When it's not their fault...
Updated: Dec 30, 2018
I have alluded in previous posts about some behavioral challenges we have had with our 7 year old. I have been on a journey of finding out the WHY behind her behavior for over 3 years, and to say it has been frustrating and exhausting would be an understatement.
We have cut out food allergens that were causing inflammation and irrational behavior, rages and meltdowns and have seen tremendous improvement, but I still felt like there was an underlying issue. Call it my intuition, my mommy gut, what have you, I just could not let go of the feeling that there was something bigger going on beneath the surface in my kiddo and no about of change in our parenting strategy was changing it.
I have been very close-lipped about the struggles we have faced because of the judgements we have faced, as well as wanting to protect her dignity and story.
I began researching PANDAS/PANS about a year ago and felt like some of the symptoms fit but knew that I would have a difficult if not impossible time getting her doctor to do the labs, much less find a treatment that would not do further damage to her immune system. Some of my clues that there was something off were that whenever she would get a cold, seasonal allergies, or she came in contact with food triggers, she couldn't control herself at all. Mood swings were non stop. She was prone to rages and irritability and angry outbursts. The worst part was- we were all helpless to stop it. She actually physically did not have the ability to do any better.
Let me back up and say that PANDAS has been around for a long time. It stands for Pediatric Autoimmune Neuro-psychiatric Disorders Associated with Strep infections, and they are just barely beginning to scratch the surface in how this bacteria affects some kids neurologically, and how to treat it without further damaging the gut and immune system with antibiotics.
We recently found an amazing doctor up here who functions like a functional medicine doctor. For the first time in my 7 year olds life, I didn't have to push the research and make suggestions. He made every suggestion I would have made and ordered a whole ton of labs to see what was going on with her gut, neurotransmitters, immune system etc.
Lo and behold... her strep antibodies were off the charts high. What is BAZAAR about that is to my knowledge, she has never had a strep infection. Meaning that she never had the classic symptoms of strep- sore throat, fever, rash... none of it. However, her younger sister had it and so that is likely where she got it from.
How in the world does Strep affect the brain? Well, in PANDAS, the bacteria crosses the blood brain barrier which is this beautiful layer in the brain and spinal cord that protects the brain from viruses and bacteria. The immune system then goes after the bacteria, but due to molecular mimicry (meaning that the brain tissue looks very similar to the bacteria), the body begins to attack the brain tissue- usually the limbic system. The limbic system is the part of your brain responsible for fight or flight, emotional response, and memory processing.
Some of the behavioral diagnoses linked to PANDAS are:
obsessive compulsive disorder
rage or aggression
hyperactivity/inability to focus (ADHD/ADD... Just to name a few.)
Standard treatment of the strep bacteria is a hefty dose of penicillin, sometimes prescribed for a very long time, IVIG, and steroids. However, we know that overexposure to antibiotics is not healthy in the long term for most people, and can cause further damage to the gut and brain connection. IVIG is effective in some PANDAS patients, and steroids tend to work only as long as they are being used.
There are several alternatives to treating PANDAS/ PANS (PANS refers to the same above symptoms but linked to ANY virus that inflames the immune system causing neurological/psychiatric symptoms), one of which is Monolaurin, and heavy doses of probiotics to rebalance the gut bacteria. Supplements to heal the lining of the gut so that kids can begin to make their own neurotransmitters, as well as heal from the food sensitivities that go along with it.
Here is an excellent article on some of the new research that is being released. It is fascinating and I applaud the tenacity of these researches to find alternatives that bring HEALTH and wholeness- not just a temporary stop to the symptoms.
This road has been LONG. I cried more than once this last week- feeling relief that we have some answers. Feeling affirmed because I knew it wasn't "just" a behavioral issue, and hopeful that we will see changes over time!
If you have a kid with any of the above symptoms, get them tested! It is a simple and affordable test, and while it can take some time to resolve, it beats putting them on a medication unnecessarily and dealing with unpleasant side effects.
Above all- follow your gut! If you feel like things aren't quite right, then it's worth investigating.
If you need help and are not sure where to start, please email me at firstname.lastname@example.org to set up a free consultation. I love working with parents and their kids to find the best treatment, help navigate the healthcare system and complexities of care that come with behavioral issues. Click here for more info on nurse coaching and consulting.
To your wellness,