Exactly five years ago today, November 18, 2010, my son, Jesse, received his first IVIG (Intravenous Immunoglobulin) to treat his PANDAS.
Facebook reminded me of this 5 Year PANDAS-versary early this morning, but my brain already knew. I’ve had an uneasy feeling these past few days. Restless. Worried. A certain sadness. It must be the memories of this time of my life knocking around in my heart and soul and weaving their way through my cerebral cortex.
And today, Jesse is doing a lot better. Some blips here or there. It’s manageable stuff for the most part. I can say with certainty that we are nowhere near the dark place we were five years ago when PANDAS held us captive. When all I did was worry and despair and research PANDAS on the Internet. When Jesse would stay up all night watching TV and sleep all day and rage and/or OCD in between. When I forgot what happy even felt like.
After that first IVIG, there were still some dark days. There was a second IVIG in November 2012. There were three years of homeschooling. There have been four pediatricians. There have been five years of antibiotics. There have been several exacerbations/flares. But we have come so far in these five years.
- Now, I have had this Blog for two years. PANDAS Sucks exists to tell my story and our collective story about PANDAS/PANS with two series: Your Words and “PANDAS Sucks Because…”. (I have some cool guest bloggers/parents coming soon. Let me know if you have something to say. Our stories are who we are.
- I head up the Kentucky PANDAS/PANS Support to help and bring together the families in my state and spread awareness. (I’ll be talking to special education teachers on Sunday at the KYCEC Conference and have an info table.)
- I’m honored to be helping with the social media on a PANDAS/PANS documentary being made called “My Kid Is Not Crazy”. (Omigosh, I’m so excited for that movie to be released! Do me a favor and like the film on Facebook and follow it on Twitter.)
- I have also made countless friends with other PANDAS Moms that I would have not met otherwise. I do all I do to give back to other PANDAS folks because of the generosity of these kind friends that have given so much to me. I do certainly wish that none of us were dealing with PANDAS and had just met at a cool party instead. I’d walk through fire for a few of them…but I’d hope they wouldn’t ask me to do that…and they probably wouldn’t. 🙂
But five years ago today, I was a terrified mom that had lost her son to PANDAS after he’d had strep throat in December 2009.
I remember getting up to Chicago around 11:30 pm on October 16, 2010. We got a late start because I was trying to pack for every contingency possible, and we also hit a huge traffic jam on the way. Our hotel reservation was lost due to overbooking, and we didn’t get to our new hotel until after midnight. I remember driving to the doctor’s office the next day for our in-person appointment wondering if it really was PANDAS or would the doctor say he was wrong. About a month earlier the doctor had told us on a phone call that after reviewing his medical records and speaking to us that he was “95-100% sure it was PANDAS because it couldn’t be anything else.” I remember sitting there on November 18, 2010 and watching helplessly as the nurses and doctor held down my screaming, struggling son to place the IV in his hand. That IV would slowly deliver the IVIG medicine over the course of two days and hopefully bring Jesse back to us. I remember my son gripping his new iPod, our gift to him to keep him occupied during his procedure. I remember Jesse wasn’t making any eye contact that first day and hardly talked to us. I remember how the doctor told us on the second day that he could tell the IVIG was working because Jesse was putting the iPod down and making better eye contact and talking. I remember the evening of the second day of IVIG when Jesse went swimming, and how happy he was jumping and splashing in the hotel pool. I remember the long drive from Chicago back to Lexington, KY and watching every move Jesse made because I sat in the backseat with him.
The memories of that first trip to Chicago come in snippets and feel pretty surreal and yet are also still vivid. I remember thinking that the IVIG was gonna make the PANDAS all better. I didn’t know what I didn’t know. Jesse did improve, but there was still so much healing to be done. IVIG was not a quick fix, but I fully believe it helped his recovery. IVIG, antibiotics, and homeschooling would be the treatments I’d say have had the best effects. I had no idea what life was going to be like with more ups and downs than a roller coaster. I’m glad I didn’t know because I would have been more devastated than I already was, and my strength might have faltered. But I had much hope…and I still do.
Then there was the second trip to Chicago for IVIG in November 2012. My son wasn’t in an exacerbation at that time, so there are some memories of sightseeing and a better general mood. Plus, we knew what to expect with the IVIG, so a little less fear there but still scary (and they still had to hold him down to place the IV). And in June 2014, Jesse and I went on vacation to the Windy City and had a total blast. I talked about all three of these Chicago trips in this previous blog. Here’s some pics from the second IVIG and a cool pic from that summer 2014 vacation:
Yes, we have come a long way in five years.
Now, Jesse attends Montessori school for 6th grade. He goes to acting classes. He loves to swim, builds Lego sets, surfs the Internet, hates to do his chores, and watches The Simpsons (“Doh!”). He’s a pretty typical 11-year-old boy. He’s not that sick, scared little boy that we took to Chicago for that first IVIG five years ago.
Jesse even had strep back in September and didn’t go into a flare. This was his first case of strep throat since September 2010 and was diagnosed from a rapid swab. OMG!!! I went numb when the doctor said it was positive for strep (and you might hear more about that strep in the future because I’m still processing it). We did have to go through four weeks of antibiotics to get rid of the strep. But within 11 days of being diagnosed with strep, Jesse boarded a bus with all his medications in hand and went to Birmingham for three days with his class to study Civil Rights. Now, I drove separately and went to Birmingham too (LOL!), but it was for just in case I was needed and my worst case scenario from my imagination happened. Worst Case: Jesse gets sick and goes into a major exacerbation and they take him to the ER and the hospital doesn’t believe in PANDAS and takes my kid and lock in on a psych ward while pumping him full of psychotropic drugs and I’m in a long legal battle with the state of Louisiana to get my son back!!! NONE of that happened. Things were fine, so I hung out at the hotel with the made-to-order omelettes and went to an art museum. Whew.
So a lot has happened in these past five years. Who knows where we will be five years from now on November 18, 2020, our 10 Year PANDAS-versary. Where will our PANDAS journey have taken us by then? Jesse will be in 11th grade, and I’ll be 50 years old (OMG!). Anything can happen, and who knows how far PANDAS/PANS research will have advanced by then. Medical breakthroughs could be just around the corner.
I have much hope that things continue to get better for my son…and for your PANDAS/PANS child too.
P.S. Jesse saw this blog post open on my computer and asked “Mom, what’s a PANDAS-versary?” I told him that five years ago was his first IVIG. He asked, “was it a dark day?” I told him it was a dark time, but that he was doing better and the medicine helped him recover. I love that kid so much!!!
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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, 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.