Blog This SH*#$

Thanks to a dear friend and fellow blogger, I’ve got my fingers on the keys, again. Not that the nudge will get me back to blogging regularly, but today, I will. And maybe tomorrow. Facebook and twitter just seem so much easier. So much faster. But I miss blogging. So here goes.

My sons were never vaccinated. I get grief about it from people quite often. But never from doctors. With the history in my extended family and with my kids living on the edge, it’s just a good thing that I didn’t do it.

But, the whole PANDAS diagnosis/research seems to volley around the issue of vaccines. What does an unvaccinated kid who gets a “strep on steroids” infection look like? How do we treat him?

The answer so far? We don’t know.

So, yesterday, I packed a rental car full of things to do and food to eat and went to see a doctor that seems to get both Lyme and PANDAS, at least a little bit.

The journey was worthwhile, as always. I made him laugh. The little guy made him laugh. He made me cry. All in a day’s work for a mom parenting kids who live on the edge. And he told me that you usually see a connection between a PANDAS diagnosis and vaccines. Not in my world. So it seems more complex, again.

Sometimes I forget how sick my kids are. Especially the little one. I just keep keeping on, and the doctor visits are highlighted with all the good. The “upward spiral” and the “good grades”. And other days, we look at the shadow. The under belly. The sh#%(.

My kid is sick. Some days, I just don’t even want to talk about or think about how complex his issues are. The hardest part is that so far, I haven’t been able to find anyone who really gets what’s going on with him. If I were a different kind of parent, I might just look at him, ignore the dark circles under the eyes and just keep keeping on. But I don’t. I push for answers. I push for him to get well. I hope that the teenagers frankenstein-looking lymph nodes doesn’t mean another flare is on its way, or that I’m too busy helping one kid that I’m playing ostrich with the life of the other. I search for treatments, money, the next great hope for a cure. Heading down to the lab to get some subclass deficiency and immune issue tests. But waiting until AFTER Valentines Day. Blood draws WIPE this kid out.

It’s not one thing. That, I know. If it were, I’d be selling some sort of MLM product that had cured us all. Instead, I’m back to the Rubik’s cube. Or just STILL HERE.

 

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3 responses to “Blog This SH*#$

  1. Hi Tillingmama, it sounds like your child has lyme AND coinfections. I know because my whole family has lyme&co. Your boy can get well with correct treatment. The trick is finding a doctor who knows how to treat him correctly. There are pediatric lyme specialists. Have you tried calling 610-388-7333 (www.LymePa.org) for a referral?
    I wish you all the best.
    Miriam Manotti

  2. Haha I am so glad you blogged this shit…but what is the next step from this doc?

  3. My son 5, has PANS and congenital lyme

    He is also not vaccinated.

    As of Dec 14 , 2011 my life has been hell.

    I can’t believe there is a mom and a kid out there like us.

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