Good morning, PANDAS!

So… what is it like? Here’s a good morning, a really good morning.

This morning my son asked for fresh waffles (he won’t eat anything if he knows it came out of the freezer as it may be old). We got his sister off to preschool, thanks to a friend who’s been picking her up and taking her the last couple weeks as mornings are usually pretty rough. I can’t imagine how our days would start without this help as mealtimes and leaving the house are the hardest things for him. It was a struggle before we got this help and it set us up for failure at the first things we tried to do each day.

I made waffles with this recipe from 100 days of real food (click here for yummy-ness). We used regular organic flour as it was on hand and we used Coconut Oil for the oil as it’s very anti-inflammatory and one of the big problems in PANDAS is inflammation. We’ve switched to organic for anything soy, corn, or wheat as most of these crops are now Round Up resistant which means they can spray the whole field with Round Up and the food plants won’t die. So a lot of our food has all been sprayed with weed killer. We learned from a nutritionist there’s a lot of concern around Glyphosate and inflammation. Luckily we don’t eat a lot of processed foods to start with and our son had narrowed his diet so much already, it wasn’t too hard to make this switch.

Amazingly, he came right to the table and ate the first waffle! He wouldn’t use utensils, and his hands have been on the do not use list for weeks, and I wasn’t going to feed him, so he ate like a dog-leaning his face into the plate and slurping up each bite of waffle. Until something happened (this could be anything-he sneezed, I opened the door to let the dog out, he thinks his hair touched a piece of waffle) and what was left on the plate was contaminated. It was only a couple of pieces, so I gave him a new waffle and plate. Immediately his hand touched it, so that had to go…. he received another plate that was given with the warning that I would give him more waffle after this only if he ate this one, not if he rejected it. He ate the whole waffle and part of another!

Onto the medicine, he takes children’s Ibuprofen for the inflammation and liquid antibiotics in the morning. He likes the Ibuprofen so that went down no problem. The antibiotic must be taken with a chaser. He varies the chaser-food or drink or his other medicine. But he always likes to have water. I had given him an orange and turmeric (another anti-inflammatory) juice. He had waffles and he had strawberries. But he needed that water. “Mama, is the dishwasher clean?” “Yes”, I reply. He inspects the top shelf, declares it all dirty. Pushes me into the counter where I’m leaning over the hot waffle iron…. Duh, I shut the waffle iron. “Their dirty! They touched a water bottle!” So, all the clean dishes are dirty.  “Why didn’t you wash the Belikin Beer glasses?, ” yelling at the top of his lungs. No, these are not beer goggles, but 3 glasses hubby and I brought back from a trip to Belize we took while I was pregnant with our son. They have been the glasses of choice lately. He’s cycled through most of the glasses in our cabinets and now none are fit for drinking. Once again he has gone from 0-60 in the blink of an eye and I’m wondering what the hell is wrong with the glasses he drank out of yesterday or the day before or last week or last month. And how am I going to get water in him if the dishwasher, which has been the holy answer to everything, doesn’t clean? I’ve learned to use cycles I never knew we had-1/2 load? Yes! Quick wash? Yes!

Today is the first day I’ve seen him go without water, so I’m not sure what he’ll do next. He did drink the OJ/Turmeric juice so I figure he’s alright. We let it go, somehow he takes the medicine. The moment passes.

This is an EXCELLENT morning. No furniture was flipped, no punches thrown, no nails digging into my hands. The yelling went quickly and he’s happy and bright and seems like himself now. There are these glimpses of Brice that we try to soak up as they come and go.

I wonder if he feels it, too.

2 Comments on Good morning, PANDAS!

  1. Harriet Shugerman
    April 4, 2015 at 2:08 pm (3 years ago)

    Ali- You are a brave,courageous and loving Mom and your son is blessed to have you. You are in my thoughts and prayers- Harriet

  2. Linda Gelineau
    April 8, 2015 at 9:00 am (3 years ago)

    My God,Ali, I had no idea that this was happening to my little buddy, Brice. My heart goes out to you and the family and I will keep you in my prayers. Give Brice and Coco a hug from Miss Linda.


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