So a few months ago I posted about PANS/PANDAS Progress and ARFID Relapse. So now it looks like we have flip-flopped.
He had his last IVIG in June and then went into an eating disorder treatment center in mid-July. He made some great progress with his PANS/PANDAS symptoms of OCD and even tried a few new foods on his own.
Then he said he wanted to take a coding class! He hasn’t been motivated in a long time to restart classes. He has been so rigid and only wants to do something if he could do it perfectly.
This was the first sign that IVIG was finally working!
It took a full four rounds before changes started happening. It has been years since I have seen this much enthusiasm happening!
But he had been losing weight and was not able to eat enough food. His safe foods were down to only a few things. He felt that he needed to go back to eating disorder treatment at a residential level.
I contacted the National Alliance for Eating Disorders and got the latest list for adult, male, ARFID, and in-network with our insurance. The list was not long. Four places. Then I called them all and it was narrowed even further because programs change.
IVIG Delayed
Unfortunately, his IVIG treatments were put on hold. He cannot receive IVIG inside the treatment center. One of my biggest pet peeves about our healthcare system is that you cannot treat both medical issues and mental health issues at the same time or in the same place. No matter how connected they are.
If he could get treatment for his eating disorder and have the nurse come in and do his infusions, that would be huge! But that’s just not how it works.
So off he went. He was doing better and trying new foods. Things he never had before like fish! OMG! Fish! He didn’t actually eat a portion. Just a bite, but before he wouldn’t even be near it. So major progress. And he didn’t hate it.
About three weeks in, the improvements we noticed since the last IVIG were starting to fade away. He let me know that he felt a change. His team also noticed the change and felt like he was going backward. I had to provide his team with information about PANS and the relationship with restricted eating. They didn’t really understand.
I provided them with my Google doc of information and resources about PANS/PANDAS and the relationship with restricted eating. I don’t know if anyone even read it.
He did gain back the weight he lost. He did add a few new snack foods and peanut and butter sandwiches which were safe foods long ago.
I get it. The therapists and dietitians there are experts at eating disorders. ARFID is also not a typical eating disorder. So it is a big stretch for them to understand a medical disorder of the immune system that causes mental illness and has a side effect of restricted eating.
Unfortunately, restricted eating is the most life-threatening part of all this and that’s why getting better control of it is the priority.
What’s next?
When he discharges, he will step down to PHP, Post Hospital Program. We will likely do that closer to home or virtually. I’m so thankful that we have good options with our insurance and so far it has all been covered.
