Sunday, February 12, 2012

I Wish It Was Different

For the first time in years, Lance is well enough for me to leave him for a few days to go and visit my family in NY. Its been over 2 years since I've seen them, between the time and the distance and my son's illness and the total lack of funds to get there. So this is a very special trip and I am so grateful to be here.

I am having a very sweet time here with my sisters and family, but this morning I feel so melancholy. Its because I realize how isolated I am in my life with Lance, and how little we have and make due with compared to other people. Well, every single penny I have every month beyond basic bills goes to Lance’s medical appointments that are completely uncovered by his insurance, and to his school. So we can invest nothing in improving our home or my closet or go to Hawaii or anywhere for that matter, and I feel so sad about that right now. I have lowered my personal standard of living, slowly, piece by piece, day by day. as my child's health fell apart and we were lost in a maze of tragic confusion and a string of health care providers who knew nothing about what was happening to him or what to do about it, and none of which were covered by Kaiser. We lost our mobility, our sanity, our money, our family and our dreams to PANDAS.

I am grateful that I am able to just make it on my own with him, and get him most of the help he needs, and have him in a great school where he is thriving. but I would rather have any semblance of a normal life, with a normal child and a normal home and not walk around taping up holes in my only pair of sweatpants.

Last month, I took Lance off of antibiotics for about a week. It started with the stomach flu, a really nasty bug, so I stopped the antibiotics just to give his intestines a break. I started giving him just lots of extra probiotics and andrographis, as I heard some other families doing. About one week later, he had a terrible strep throat. Of course I got him back on zithro right away and overnight the symptoms began to abate. But he ended up getting tics. It was like, it woke the Sleeping Giant, and while it was never as bad as it could have been, it made him crazy for a couple of weeks, and just when it peaked and I was about to start him on a prednisone burst, it let up. So he's much better, and I was able to leave and just escape for a few days. I have beat myself up a million times for having taken him off of antibiotics for any reason. And i bet he has strep in his tonsils, it just makes sense, so we are going to check that out in the next couple of weeks and i imagine that over spring or summer break, he will be having his tonsils out. I bet there is a wad of biofilmed embedded strep in that boy's tonsils.

Anyway, thank you for whomever is reading this, for listening.

We PANDAS parents often stand in isolation but together we are changing how the world views PANDAS and helping our children get the support they need and deserve to live a better life.

Much love to you.
Amy