At this point in my life I consider myself to be a poop and vomit expert. I am getting pretty good at immune system and gut health 101, yet I really know very little about neurological symptoms. I know they are connected to the gut, but admit I have paid little attention and put all of my focus on the symptoms we label as 'FPIES'. As a result, the last three weeks I have once again felt that panicked run, as I headed up the steep hill of learning once more.
About three weeks ago we gave Ellie a microscopic dosage of a new probiotic. This is a probiotic we have been building to for a year. It is a probiotic that would show she was healing and that I hoped would push her into the realm of eating more foods.
That afternoon I put on her shoes and she headed for the door to the backyard. She stopped short like a stiff board, and there she stood, not moving,.... frozen for a good count to five. She then fell over the same way, bouncing off the table leg and hitting the floor with a thud. She laid still for another count of maybe 5, and then the screaming began. It was a scared, hysterical scream, and she fought me holding her or even picking her up. She used no words, and only grunted a weird growl at me when I asked her questions. When I looked close her pupils were not the same size. It took about 5 minutes for her to calm down, and she was no longer interested in going outside. She seemed a bit worn out.
In my head I thought 'wow, that was scarey and weird.' For several days I mulled it over in my head, and kept an eye on her. For the next two weeks we continued with the probiotic, spacing the dosages out farther and farther because her eczema was horrific and she did not seem to be tolerating it at all. We don't think she had another 'fall down' episode, but she would wake up screaming that same hysterical scream in the middle of the night. By the end of about two weeks her verbal abilities were a slurry mess, and she had lost complete words.
Needless to say, the last few weeks have been time of research, processing, and some good mommy panic. I remembered these 'thumps' prior to starting GAPS and had even blogged about them. I paid little attention to them, and they stopped a couple of months after starting her on GAPS. This is the first time I had witnessed the 'episode' from start to finish.
Yet never fear, God is always preparing the way. I have a colleague/friend whose son has epilepsy and I ran the information by her. I also now have a long distance GAPSkids friend whose daughter has Dravat syndrome, a severe form of epilepsy. I was able to get insight from her from a GAPS perspective. And that Rockstar GAPS doctor we love...well her first doctorate happens to be in neurology. I had listened to some basic information on seizures from her sessions at the WAPF conference in Dallas.
I emailed Ellie's doc (Dr. Cowan) just to let him know and confirm I should stop giving her the probiotic. Of course he said yes. I think in the back of my head I hoped he would tell me it would stop and get better and that this was just an adjustment period. I knew better. I knew that it wasn't. I knew that pushing through symptoms of something wrong was just a ridiculous way of ignoring the body's warning signs. These symptoms had caught me completely off guard. They were frightening.
It took 7 days for Ellie's verbal skills to return to 'normal'. It has been 2 weeks since the last dose of this problematic probiotic, and her eczema is still a disaster. Her cracked arms and legs keep her up at night, and bleed from her scratching. While we wait for her body to heal, we tweak her next steps. The plan changes again, and I delve into learning about neurological symptoms. We adjust. The plot thickens. The complications increase. And I get used to the idea that my FPIES toddler is also prone to having seizures.