Well, things have been interesting the last week or two. We began with a change in our homeopathic remedies which had little man more interested in leaving the house. Since these things were often sporadic, it left me little time to plan and there were a few times we fell off the strict diet wagon. So while I am thrilled we are leaving the house, it does present some challenges. We have seen more rages recently than we had in a while and his anxiety seems to be especially pronounced but again, when he is not raging or worrying, things are fantastic. And to think, I have always liked roller coasters…
So, like I said we began with a change in remedies. I spoke with Alan and we both agreed that the phosphorus* seemed to be helping most, so we increased the dose to see if it might help him even more. We also added medorrhinum to help with the raging, general aggression, and bed wetting. I noticed that his mood on “phosphorus” days was much better than the others and approached Alan about having him take these three times a week instead of the original two. For some reason, it does seem to give him a more even keel. And while I was a bit skeptical of the medorrhinum at first, the day he took it HE DIDN’T WET THE BED!! He also had a “dry night” the next two nights. For anyone who has ever changed sheets in the middle of the night, can you imagine doing it EVERY night? So yeah…this was a big deal.
Little man decided he wanted us to go out to dinner one evening and was rather particular about where we went. We pulled up to a great organic restaurant called True Food Kitchen and he had a massive anxiety attack shortly after walking in the door. We headed back to the car and he insisted upon Buffalo Wild Wings. Why? I have no idea. He and I had been there once about a year earlier as it was the only option (other than the Tilted Kilt) while we were out shopping. But…when your kid has been a hermit for 6 months, you suck it up and go.
Well, our food took FOREVER and it was getting late. They screwed up the order and brought him fried chicken nuggets inside buns and fries (definitely NOT on the diet). I took the buns away and pulled some of the breading off of the chicken, but he was hungry and on the verge of a meltdown. We chose the lesser of two evils and let him eat. It was the beginning of a bit of a backslide for us. He insisted on going there once again last week and had a few fries which did not bode well for a fun evening. And then two days ago, we took a spur of the moment detour to Knott’s Berry Farm and well, you get the picture. I will say that he has always been a pretty good monitor of his own healthy eating, so he chose burger patties and had only small handfuls of fries plus some fruit or veg.
Knott’s Berry Farm was interesting. Roller coasters used to be one of his favorite things. He went on his first upside-down coaster (California Screamin’ at Disney California Adventure) when he was only six and immediately asked to do it again. That was a feat I did not attempt until at least 12, though he and I share (shared?) a general love for roller coasters. This trip had him paralyzed with anxiety just looking at the rides in Camp Snoopy. He would debate himself and ask countless questions and say he wanted to go, but then again, he didn’t. We finally talked him into going on one and he was too petrified to move when it ended. We opted for gold panning and watching the glass blowing instead, which was fine with us, but disheartening to know it was such a struggle.
We also spent a couple days with my in-laws, which was overall a good experience. There were a couple of incidents that could have become more severe, but thankfully didn’t.
Last night, he raged for nearly 3 hours before finally falling asleep at 10:45, but he woke up happy and had a relatively good day at home. We are going on day six of “dry nights” however his anxiety was high when we talked about tomorrow’s schedule at bedtime.
So, here we are. In the thick of it all. The highs and lows. The roller coaster of emotions for all three of us. When we began this healing journey, I am not sure what I thought. An optimist at heart, I suppose I thought that after a few weeks of homeopathy, I would have my baby back and we would carry on. It all seemed so simple, and I hung my hat on that hope. My hope has not dissipated. Not even a little bit. But the highs are toying with me. Days like today I feel like he is back and the next thing I know, he falls all the way back to the raging, spitting, punching, screaming behaviors comparable to the Exorcist, that make me feel like this road will be much longer than I had initially hoped.
Some days, I feel guilty for expressing myself. I know my son will recover. I know others who have been fighting much longer than we have. I hear stories of 15 year old PANDAS kids breaking every window in their homes, of 13 year olds who have not left their rooms, and of other children who are ill or have passed. I worry that our plight isn’t “bad enough” for me to talk about publicly or ask for prayers or support. And then I get a message from a mom who is on this PANDAS journey and she tells me “thank you for saying all the things I haven’t had the strength to say and for educating people about PANDAS. It makes me breathe a little easier.”
And that, my friends, is enough.
Hope and Healing,
*Please note that phosphorus is a constitutional remedy and should only be taken by persons identified as amenable to it.