XBox and Integrative Medicine

My son is sad--truly distraught--because we don't own an XBox Live.

"You don't understand, Mom. A Wii is boring. I NEED an XBox. I want one so badly. Everyone else has one. And it has to be LIVE so I can play with my friends. You don't understand. I think about this ALL the time!"

Tears. Oh, they melt my heart. But not enought to buy him an XBox. Sorry, XBox Live.

Normal kid stuff? Shake in a whole lotta OCD. Add a couple of tics. It's the PANS-kid cocktail. And once it becomes an intrusive thought, we're way past the my-kid-wants-a-new-toy-thing.

When he first got sick, THREE YEARS AGO, it was all about owning an iPod. "I HAVE to have it. It will make everything better." My husband gave in and let him use his old one. Voila! For five days, having this iPod DID make everything better.

And then, it didn't. 

Back to reality. "Well, if you save up your Chanukah money," I tell him, "and add it to your birthday money, you'll be able to buy one in a few months."

Nah-ah. Instant gratification is desired. And killing aliens on the computer is fun.

I can't blame him. Part of his life absolutely stinks. Why not go for fun? If he's not playing with friends, he is miserable. Fatigued, depressed, with joint pain and oncoming rages that he's trying to suppress. We are LUCKY that he can sustain friendships and lose himself in play.

But for how much longer? At home, that control is starting to slip, as he begins to use his weight and strength. He's not getting any younger. Puberty awaits.

I am very much aware that antibiotics alone are not saving my son. I have a zillion questions to ask at the next doctor appointment. I'm grasping, thinking, planning. What can I possibly do? I cannot believe that we will be unable to heal my son, unable to climb out of this PANS pit.

OK. I admit it. I'm desperate.

What has worked? IVIGs perhaps, for a period of time. But only until the next virus comes along. Or the next herx from treating the Lyme. Will he need IVIGs for the rest of his life? Plasma infusions come with their own risks.

A few days ago, I spoke with a VKP (Very Knowledgeable Parent) who has been attending conferences whereby she is learning that we need to heal the gut as well as the brain. The gut is crucial to our health--in fact, it has over a hundred million neurons and is referred to as "the second brain." Very cool! 

Of course, I give my son probiotics. Also, I have the GAPS book but haven't attemped even to crack it open (after my failed exploration into the world of gluten-free this summer.) I have read the summary of the diet, though. So, I bought kefir--which he won't drink--and I just bought saurkraut. My husband and I like kimchi. I made beef broth. But there is no way that I can get my son to stop eating carbs, and white bread and rice at that.

This is my plot: introduce a little "healthy" food at a time. Or make saurkraut/kefir smoothies and force them down his throat. Joke! Really!

I honestly tried to get the Halloween candy out of the house. "Hey, you two," I said to my kids. "I'll give you $10 each for most of your Halloween candy! You get to keep 5 or even 10 pieces. What do you say? I want to donate it."

"Really, Mom?" sneered my son. "$10? No way. I worked hard for this candy. We went all over the neighborhood."

"Yeah, Mom," added my daughter. "I live for this candy!"

OK. So, I'll just have to EAT the candy myself. Ugh. And I'm not even bike-riding lately.

Not that my little guy will even eat a lot of it. He's incredibly picky with his food now. I can't get much into him. Egg whites, creamy, but he won't touch the yolk. Oh, and he's suddenly into cole slaw. He will eat turkey legs, duck and lamb. No fruit or vegetables. Unless the broccoli is in Chinese food from the Chinese restaurant. He likes pizza if it's from a restaurant. 

He liked my roasted pumpkin seeds today--yay! And they're good for him, too! Double yay!

So, our next step, I have decided, is to see a doctor who can look at the entire picture, a doctor who can communicate with our current team of professionals, a doctor who will have alternative ideas, a doctor who can leap tall buildings in a single bound. Yes, she exists! For she is an integrative doctor.

Oh, and a lot of integrative doctors don't take insurance. Maybe I need to hold onto that $20 I would have spent on their Halloween candy.  I'm gonna need it.

Comments

[Angela Wright]

I understand your stuggle with PANS, We are living it as well. However, we have yet to get a proper diagnosis for our son. Our most recent visit to the dr, was a rheumatologist who doesnt really believe PANS exisits. I hope you contonue to post and keep us updated on the integrative doctor, I am very interested to see how it goes. Thanks for sharing.