Hi All! I know it has been a while. I think there comes a time for everyone when stepping back to catch your breath is a really healthy thing to do. Sometimes you just have to stop everything in order to start something. Both Steve and I were reading and researching and fielding questions so often that we neglected to actually IMPLEMENT anything new. We continued with our autoimmune paleo diet (we shifted to this from SCD even though they are very similar), gave him fish oils and antibiotics, and have used essential oils, epsom salts, and a few other supplements, but we backed off of everything else.
Why, you ask? We had been utilizing homeopathy with a mixed bag of results. Some remedies were fantastic. Little Man would return to us nearly immediately after taking them. And others seemed to aggravate his anxiety and mania or increase his aggression. I don’t necessarily think the remedies were incorrect, but I do think we were attacking each issue with such ferocity that his body just wasn’t quite ready. We were acting out of desperation and trying a new supplement as soon as we received it. But this only further confused things because we had no idea what was working and what was actually contributing to a worsening of symptoms.
I realize that many other PANDAS/PANS parents are scared to death to do this. They are fearful that the demons will once again inhabit their child’s body and all healing will be lost. I will tell you that we did experience a few of these episodes, but they were much fewer than six months ago and generally, much less extreme.
But do I regret this decision? Not one bit. Stopping all treatment allowed us all to relax into being a family. It allowed us to research all our options without having to rush out and try them all. But best of all, it gave us a true baseline and a real understanding of just how far Little Man has come.
So, what is that baseline? Well, some days are still better than others, but that is just par for the course for any child. His anger/aggression is still much more intense than the average 7 year old, though we have been teaching him how to manage it until he learns to express himself in a more appropriate manner. He still becomes highly agitated in certain situations, has major sensory issues when anxiety is high, gets into manic states or sensory-seeks and struggles with agoraphobia.
Keep in mind that a mere six months ago, Little Man spent at least 80 percent of waking hours in anger/aggression. Yes. AT LEAST 80 PERCENT. He is homeschooled but refused to attend any of his classes (Frankly, I was afraid to take him anyway) during that time. So, guess who got to spend 24/7 with the Incredible Hulk? Yours truly. Yippee!
If I had to put a number on it now, I would say the Incredible Hulk makes an appearance 3-4 times a week on average. But the new Hulk is usually a bit more subdued and rarely becomes violent. It is much more likely that Little Man is perfectly happy so long as he doesn’t have to leave the house. And while I have never, ever been a home-body, it is certainly easier to manage than the green monster.
On another note, Little Man began to display physical symptoms of infection and two days later, his filling fell out (for the second time). So, I can say without a doubt that he is highly sensitive to any dysbiosis inside his mouth, at best. We are still weighing our options on returning to the dentist as the anesthesia seems to send him spiraling. We did get a homeopathic detox protocol should he need it refilled.
So, what’s next? Well, I spoke with our homeopath last week and we will be going through a new series of treatments to stop the current infection and most likely, we will either begin to detox some of the anesthesia or return to a constitutional remedy. In conjunction, we are looking at a horse therapy program as he absolutely adores animals, ordering donkey milk and (likely) finally getting around to the Magnetic Resonance Therapy. I will, of course, update as we learn more.
Hugs and Healing,
Mama Bear
