Here is the deal…..PANDAS Syndrome sucks. It sucks sucks sucks sucks sucks! WK earned a trip to Disneyland for 3 days due to overcoming some behavioral issues we had been working on at home. The treat was that he and I were going to stay at the Disneyland Hotel for 2 nights which we had never done before, so he was pretty stoked. Everything has been pretty smooth for the last few months but I live in a world where daily I am always wondering when is the other shoe going to drop. I mean CLEARLY “paradise island” can only last for so long before the storm comes and turns your island into a swamp. Well folks…..the swamp has arrived.
WK and I hadn’t been to Disneyland for over year and that is because the last time we went, we left with his eye tics becoming out of control. When I say out of control, I mean that when we arrived he had no tics and within 8 hours he could barely stop fluttering his eyes. It was really upsetting as he had not been experiencing PANDAS symptoms for over a year at that time.
Fast forward to two weeks ago when we spent 3 days at Disneyland. One day two I noticed he started getting a rash “down there” which I assumed was from heat as it was super hot the days we attended the parks. On day 3, I started to see his belly tics come back and I thought holy moly there is NO WAY we are going to be doing this again, right?
Here is where I start to loose my mind…..we are two weeks post Disneyland and Warrior Kid has full blown belly tics back, so bad that they look exactly like they were at when he first was diagnosed with PANDAS 3 years ago. 🙁 I am not going to lie….I am sad and I am pissed off. He is on daily long term antibiotics and weekly SCIG infusions both of which combined should keep the PANDAS symptoms away.
Usually I am not at a complete loss of words when it comes to him or his medical stuff but how can it be that both times we went to Disneyland we left with his symptoms reappearing? He says the tics don’t bother him but if you look at him and the expression on his face when his belly is seizing up, it is hard to not think they are hurting him.
We went to his Immunologist this past week and she increased his SCIG medication by 2 grams for a total of 8 grams per week. This is going to move his infusions from 3 hours to 4 hours every Sunday morning. We also moved his daily antibiotics from liquid to pills as the liquid was staining his teeth brown which required trips to the Dentist every 2 months for polishing. Now that he can swallow pills, I was more comfortable having him try and swallow the antibiotics because it is a fairly large pill.
His rash is improved but not gone. His tics are worse than they were 2 weeks ago and his OCD has been challenging. I am seeing a lot of repetitive behaviors, rewinding videos multiple times to see the same part, rewinding songs to hear the same sentence over and over again, watching the same shows, asking the same questions and a LOT LOT of at home sensory integration strategies. For example every night when he should be tired and ready to climb into bed, he is doing bear crawls or snake crawls across the floor upstairs to try and get enough sensory input to calm down. The upside here is that he is self regulating and telling me on his own that he needs to do these things in order to calm down. I would normally not share videos like this but I think it is important to educate those who aren’t familiar with Autism. See below:
He/we will get though this but the frustrating part about PANDAS is that it could take a day, a week, a month or year. I just feel so upset and sad because WK goes through so much every week. He gets his weekly infusions, B12 injections every 3 days, daily growth hormone shots, takes 4 pills in the AM, 5 in the PM, special diet, etc. The upside here is that he has grown a 1/2″ since we started growth hormone injections in July:)
Thankfully WK had an amazing Summer break. He had the most fun he has ever had! Now that we are back to school and back into our routine, I will say that he is off to a great start in 7th grade at Mardan (special ed school). Here is a photo of WK and his BFF, Dylan at school the other week having what they call a “friendly lunch.” The kids get to take a blanket, sit outside and eat lunch together. They talked the entire time about Pokemon! Super cute.
We are back to playing drums a bunch and WK is having a blast. Here is a video of him crushing it on the drums at “rock school” a few weeks back!
Soccer season has started (special ed sports league) and the Sounders are off to a great start. WK loves to play Goalie and is actually becoming really good at it:) Below is a photo comparison from 6 years ago on his very 1st day of soccer ever and his first day of soccer two weeks ago.
Until next time!