A Story of Hope
To my PANS/PANDAS “family,”
I want to share my answered prayers with you, but more importantly, for you. I need to let you know that there is success out there and to tell you our path. Too often, we only hear of the struggles and acute health situations. The PANS/PANDAS successes fade off the radar screen because the parents of healthy kids don’t need the help anymore.
Of course, every story and every child are different, but here is our road to recovery. I hope it helps someone in some way:
Our 14 yo son was diagnosed with PANS 2+ years ago. You know the hell. Adolescent onset presents a bit differently than with younger kids. He didn’t have tics, food restrictions, and rages, but he had plenty of emotional lability, cognitive impairment, extreme fatigue, and some OCD. Dumb luck or God’s work placed us in the capable hands of a wonderful pediatrician who nailed the diagnosis within six months of onset, and we were prescribed an initial 3-week round of antibiotics. I was totally unfamiliar with PANS, so I thought our nightmare would end after the initial 21-day course. In our first 14 years, my son was NEVER sick, so my radar was off. His symptoms disappeared initially, so this PANS diagnosis faded out of my mind.
The antibiotics seemed to “fix” him, but the symptoms resurfaced about 8-weeks later and continued to worsen – quickly. I was slow to react, and my son deteriorated as a result of my ignorance. It was six months after the initial diagnosis before he was put back on antibiotics. I’ll never forgive myself for this unnecessary lapse, and for a year, we remained on Azithromycin along with 880 mg of Aleve daily. I hate that he was on a long-term course of antibiotics and all that Aleve, but I fearEd brain damage more (and PANS/PANDAS guru Dr. Susan Swedo agrees).
Simultaneously, we hooked up with my college roommate/functional medicine practitioner in North Carolina, who almost exclusively sees PANS/PANDAS, Lyme, and toxic mold/heavy metal patients. Again, this was either through dumb luck or God’s work because we hadn’t been in touch in 15 years. She met my son at a sporting event, I complained of his symptoms, and she immediately said, “He has PANS or PANDAS” and insisted we bring him to her office the following day. My exact response to her was, “Oh yeah, I think PANS is what the doctor diagnosed him with six months ago.”
She did some bloodwork and organic acid testing (OAT) and saw more than 26 deficiencies or markers that needed immediate attention. He was immunosuppressed and was malnourished with mitochondrial impairment. Through a regiment of supplements, vitamins, gluten-free diet, etc., we’ve been able to address each of these areas of concern. Our functional medical provider and pediatrician never spoke but were very aware of our dual approach and supported one another’s efforts.
We continued retesting with the functional medicine doctor every 6-8 weeks and tweaked the supplements, vitamins, and diet, and added herbs, but we never stopped the antibiotics. She could literally read his lab reports and tell us precisely how he had been doing with amazing accuracy before we shared any data with her. It is incredible to witness.
While he saw continued improvement, he was still sick though the flares became less frequent and less severe – but it was still bad enough that I continued seeking treatment.
Mostly out of desperation, I sought help from a Chinese Medicine Doctor. I have NO IDEA how Chinese medicine works, but I just thought it was worth trying acupuncture and whatever other treatments that might help. Interestingly, Dr. Lisa had no experience in PANS, but she also said that was irrelevant because, in Chinese medicine, you treat the presenting symptoms, not the Western diagnosis. But she cared enough to research PANS and even attended a PANS/PANDAS webinar.
She began acupuncture, cupping, and other Chinese therapies. We also then started CBD oil (a trusted brand) and different probiotics. At first, my son was reluctant to this approach due to “physician fatigue” …more appointments, more doctors, yuck. But, from the very first appointment, he started to feel a little better. Even after remission, he kept those weekly appointments For a while because they really make him feel strong, alive, and healthy.
So, where are we now? We 1+ year in remission! I truly feel that this nightmare is largely behind us. We still have minor flares, but they are less severe, less frequent, and shorter in duration. When he does flair, we work with our functional medicine provider to do our best to identify the trigger: stress, toxin (yeast overgrowth, mild, etc.), diet, bacterial, viral, etc. I’m confident that we’ve finally got this under control.
Next steps: We continue the gluten-free/organic diet (almost dairy-free), supplements, and vitamins indefinitely, but we weaned off the antibiotics, Naproxen, and CBD. Instead of the antibiotics, we are adopting an herbal mycoplasma protocol that our functional medicine provider has had GREAT success with…she uses antibiotics sparingly in her practice.
The road to recovery wasn’t smooth. We saw other physicians along the way who disagreed with the initial diagnosis, reported that his immune system was “normal,” conducted additional testing that indicated he was healthy – but they were all wrong. SO WRONG. At times, he was so desperate and so sick that I wanted to give up, and he wanted to give up.
I have guilt too. My biggest regret is that after the initial symptoms disappeared and our son came back to us, I ignored the symptoms for FAR TOO LONG when they reappeared. I don’t know why. He then got so, so sick to the point where he was completely nonfunctional.
My message to parents is to listen to your child and trust yourself. We all have strong parental instincts for a reason. I know there will be days when all you want to do is hide under the covers and shut the world out. But, perhaps there will be days when your child is healthy enough that you start to forget how bad it was.
It’s been a very challenging time, and I know some of you have been on this roller coaster for YEARS longer than us. But I wanted to share our rainbow in this storm. If you would like more information, please email Gabriella and she will forward your email to me.