Our beautiful, jovial, spirited son Dominic was diagnosed with PANS at age 6 by one of the most trusted specialists in the field, Dr T.
His sudden onset began early October of the same year. Our seemingly perfect child went to bed and woke up the following day with dilated pupils, ticcing so bad that he was literally unable to function or perform routine activities. By the time we got him into see Dr T the symptoms worsened. The tics were now motor and vocal and he started raging at his sister. He was having uncontrollable mood swings, irritability and began wetting the bed nightly. He shared incredibly dark thoughts that were terrifying coming from a six-year-old. Once he began antibiotics the symptoms lessened but never fully resolved. They would wax and wane then return with a vengeance until we trialed a new antibiotic and the cycle would start again.
We kept him on them for about six months but knew deep down that there had to be a more safer, more effective, holistic way to treat this illness. We were anxious, but we decided to stop the antibiotics and made an appointment with a Naturopath who specialized in PANS & PANDAS. Immediately (and when I say immediately I mean within 3 days) we saw massive gains. The bed-wetting stopped. All his intrusive thoughts stopped and his behavioral issues completely resolved. By the 3rd month all symptoms were gone except for the tics, which were much less noticeable. No matter what we did we could never get rid of the tics – even after nearly two years on homeopathic remedies. That was unacceptable to me and as long as he was ticcing I instinctively knew that we didn’t reach the core of this illness and had to keep fighting. But how? I didn’t know. I had dedicated two entire kitchen cabinets to supplements and remedies and was spending a small fortune on these alone. So I took a break from all of it. The MD’s ND’s, everything. I did continue his constitutional remedy, and vitamins C, D3, Curcumin, Omega3 and probiotics and we fortunately we did had a long peaceful stretch of normalcy. [exhale]
That quickly came to a halt in June 2015 when my son was was diagnosed with Chronic Urticaria Angioedema. If you haven’t heard of it; look it up. Frightening condition. He presented with hives and swelling everywhere, even his face and genitals. We we’re terrified that his tongue or throat would be affected (which is common) so we were given epi-pens and rescue inhalers to carry wherever we went. Juuuuust in case… Thankfully, that never happened.
After a long discussion with his father we decided that western medicine was the way to go. We didn’t want to risk a single chance that he would have any trouble breathing. However, that proved useless. After three months with no relief, his symptoms began worsening. Once again, we were lost, desperate and had no idea where to turn. As fate would have it, one day I turned Netflix on and told Dominic that he could pick ANY movie to watch together. He picked “Fat Sick & Nearly Dead” He had no idea it was a health food documentary – he just was amused by the title. Much to our surprise, the documentary was about a man who cured a horrific disorder by juicing…You guessed it. He had Chronic Urticaria. It had to be a sign. I bought an Omega centrifugal juicer and started juicing immediately. He drank 6-8 eight oz glasses or organic vegtable juices and 2 fruit smoothies a day. He ate only raw organic fruit and veggies for the first 10 days. Dominic’s Urticaria Angioedema healed! We also realized that his tics were MUCH better. He told us he felt “clearer and more energetic”. His ADHD was gone. His grades went from 45 avg to 90 avg in a couple of months! Juicing far exceeded our expectations. He still juices daily, but eats a regular diet of mainly organic, dairy/sugar free foods. He cheats only occasionally. And I have since learned to make my own Liposomal C (he drinks high doses 3000-5000mg daily) and probiotics – Coconut Milk Kefir (1 cup a day) He’s a happy healthy thriving normal child again. He tics only when he’s sick and that’s not too often anymore. Until those tics resolve completely I will keep fighting. I feel confident now that we have plenty of other weapons left in our arsenal of natural remedies. But when I find the tic annihilator I’ll be certain to let the rest of the PANDAS community know.
