On Thirteen

*Suicidal ideation warning*

Link turned 13 today. 

I have had moments on my own remembering the day he was born. It wasn’t a magical homebirth like I had planned. More like a process that happened to me and out came him. The first thing I noticed about him was his ears. They are still one of my favorite features of his. I yelled at the nurse to not touch him. We watched the first ever Pac-12 games on the TV at the hospital. I remember feeling abject terror holding him as I was wheeled out of the hospital room. 

Link has not been an easy kiddo. I wrote about it four years ago when we first got his PANS/PANDAS diagnosis. Being his mama, and his primary medical detective has been exhausting. I have spent so many hours, days, weeks of my life trying to figure out the next step to help him, troubleshooting tricky behavior, talking to specialists, advocating for him at school, and explaining to friends and family why he’s so quirky. 

To be clear, I love him from the bottom of my heart. But it has been really fucking hard. We hit a plateau, I would say, at the start of fifth grade. His flares would come and go. Behaviour would become really problematic and we would double down on anti-inflammatories to try and help him. He had a few friends but not many. He was ok enough but we (Mica and I) described it as low level shitty. 

Moving to Hood River was rough on him, and I don’t think it can be chalked up to the move. I got weekly calls from the school. He served three in-school suspensions for physical altercations. The educators at Hood River Middle School absolutely showed up for him, giving him other consequences when out-of-school suspension was required because they saw a kiddo who was battling things outside of his control. He didn’t really make any friends. 

For about two weeks last fall, Link had vivid suicidal idiation. It isn’t the first time that this has happened to him, but you are never ready for it as a mama. Nothing prepares you to watch your child sob on the couch, saying he just wants to die. We had to hide medications. His crisis counselor told us to keep a close eye on him next to the river as drowning was something he was considering. We had long conversations about if we needed to remove knives from the house. 

With the move though we got a great pediatrician and an even better therapist that he sees weekly. His ped has been quick to prescribe antibiotics for flares which have reduced the frequency and intensity of each episode. In fact, the antibiotics were what really helped him out of that suicidal ideation. He connects well with his therapist and I think she has done wonders for him.

Even though this move was the best thing we could have done, it didn’t fix the dark cloud hanging over his head. He was persistently moody and argumentative. He would come home from school exhausted and lie on the floor crying after just walking through the door. Nothing other than playing tech or reading a book remotely resembled fun. I have spent a lot of time the last two years telling my therapist how unfair it is that other people have fun with their kids.

We made it through the school year. Somehow. Certainly, the angels called sixth-grade teachers had a huge part to play. There were bright spots. We skied together. Much of it was hard but I have sweet memories. He fell in love with drama and was arguably the biggest fan of the school’s play this spring. I took him to the Portland Children’s Theater for a live play. He grew as tall as Mica. 

Another development this past year was frequent headaches. His pediatrician suggested we see a neurologist for both the P/P and the headaches. Through my connections with other P/P parents, I knew there was one Dorenbecher pediatric neuro who treated P/P kiddos. Finally, in February, we got an appointment for mid-August. 

Summer was more of the same. Low level shitty. Mica and I often talked about how little fun it must be to be him. He went to some summer camps and had a good time it seemed but we also got reports of him sobbing in his cabin. The argumentativeness and general sour demeanour about everything in life persisted whenever he was home. 

When the neuro appointment finally rolled around near the end of summer, I spent quite a bit of time thinking about how to use this very valuable time. Mica and I spent a lot of time analyzing what symptoms we noticed the most and made a priority list of what to talk to the doctor about. 

I wasn’t super hopeful she could help us on the P/P front. I figured since the suicidal ideation had abated and the flares were manageable, this was as good as it could get. Before his August appointment, we saw an ophthalmologist to see if the headaches were due to his eyesight. He also go an MRI. (Spoiler- turns out the headaches WERE due to his eyes. Kiddo has a whopper of a prescription, and on the days he wears his glasses to school now, the headaches are non-existent)

Much to my delight, the appointment at Dorenbechers was amazing. We spent nearly an hour with a pediatric psychiatry fellow and the P/P neuro expert. They listened. Like really, really listened. I was able to articulate that we suspected much of his behavior was due to some pretty significant anxiety. I was armed with concrete examples like how hard lunchtime at school was for him. He hates the cafeteria and always had to find somewhere to eat. Sometimes a quiet classroom space was open, but not always and how much anxiety the “where do I eat?” shuffle seemed to bring about. 

Then, they suggested medication. An anti-depressant. His pediatrician had suggested one earlier in the year, but we both decided that since it was unclear how a P/P kiddo would react, we should wait for the expert. I have been very much on the fence about putting my nearly 13 year old on an SSRI but this expert suggested a very very very small dose because P/P kiddos usually don’t need much and promised we would have a review in three months. 

She gave me confidence. I said ok. 

Finding the medication dye free was a challenge. I spent about 15 hours over the span of a week calling pharmacies, insurance, and Dorenbechers to figure out how to get this medication.  I finally located it and, four days before the start of the school year, Link started Zoloft. 

I wasn’t sure it was doing much at first. I knew it would take a while to kick in but I still watched him like a hawk. Mostly because of the warnings that SSRIs can make some kiddos worse. About 10 days in, we noticed his thinking was a bit more flexible. It’s hard to describe to someone who doesn’t live with him, but his ability to handle a situation shifting was a bit better. All of a sudden a change of plans was met with a shrug and a “sure” instead of resistance and lying on the floor crying. 

I started to have hope. 

And then he laughed. 

I didn’t realize it was missing till I heard it. He was playing with a nonsensical toy he got at the arcade and was laughing out loud. To himself. Just being silly and having a good time. 

When I put him to bed that night, he was so happy. Unprompted he told me, “Mom, I just love life so much right now.” 

It feels like someone turned on the lights. I have lost track of the moments over the past month where I have had FUN with Link. Silly things like running errands together are filled with sweetness and giggles. He just had FRIENDS over for his birthday party on Saturday. He had an epic three-day birthday bender and there wasn’t a single tear or fight. He’s absolutely crushing school and seems to have more ease tracking assignments and putting in effort. 

I’m devastated it took this long to figure out but I am so glad I waited till we got the expert advice. As with every step of his medical history, I do beat myself up for not trying harder, pushing more, researching further. I can also recognize that we have persisted. All three of us have worked so so so hard to get to this point. 

I don’t know how long it’s going to last. I keep waiting for the other shoe to drop. It’s not perfect, like anything, and every time we have a tough moment I worry that we are down a spiral but each time it has panned out to be just that- a moment. 

So, cheers to 13. I am convinced it is going to be his best year yet and I can’t wait to spend it having fun with my kiddo.