Sunday, October 9, 2016
Today has been one of those days; jeans, long-sleeved shirt she hasn't worn in six months, hair in a pony tail, and no agitation or emotional lability to speak of. This hasn't happened in months. Fitting, as today is PANDAS/PANS Awareness Day 2016. We've certainly come a long way in just one week. No more huge nighttime fears, insomnia resolved, and only subtle/mild symptoms that I've been able to support her through. It's been one week of calmer, gentler nighttime routines. Grateful is all I can be. Well, grateful and worried but the "worried" comes with the territory. My little one is no longer in the severe phase of this 2.5-month flare but we are not back to 100% yet.
Each day I see some improvement but there are also setbacks. They call it a "saw tooth pattern" of recovery; up, down, up, down. I can do nothing but watch and hope that the ups are higher and the downs are fewer in between. As we bump along with sensory challenges, new symptoms appear. Familiar to me as they come in to focus I recognize the heartbreaking descriptions of each new symptom from the endless posts of mother's who got here before me. Like being surprised by a long-lost friend I never wanted to see again, I suddenly see in my daughter another facet of this illness take form. Out of the fog we check off another symptom and the reality is secured as another nail is pounded in.
Over the last two days my daughter has been tormented by the decision of what to wear, weighing the options of two pieces of clothing she cried saying she didn't know which was the right. No matter the reassurance she was tortured by this simple decision. It sounds trivial but it is paralyzing. With patience and love I stopped my efforts to reassure her and offered to bring the alternative choice clothing with us as backup. Relief. Once we get past the moment it doesn't return and the extra clothes were completely forgotten. The degree of upset caused by such a simple decision unnerves me. What will be next? My mind scans the files I've tucked away describing all the symptoms we haven't yet seen. Which one will be next. There are those I shudder to think could be ours one day.
But THIS morning, we had normal. Although clothing remains mostly torturous, this morning was the exception; a glimpse of what normal and healthy could be for my daughter and our family. I wrack my mind to find some explanation. As I've done for 10 months I review every detail. Why was this morning different? Was there a change in meds? Did she eat something different? Exposure to a germ? More time outside or less? More dairy or sugar? Accidental ingestion of Red 40? Maybe playing in a friend's basement exposed her system to even the slightest amount of dampness or mold? If it is a full moon parasites could be at play. Did I change the timing of a supplement? Is she getting sick? After 10 months of this I am starting to be able to rule things out but it still haunts me, this need to figure it out. A strength overplayed, a weakness leveraged. It occurs to me today that my tenacious attention to detail, this long-standing compulsive need to look in every crevice and consider every perspective and option, is finally coming in quite handy. I am putting the pieces together.
The other symptoms that come and go during the day are agitation and emotional lability. Frustrated by her little sister's taunts, a toy that won't cooperate, or when I can't drop what I'm doing to help her with something, my daughter quickly descends in to an epic meltdown, screaming things that she would never dream of saying when her brain is not under siege. It all sounds like it could be the behavior of a typical kid but I assure you it is not. There is an intensity to her emotions that do not come close to matching the circumstance; it's as if she's suffering an actual trauma, with shock and fear and panic. My adrenaline spikes and I go in to emergency mode, trying to catch her and hold her so she doesn't sink deeper or spiral away from my grasp. Deep breaths. She is coming out of it.
PANS has taught me, tested me, moved me to be better. I have grown stronger and wiser and more patient. I wait, console, and reassure her with each passing episode. Blood work results should be in within days but I don't know what, if anything, they will reveal. I'm experimenting with the timing of the three antimicrobial medicines to see if one of them is causing an increase in agitation. The remaining symptoms could be persisting because I suspect she's been fighting a virus over the few days. She's been coughing a bit and has been very tired. The medications are probably keeping something at bay but that something is in there pushing her just over the limit of her typical healthy behavior. I saw a decrease in appetite again and I am crossing my fingers that it is because of a sneaky virus and not a new symptom to battle.
The days leading up to this day of awareness I've not felt so alone. I've shared posts on my wall and in my old SPD support groups, spreading awareness of this awful illness. I've listened to some pod casts and watched videos from other pandas/pans moms. There are moments I want to shout from the rooftops but for my daughter's privacy I stop myself. This illness is still mostly hidden from those around us who see a shy, slightly awkward, but kind and bright little girl. What goes on behind closed doors and within the walls of her mind would startle most who know her. So I sit with this quiet little blog and I type. I have hope today, as I grow in my knowledge and my own awareness of how to help my daughter.
Strength, love and hope.
No comments :
Post a Comment