My friend Jeanne has created a lovely YouTube video entitled “Our Gift of PANDAS/PANS.” The photo essay chronicles her son’s PANDAS story with the backdrop of “Lean On Me,” a special song that was a theme for her family’s journey. Here’s what she says about the video:
“Our PANDAS/PANS Journey was very dark — but when the light shined — it shined bright. The song was the journey’s song. The font colors – orange/yellow are significant… TJ use to draw abstract art using just orange and yellow and say that is what his brain felt like. After reading Brain on Fire [a book by Susan Cahalan] and realizing the similarities, realizing that at 10 he was accurate in his description.”
Jeanne created the video and said she was “hoping it will not only bring awareness but give a family some hope…that normalcy does return. My heart breaks for those not correctly diagnosed.” You’ll see in the video how dark, dark, the days were, but there’s light and hope at the end. Once in a wheelchair, but now TJ plays baseball and dances in competitions. It’s definitely a story full of HOPE…and everyone in PANDAS/PANS needs that. And let me give a HUGE SHOUT OUT to Jeanne’s Mom Instinct. We’d do anything to help our kids, and Jeanne is absolutely the embodiment of that sentiment. Yes. <3
Here’s another video that’s a news story from fall 2013 featuring Jeanne and her son TJ along with a few other PANDAS/PANS families:
The picture below was from the vacation back in 2014 that Jeanne and TJ took after he was well enough to start traveling again. It’s very special to Jeanne. Her original post of the picture in 2014 had a message of what this photo represented. It’s NOT just another vacation photo! Here’s how Jeanne explained the picture in Her Words:
“This is not just another vacation photo… the value of this picture speaks thousands of words to my soul and heart. Our journey traveled by some, invisible to most. To the many onlookers, we were just another family boarding a plane to Orlando to celebrate among so many others. What the naked eye didn’t see and couldn’t possible understand were the challenges associated with a trip that so many around us beamed with excitement.
Previously we traveled so much that TJ earned a companion pass, knew some of the Southwest flight attendants by name, and we were annual passholders at Disney, Universal, Seaworld, and Gatorland. We participated in every “extra” magic moment available – from opening the park to appearing in shows and parades. It was truly a magical decade!!!
Suddenly and without any notice – life, as we were accustomed to, ceased to exist. Many blamed the divorce… some blamed the deaths… some blamed puberty… and, then some combined them all. There were so many that offer advice. “Friends” left, not quite knowing what to say or do. But, in my mom’s heart, I knew he was accepting of all the changes… that this happened for a reason. It took us three years to explore and learn about PANDAS and another year to treat, expose, and travel the road towards recovery! There have been speed bumps and at times, potholes, but last year was full of victories – every day success. There were and still, at times, flare ups and frustration. The future is a bit scary – every day a challenge – doing everyday age-typical things.
It broke my heart to see my once intelligent son struggle with simple math problems, diminished handwriting, unable to draw a simple picture, and unable to tie his shoes. It was torturous to watch him sit alone, withdrawn and uninvolved, when previously he was active, outgoing, and nicknamed by others as “The Mayor”. Seizures and Tics were difficult and exhausting to us both… even in his sleep his body would contort, twist, and tic.
During the three years it took us to learn about PANDAS – life existed only in our home – venturing out was exhausting and nearly impossible – saved only for doctor visits and hospital testing. Homeschooling was a necessity – not a choice. Doctors would tell me “this is TJ now, accept him, the old TJ is gone”. EVERY visit and test resulted in another diagnosis – the wrong diagnosis. Being on the crest of a little-known childhood disorder is not only exhausting and frustrating – it is scary… each doctor prescribing another pill… just before the correct diagnosis TJ was taking 26 pills daily – barely to get thru the day. To participate in an hour basketball game – took hours of pre-game prep and hours of post game debriefing and that is if nothing went “wrong”. If there was anything out of the ordinary… the night was exhausting with petit seizures triggered by the anxiety… and, what I use to call after-shocks for hours. Post diagnosis he takes one pill and a lot of exposure and cognitive therapy to slowly journey back to “old TJ”.
This picture speaks volumes of our journey – so much invisible and unseen by others…
We landed, exhausted – but we did it!!! Now it would take some time to digest that experience and hung in the condo for a couple of days to decompress. We attempted to go to Magic Kingdom… lasting an exhausting and anxious fill 2 hours. Another day to hang in the condo… decompressing… during which we discussed what we could do, reassuring TJ that hanging in the condo was fine with me – that we are here.. he did it, proud he went outside his comfort zone. He suggested a trip to Miami, having no idea how far away it truly was. The secrets of a PANDAS/PANS mom… never let on to your own anxieties, exhaustion, or frustration – that will make an episode worse and longer. We packed the car and headed to Miami…
Once there – music to my ears… “Mom, put the roof down (we had a convertible) – remember how I couldn’t stand the wind, I want to feel the wind again”. We drove in circles… Then… “mom, I want to go see the girls on the beach”. Sun, beach sand, and water were on our off limit lists for so long… NOW…
We are in Miami on January 1st (a new Year – a new beginning)… sunny.. walking on the beachsand barefoot, on the waters’ edge (still wouldn’t touch the water – but… success). Our smiles, his eyes and skin color, and a “stranger” taking our picture – screams a thousand unspoken words.
SMILE, APPRECIATE, and ENJOY each moment!! You never know when life will change… HAPPY NEW YEAR and blessings in 2014!”
Jeanne’s story is full of HOPE. In February 2010, Jeanne’s son, TJ, had gone from “a healthy child to a sick child overnight.” Per Jeanne: “For three and half years – life was anything but normal. TJ suffered from OCD behaviors (hair twirling, eye lash pulling, blinking eyes), Tics, hallucinations, dilated pupils/blank stares, a different “color” to his skin, white pimple rash, fits of anger, eating (fears of choking and being poisoned) and drinking (would only drink small amounts from a sippy cup) issues, hygiene issues (refused to brush teeth), sever separation anxiety (I couldn’t even go to the bathroom without prepping him), sever general anxiety (fears of everything from spiders to God), poor concentration, school work diminished (math and handwriting were poor), motor skills and coordination, joint/leg pain, couldn’t attend school, cutting/bad thoughts, sleep and mood issues (insomnia – we played many an Uno game at 3am), sensory issues with touch and lighting, cognitive skills regressed.”
It was a client that told Jeanne about his own grandson’s illness…PANDAS. She started doing her own research and read the book Saving Sammy by Beth Maloney thinking that it was THEIR story. She asked friends and other people that knew TJ before and after the change in his health what they thought. It was against the advice of his medical team (which included some professionals that had to Google PANDAS and doubted the condition) that she contacted a doctor in NJ to confirm or rule out the possibility.
After a consultation and initial exam, TJ was diagnosed with PANDAS on November 7, 2012. He began treatment and within a year, TJ was taking one small pill per day to ease anxiety (after taking 8-10 anti-seizure pills a day for over 3 years). He went back to school full time with minimal issues, started playing sports again, volunteered with special needs, participated in peer activities (ie school dances,etc.). As Jeanne remarked in an email she sent to a reporter that she shared with me too, “He actually reminds me, especially when he is a ‘normal’ teen… ‘Mom this is what you wanted… I am just being normal’. (How can I argue with that?).”
I asked Jeanne to complete this sentence: PANDAS Sucks Because…just when you think it is going good… Wham… It’s baaaaccccckkkkk!
Yes, PANDAS/PANS can be on again and off again. That is certainly something that many of us can relate to in our PANDAS/PANS lives. But knowing that it is PANDAS/PANS sure beats the heck out of not knowing what you’re dealing with as far as the symptoms. Getting an accurate diagnosis and appropriate treatment and knowing there real options to help your kid is a wonderful thing. It’s so great to hear the stories where even though there may be bumps in the road (and “potholes” like Jeanne said above), the PANDAS kids/teens Keep On Truckin’ towards the finish line.
I am also happy to tell you that TJ competed in a ballroom dance competition this past weekend. He and his partner, Elyse, got First overall in Standard and Second/Silver in Rhythm and Second overall in American Smooth. Way to go TJ (and Elyse!)!!!
Thank you to Jeanne and to TJ for bravely sharing their story…one of HOPE. In PANDAS/PANS, there are setbacks and there are flares, but we can turn what seems like 3 steps forward and 2 steps back into a freakin’ Cha-Cha. Jeanne and TJ have taught us that. All we have to do is just KEEP DANCING! We’ll get there.
P.S. Don’t forget to send in your Valentine’s Day PANDAS-GRAMS. Deadline is the end of the day on Saturday, February 13, 2016. Thank you!
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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.