at time after all). We were still very much suffering from post-traumatic stress. Any time there was a loud sound or difficult feelings exhibited the whole household would walk on eggshells. We slowly and tentatively started to have hope. This disease is allegedly (although no one has firm data on prognoses; most autoimmune diseases are remitting, relapsing) lifetime and he will flare again—this is very scary to me especially now that he is 14 and 5’8” tall.
How is Paul Michael doing now? How is school? What’s his current treatment plan?
Mary: Paul Michael is 95% “back”; though it’s hard to assess what his baseline would be given how sick he was. He still suffers from OCD tendencies, he still has difficult times and has learned to cry instead of become violent which is a huge step forward. He has full transitioned into public school this year—first time since first grade. He made the honor roll! We have decided to lower the risky ritux treatment and instead go back to cellcept. My fingers are crossed and my “antennae” are up as I don’t know how this will affect him but the ritux affect should be wearing off by spring. It’s a science experiment and my son is a guinea pig…but, so far—so good.
You mentioned in a news story that there was a lot of grief. That tends to be a common theme in PANDAS/PANS families. What were the most effective coping skills that your family used?
Mary: My husband and I were very fortunate that it was “us”…we hung in there despite terrible situations and extreme stress. We started clearly stating to one another when we were beyond our ability to cope and would ask that we be extra aware of how fragile the others’ current state was. My daughter was forced to grow up too soon. At ten years old she would have to call 911 while I restrained a violent kid and then try to explain to the police what was going on. Sometimes her needs had to come second. Our family was in constant crisis. We went to therapy, we used our support system of friends and family, we slept whenever possible, we cried a lot. I was so depressed in the beginning I entered a therapy group. It was rough. I guess we were soldiers. We just kept marching, kept reminding ourselves that it’s the illness not the kid (hard to do when he’s ranting demonic statements at you), and very much lived one hour at a time. I joined a parent group at NAMI and this saved me. No one could understand like another parent. Family, friends, doctors, specialists not one could give me the compassion I so needed as another suffering parent. They need not even say a word, a look in their eye and you knew that they knew your pain. I guess the main coping skill that helped was we were very kind to one another, we divided the labor (one parent doing dental and Rx’s; the other handling medical; taking turns making psych visits sometimes involving 4 hrs of driving for a half hour visit); coordinating care providers, taking turns getting daughter’s needs met (I never missed a cheer game or competition!); and somehow getting our individual emotional, physical, and spiritual needs met. I also learned about the steps of grief (i.e., denial, bargaining with God, depression, anger, acceptance) and I found that they are more of a cycle or continuum you can through one or more of them in any day, any hour, any minute. Forgiving myself and forgiving others has also been a saving grace—when people are at their most stressed it’s important to give them space, give them compassion, not take negativity personal.
You are very active in the PANS/PANDAS Community and even won the Stanford Clinic PANS Award in October 2015 for your advocacy and parental support work. As the Coordinator of the Stanford, CA PANS/PARENTS Peer Support Group, what made you decide to open up the Support Meetings to a teleconference/phone call format?
Mary: I cannot stand the idea that there are parents out there isolated in this personal hell. I am so blessed that my son is ok for today that I just want to give back. There is nothing as satisfying as hearing another parent make that connection with another and know they are not alone. Our group has been going for almost two years and with so many that can’t leave their home due to flares, due to the child’s OCD, due to the separation anxiety, due to the distance to get to Palo Alto…I couldn’t stand to not open the group up to anyone and everyone.
What do parents need to do in order to participate in the monthly phone calls?
Mary: Parents interested in being included on the call, please text me your email to 650-245-2781. I will send a welcome email to you and add you to the teleconference invitation. You can also go to the “Stanford Area PANS Parent Support Group” on Facebook to join and get more details. The next Support Meeting is on Thursday, March 3, 2016 at 5:30 PM (PST).
What do you feel is the biggest issue facing the PANDAS/PANS Community right now?
Mary: The need for research dollars. Without research and solid data it will be hard to safely help the many victims of this devastating illness. It will also be continually difficult to convince care providers that mental health issues could be caused by biological factors such as autoimmune disease. I believe with more research we are on the brink of a major breakthrough in bipolar, schizophrenia, and other mental illnesses. I would particularly love to see, in my lifetime, the stigma of mental illness be lessened…kids with cancer do not get treated like kids with behavioral symptoms due to an underlying disease…it’s heartbreaking.
What advice would you give to a new parent facing a potential PANDAS/PANS diagnosis for their child?
Mary: Love the kid; hate the disease, be open-minded, be kind to yourself and others, find a way to get some rest and. rejuvenation for yourself don’t be afraid of healthcare providers, do not give up, find other parents to talk to, know that you are not alone, take one minute at a time. Also, let the kid sleep as long as they need even put it in their IEP at school…their brains need a lot of healing
Please complete this sentence: PANDAS Sucks because….
Mary: PANDAS (PANS) Sucks because…of all the unknowns (when will it hit, what causes it, what will control it, what does the future hold, what what what…the worry is endless…PANS has taught me to live in the moment and cherish the times my sweet son is okay).
A GREAT BIG THANK YOU to Mary for sharing so much and being so open with her PANS story. It surely has helped other families going through PANDAS/PANS. If you want to be added to the teleconference on Thursday, March 3, don’t forget to contact Mary by texting your email address to 650-245-2781.
Are YOU interested in sharing your story with the PANDAS Sucks readers? Send me a message here, and I can help you. It’s easy and can be anonymous if you are concerned about privacy. If you would like to participate in the blog series “Your Words: PANDAS Sucks Because….”, just click here to send a reason or a list of reasonS for the next publication.
I’d like to send a special Thank You to the PANDAS Sucks Readers and the 1,200+ Facebook Followers (and everybody on Instagram, Twitter, and Pinterest). I’d also like to direct you to the Kentucky PANDAS/PANS Support Facebook Page, Instagram, and the KPPS web site. And, don’t forget to like the Facebook Page for My Kid Is Not Crazy–a PANS/PANDAS documentary and the movie’s Twitter account…I’m the film’s Social Media Manager. I truly appreciate all of your support on these projects. It’s my pleasure to help bring the PANDAS/PANS info to y’all so you can stay up to date. You’re never alone in all of this. Never. Me either. <3
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Want to send a message to Sarah? Click here.
Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.