I felt like I was on Cloud 9….WK “was getting better!” Woo hoo! And then it all came crashing to an abrupt stop on 8/3/13. I noticed WK starting what appeared to look like spasms in his belly. He would be sitting and you could see his belly move almost like it was contracting. It was late in the evening on 8/3/13 when I noticed this. On 8/4/13, I took him to the movies and he was extremely wiggly in his seat, abnormally wiggly. It was almost like he was so uncomfortable that needed to keep moving around to perhaps calm himself? I don’t know really, but when the movie was over and we were walking to the car he just froze in the middle of the parking lot. I am talking eyes staring off into space, not responding to me screaming his name, not moving, just frozen. I FREAKED out, called my Husband told him what to grab from home (here we go again with the constant list of shit I have to bring everywhere, Blankie, ipad, charger, etc) and meet us at the local ER.
The local ER did a bunch of tests, and everything came back “normal” so they recommended I follow up his Neurologist on the following Monday. But see, I was a few steps ahead of the ER and already had a gut feeling as to what was happening to my kid thanks to one of my dear friends who was also helping me do some research. When WK started to have the belly spasms, she started to do some research and buried at the bottom of a page there was some info on PANDAS Syndrome. She sent me the link, I read all the symptoms and WK had EVERY single one of them. We all know that Google can be the Enemy and your Best Friend, depends on the subject. I asked the ER if they were familiar, of course they were not hence telling me to call WK’s Neurologist on Monday.
I called, we saw her and by then WK’s belly spasms had traveled down to his lower extremities where it looked like he had Cerebral Palsy when he tried to walk. He was able to take a few steps correctly and then his whole bottom half of his body would seize up and he would arch back. The dreaded word: TICS. UGH!
Yup, I was confident WK had PANDAS Syndrome and so was his Neurologist. Most people are unfamiliar with what PANDAS Syndrome is so here you go:
What is PANDAS?
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) occurs when strep triggers a misdirected immune response results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more.
I was definitely NO LONGER on Cloud 9. I was petrified. I was sad. I was fucking pissed. Why him? Why me? Why more shit to deal with? It was unfair. It was fucked up and I cried. I cried a lot. A LOT. I just could not imagine adding more stress to his schedule, more stress to my life, more unanswered questions, more Doctor’s appointments, just MORE OF THE SAME SHIT!
August thru October 2013 sucked. He didn’t improve, he got worse. It took us a few months to figure out what to do, who to see, how to treat him and we just went for the big gun treatment out of the gate which is a monthly high dose IV infusion of Immunoglobulin G which is something he is deficient in.
IVIG is an intravenous blood product (the immunoglobulin element of donors blood) that is regularly given to children and adults alike who have certain immune deficiencies.
In case you desire more detailed information on what IVIG Replacement Therapy does you can click this link however I just don’t want to be too boring or technical on this Blog.
The first 4 months of side effects from IVIG were awful. I mean awful awful awful. We wound up in the ER multiple times with dehydration, vomiting, headaches, anxiety, etc. And the fun part, remember we still have Autism 7 days a week, 24 hours per day. Yea SUPER FUN said no one ever.
Every 4 weeks I spend the day with WK while he is hooked up to an IV at home. Thankfully we have a wonderful home Nurse that takes great care of WK during this process. Thankfully we finally figured out the right protocol to follow so that he doesn’t have as many side effects. I might have the only kid on the planet that asks when IVIG is because he likes it. I honestly think it makes him feel better. His lower body tics have subsided for the most part and now we have facial tics but those also become less frequent after WK has IVIG. The scariest part of PANDAS Syndrome is that he cannot be around sick people. Someone who has the flu, runny nose, diarrhea, anything can set him off and cause a “PANDAS Flare” which results in increased tics, uncomfortable rash on his bottom and sometimes Strep on his genitals. Yup…you can get strep on your genitals.
This brings us really to today’s day-to-day life which I why I started this blog. See I am not the real Warrior in this story, WK is. Yes I am a Fearless Mama Bear who never takes no for an answer but he really is the TRUE Warrior. He has helped so many people, he just doesn’t know it yet. He inspires so many people, he just doesn’t know it yet. He is sweet, loving, funny, musically inclined (more to come on this later), learning karate, surfs, loves his school, always has a smile on his face, even when hooked up to an IV for 5 hours. I mean hell he doesn’t even cry when we go to the Lab and have to get blood work done. STUD! YES WK IS A TRUE SUPERHEO in my book.
I appreciate you all taking the Trip Down Memory Lane with me. I am glad to be here today and be able to share our journey with you all in hopes of truly being able to raise awareness about Autism and PANDAS Syndrome. I want to help Parents of Special Ed Kids have some hope, enlighten Parents of “typical” kids on what it’s like to live a day in my life and lastly leave behind a legacy for WK to be proud of. He and I are a great Team and www.Adayinthelifeofawarrior.com is just getting started!