Anxiety, keep on trying me

 Gabe started stuttering with language in 2019. We took him to a speech therapist who specialized in stuttering and she was able to mimic his stutter even. We worked on some strategies to help him smooth out his language. Then Covid hit and it didn’t really take. The thought was always that Gabe began stuttering because his thoughts got more complex and he almost used it as a tool to motor plan out his words because he wanted to tell us full stories, not just little sentences as he did in the past. It made sense to us. In 2021, he also started showing signs of anxiety. It was a Covid world of NTI on and off learning along with moving houses and school districts. It was a lot. We took him to see a psychologist and we noticed that with just a tiny bit of medication help, he was much calmer.

Fast forward to this year, and Gabe started showing more anxiety signs. This time he would actually hold his stomach and physically shake. There were also odd moments where it seemed like he was frozen and not able to move. It was more than just refusal and a hard “no” that he’s given us in the past around transitions. It was almost like he couldn’t wake up or couldn’t hear us. Once we finally broke through the freeze, he would move along with the transition no problem. It was very odd . We also kept thinking about his speech more and more. We looked back on videos, hearing him talk and it’s a bit devastating. We talked to his doctor at the down syndrome clinic.  She brought up a potential co-diagnosis of apraxia or autism. The tricky part is though, Gabe had all the skills and then regressed. It wasn’t like he just never developed them. She referred us to Neuro psychiatry to investigate a little further. At the neuropsychiatry appointment, they brought up catatonia, or down syndrome regression disorder. I’ve been reading a lot about that over the past month. The word catatonia generally has a stigma that’s a bit frightening, but it’s really a medical umbrella term for frozen movement, or withdrawn. Down syndrome regression is just picking up in awareness and research these days. They actually think it’s much more common than we realize since symptoms are often masked and blamed as delay or speech difficulty. Either way, it was worth delving into. Lab work and EEG all were normal, not showing any signs of seizures, inflammation, hormone, or metabolic issues that could be causing the catatonia or regression. Gabe is currently getting a brain MRI as I type this from the waiting room to make sure everything looks clear. It’s almost a matter of ruling other things out to see what’s left. Not sure if he really has catatonia or regression, but the symptoms warranted a work up.

As we investigate the catatonia further, we definitely acknowledge that there was an anxiety component as well. We’re working with different medication management and Gabe‘s anxiety has definitely improved. No more spells of getting stuck. No more episodes of shaking and holding his stomach. He’s also talking a bit more. For example, I used to say “good morning Gabe” in the morning and he would say “hey”. Now he says “good morning mom”. It’s not perfect, but definitely more language. He’s also following steps a bit better. He’s getting ready more independently at night. All things in the right direction and kind of back to the baseline. Maybe all of this really is just significant anxiety. Also, Gabe‘s been through some trauma in his life with all his medical needs. He’s experienced some heavy things that most kids don’t. Maybe some of that triggered it as well. Who knows, but it’s comforting to know that we’re tapped into the right specialist and experts to figure him out. There’s moments where he’s so clear and things are so thoughtful with him. You just want him to emerge so everyone sees it.

Special thanks to all his teachers, respite workers, and friends. Especially friends who stay patient with him and see his potential and thoughtfulness whether he’s speaking or not. 

We’ll figure it out. The brain, and that extra 21st chromosome are truly fascinating. Never give up on Gabe. 

Ps:  his spine and ankles are looking great and he’s getting stronger with exercises every day.