We put her to bed on that Friday night, our little five year old, after the first week of kindergarten. I couldn’t believe that my littlest was in full-day kindergarten already! She went to bed like she always did. We prayed, and we sang, and were grateful for a good first week. She was certainly tired out from all the new things. She sure loved her kindergarten teacher, who was so kind and gentle. Big brother had just started third grade, and he had accompanied his sister on the bus all week long, looking out for her, and certainly giving her an un-spoken strength. She conked right out, and my hubby and I played with the cats, watched a little tv, and headed to bed, looking forward to a great weekend together.
Saturday morning, she had a different look in her eye. She wasn’t her usual, carefree, skipping-everywhere, afraid of nothing little lady, who would play with the cats, her toys, the play clay, her art supplies and her brother on a Saturday morning. She looked lost, distant, and like her usual bright and fiery flame had been dimmed…We were making breakfast and I remember her coming over to me, and she was so sad, with tears in her eyes…and she said, “mommy, mommy, I don’t know what’s wrong… I just feel so sad!” and she cried gently, not a fit, or super upset, but tears of sadness, and as it turns out, new tears of fear. We hugged her and held her, and just thought that this must be something new in relation to starting school, and hopefully it would get better. But it was SO ODD! She hadn’t exhibited this behavior before; she was always bright and happy and never been depressed seeming or down in the least. I was concerned, and so was my husband. I sure hope this goes away as quickly as it started, I thought….
From that day forward it became a constant, confessional telling of worries, fears, and recalling things from a few years back that happened- just things she saw or said or did, that we would have no idea why she would even think of them or fixate on them…it was the strangest and scariest thing we ever witnessed. (I now understand why she was doing that, as the basal ganglia being inflamed causes fears and worries and memories of things to come forth- that is the area of the brain where fears and past anxieties live, amongst many other PANS/PANDAS related things)…WHERE DID OUR GIRL GO? Our pediatrician said it was normal for a kindergartener to go through these things and have separation anxiety, but she had always been so well adjusted and trusted that mommy and daddy would come back-she was not a separation anxiety kid– and why would this change over night? We would get kind notes from her teacher once in a while about Our daughter feeling blue, or she would tell me at pick up that She was teary most of the day, or really sad about something. Her behavior continued in earnest so I started to do some research and found PANDAS/PANS (and almost couldn’t consider the possibility- it seemed so incomprehensibly frightening and misunderstood) and we went to see a child therapist to ask for advice. The therapist, like the pediatrician, also said it was a normal part of brain development at her age and said it would diminish and then resurge again after the holidays in January, which indeed it did, for about a month, and then it gradually diminished and subsided. I think I did even take her back to the ped. and they tested her for strep, based on my prodding, and it was negative and they did not pursue anything past that. And neither did I. We let them lull us into complacency. I deeply regret this. We could have started to help her SO much earlier.
In July of that year, we had a big move to a new state, and she did SO great. Minimal anxiety; we were very positive about the whole process and it really made a difference to the kids. In September, she started first grade at her new school. The first couple of weeks were okay, and then BAM!!!! the fears, sadness, confessional anxieties and worries were back in earnest, practically overnight. I am not sure why, looking back at it now, but we didn’t see anyone about it, maybe just because we were just getting adjusted and I was overwhelmed…but we loved on her and helped her for those months, Sept-December when it was so bad in a flare again, and it followed the same pattern-got better over the holidays and then came up again in January, gradually diminishing. I think she was still sleeping in her bedroom and even though there were some pre-bedtime fears, she would mostly sleep all night during this second flare. She wasn’t sick, maybe occasional congestion, but I took the kids to a new chiropractor here and he helped manage any cold that started to come on. I would have to say the difference after that second flare compared to the first, is that it perhaps left some tics behind….some skin picking, more of a need to control and some OCD tendencies like lining up of her stuffed animals, bed covers needing to be a certain way. She has always been a child who benefits highly from knowing the schedule for the day and having a plan. She learned to read very well in first grade but struggled with math and organization, but I think that was more of a product of having a huge class and a grumpy teacher more than anything. (Also- basal ganglia again- math skills.)
So, then we had a mostly happy little lady, from early spring until autumn rolled around.
Her third and WORST flare came the following fall. She started school in September 2014, and the flare didn’t really start in earnest until about a month after that. It came on and seemed to coincide with the scariness of Halloween, and she went to a birthday party at a bowling alley and a music video was on where they were tearing apart stuffed animals and she had a breakdown and it seemed to be a trigger of an avalanche of fears and worries and night wakings and confessional OCD like we have never seen before, also some throat clearing tics. Lots of tears and “I am so sad” and wasn’t sure why. This time, I FINALLY realized that this was NOT NORMAL, no matter what pediatricians tried to tell us, and we took her to see a wonderful, knowledgable, PANDAS/PANS friendly pediatrician two days after the onset. He was VERY receptive and agreed with thinking this is PANDAS/PANS and ordered some tests, (blood work and stool testing) to see if we could start to figure out some clues. I’ll get much more into testing in a future post.
We also told him we were obtaining her gene profile via 23andme. No strep showed up on the bloodwork. A little in the gut, but everybody has a little…we would still work to annihilate it. The doctor stated that her initial brain swelling and likely autoimmune reaction was caused in part by vaccines, but added that all we can do is move forward from here. The genetic specialist told us that somebody with her genes should have never been vaccinated, due to her inability to detoxify. We would undertake a plan to heal her from her vaccine injuries, help her body to learn to detoxify, and take one thing at a time. Her little system had reached a toxic tipping point. And I was going to fix it.
We would then begin a massive detoxing of her little body. Starting with the tweaking of what was already a healthy, veggie-filled diet (she loves healthy things to eat, so that made this part easy,) we went further toward an autoimmune protocol, totally gluten free, Paleo, low processed food (none for a while)-feeding her the right things in order to reduce the inflammation in her body.We began to see a homeopath who specializes in these types of conditions in kids. I took her to my acupuncturist, who started her on some herbs, and those seemed to help almost straight away. She really started to come out of this flare the second week of Christmas break, and then we began her on the Chinese herbs on January 6th, and the homeopathic remedy on January 19th, and then it was steady improvement from there, sometimes two steps forward and one step back. From there, we did many, many other things, which I will address in a future post. I could write for days.
We were a VERY tired and worried house, and very much hunkered down in order to focus on relaxation, eating healthy foods, exercise and quiet time, really just trying to normalize things for her as well as the rest of us. As a mom, this time when we really decided to pursue finding out what this was all about, I very much went through a grieving process for several months. I just want our girl back, not just for me, but for her! I want her to have a happy childhood! We tried to come to acceptance of the potential long road that might lie ahead for our girl, and for our family. I think it was a realization that this is something very serious, very misunderstood by doctors, and also something that is sort of private- because so many people don’t care to understand illnesses when they are having to do with anxiety and tics and the like, so it felt very isolating for me as her mom. Some extended family tried to help and understand, but from others, the silence was deafening.
Luckily, I became involved in some PANDAS/PANS groups online very early into her third flare, and the information, friendships and community I received from some of the folks on there, from all around the world, has proven invaluable…actually- vital. I wanted my baby back. I wanted my brave girl, my unencumbered girl-I wanted her to be happy, so she could have her childhood back. I will go to the ends of the galaxy to make this possible for her.
Up next-What we’ve done to help get our girl back.