10 Things I Love About PANS/PANDAS

Image result for loveI know, what in the heck is there to love about a disease that turns your world upside down in all the wrong ways? Still, I believe there is a natural balance to the Universe, good-bad, loud-quiet, hungry-full…PANS/PANDAS – STRENGTH. Here’s my thankful list of 10:
1. FEWER FEARS: I’m not talking about snakes and spiders, but since P/P entered my world, I’ve had to step out of my comfort zone every day. I have increased confidence, more courage, and grittier grit. Situations that would normally scare me, I now face head on.
2. PATIENCE: I don’t think my old self would recognize my new self today. Putting me in a room with a kid screaming all day would have drove my old self batty. I’ve been doing that now for over two years. Patience is a mental workout, and I can do squats all day long…mentally that is.
3. I CAN TALK LIKE A DOCTOR: streptococcal, Sydenham chorea, intravenous immunoglobulin, prednisolone, haloperidol, risperidone, plasmapheresis, basal ganglia, caudate, putamen, aseptic meningitis, dysgraphia, Lysoganglioside, tubulin, antibodies and antigens… so maybe I can’t spell them all, but I can definitely keep up in conversation.
4. LESS COMPLAINING: this one’s weird. I have so much more to complain about now, but I don’t. I don’t have time. I have to get sh*t done.
5. GETTING SH*T DONE: from writing appeal letters to insurance to cleaning flour out of every kitchen drawer EVERY morning – I’m a busy bee and so very productive. Remember the days of being bored? HA!
6. LIVING LIFE TO THE FULLEST: it’s not about traveling the world, trying new and exciting things (though that helps), or X-ing off that bucket list. It’s about real happiness, true sadness, lots of madness, and chasm-deep inspiration. When I laugh now, it’s more real than I can ever remember. When I’m sad, it’s not because my short story was rejected, but because my son was denied health care, again. My emotions are deep, and I am more alive than ever.
7. HOPE: this one is important. Too many days, I’ve not had much or any hope at all. Abandoned by doctors, missing friends and family, mounting costs of health care, losing sleep/health/sanity, watching my child literally wither before me as he starves himeslf…still, somehow, hope never completely disappears. I have children who need it and a husband who depends on it. I cannot abandon hope no matter what. If I have to, I will unearth it from a cave in Timbuktu!
8. NETWORKING: I’m a writer and am in touch with people across the world, but I never imagined connecting with families for a cause as important as a severe brain infection. We are strangers, and yet, immediately a team, fighting for a common cause (to save our child(ren)/family), digging each other up from the deep, knowing what no one else could possibly know. P/P parents get it. They KNOW.
9. MATERIALISTIC, NOT: In the pitches of OCD rages, I’ve lost many materialistic items, from favorite jewelry to televisions, furniture, and treasured possessions. However, I can live without these things. I am living without them. I don’t really need them. Now, I know what I need to live, and not even a bed makes the list anymore. Hardship isn’t for the weak, but what it opens our eyes to, is priceless.
10. GRATEFULNESS: Even in the darkest hours of P/P, there is much to be grateful for. Resorting to thankfulness for a roof over your head can be even more depressing and sometimes shock one into how much they’ve lost, but that’s just it- a home, no matter how damaged, a family to turn to, no matter how much they don’t understand, or food to eat, no matter how cold it is, that is much and sometimes, all that matters.

So there’s my list of 10 things I like about PANS/PANDAS. I didn’t put those cute little black and white bears on the list because honestly, I really don’t like pandas anymore.

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IVIG vs. Hormones

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IVIG = Intravenous Immunoglobulin. It is used to treat autoimmune infectious diseases, like PANS/PANDAS, Kawasaki disease, Guillain-Barré syndrome, lupus, and others. It is the antibodies in your blood, and one IVIG bag can contain antibodies from a thousand donors! No wonder it is so expensive. For PANS/PANDAS, the treatment is a 14-18 hour procedure split between two days. Our son has had three, none of them covered by insurance. Each can range between $8-15,000.00.

Of all the treatments we’ve tried, IVIG does help. It takes a few weeks to notice the difference, but OCD does calm down, and sometimes completely disappears (for a time), the rage is gone, our son will eat in front of family and friends again, sleeps better, has less separation anxiety, and can interact with friends and play with his sisters. That is HUGE! To have him act like a normal child again was beyond what we thought was possible.

The only problem, the only two very big problems, is that one, there are side-effects that are severe and intense. Twice, he’s had what doctors call aseptic meningitis, in which he has extreme headaches, light sensitivity, and nausea after receive IVIG treatments. We rushed him to the hospital the first time, as it was so intense, he was vomiting and screaming uncontrollably. The second time, we went to urgent care where they prescribed Zofran and Ibuprofen. He then slept it off for the next two days.

All that coming after two very intense 8-hour IVIG procedures, not to mention the costs of all it, makes us question doing more IVIGs in the future, especially since a month after the last one, when family members became ill, our son went through another extreme flare up. We wonder if it is even worth doing more IVIGs if they can’t protect against future contact with outside sickness/infections.

But now, we are heading into another dark period after what is now his 4th major relapse. His OCD, eating disorder, tics, separation anxiety, improper urinating, rages, and moods are at an all-time high. OCD won’t allow him to take antibiotics regularly because he thinks people are trying to poison him (and the side effects of antibiotics on his delicate system are awful anyway) and therapy is totally out of the question and ineffective regardless.

However, puberty is around the corner. Research has shown that PANS/PANDAS improves with puberty – something about the antibodies getting rewired in the brain with hormones coming into play. Our son will be 13 in October. I never thought I’d pray for puberty, but I am. I am sooo looking forward to it, with him but maybe not his twin sisters. Honestly, dealing with teenage hormones will be a respite from PANS/PANDAS. Let’s just hope P/P doesn’t scare the hormones away! That would be our luck.

It’s the Little Things

the little things

It’s always the little things that eventually add up to big things. PANS/PANDAS is a big thing, but it’s filled with many little things that make life so excruciatingly difficult. Turning on a light switch at the wrong time or stepping into a forbidden room can ruin everything. Who would have thought that not touching the opposite wall would result in spending the next two hours cleaning up flour, rice, and cereal all over the kitchen floor?

I think a lot about the little things lately. Taking the dogs for a walk seemed pretty minor to my old self, but now, that is sometimes unfeasible, along with having a summer fire outside (the smoke will ruin things) or eating off real dishes (they get thrown away, and we’ve stopped buying more).

The little things control the big things now. But knowing this means there’s a formula. If we can create positive little things, those too might control other big things, like sanity and some scraps of happiness. I call these Mini Magic Moments, when I stop thinking about PANS/PANDAS, and enjoy the moment in front of me, even if it’s watching my daughters spread weeds throughout the yard!

(note: the pic is not of my daughter, but they both do look similar)

 

 

Acceptance

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Most days, I feel lost. There are too many daily challenges threaded between so many absences in my life – social interaction, sleep, peace, fun, work, health, not to forget my very sick child, my crumbling relationships, and the constant need to escape from what I cannot accept.

I have not accepted this life. What life? I ask. This isn’t a life. How do I accept a life that isn’t a life? Because it isn’t the life I expected.

I expected to accomplish simple things – go to the store when I want or out to dinner, to see friends, have family over, take vacations, and enjoy weekend adventures.

I expected my child to attend school, play sports, and partake in school activities. I expected routine schedules with the occasional sick days.

I did not expect to be a 24-hour caretaker of a child with a debilitating disease, to skip birthdays and Christmas’s, to be confined to a 300-sq-ft space.

I did not expect to spend my days arguing, cleaning, fixing, soothing, and arguing and cleaning all over again.

I did not expect to be abandoned by doctors, friends, and neighbors. I did not expect my child to be denied healthcare coverage. Ever.

I did not expect rareincurablecontroversial, risky, complicated or unknown.

I did not expect to be alone.

And so, I have not accepted this new, so-called life. But it is a life. I am alive. I have children to care for. A husband that needs me. Pets that depend on me. My responsibilities keep me tethered to this reality, this life of PANS/PANDAS.

I have to accept this new life that I have, the one I did not expect. It is mine to live. No one can do it for me and few would. If I don’t accept this life, it would seem that I cannot live it either.

Acceptance isn’t surrender, right? Isn’t it the first step to betterment? Maybe. I hope.

I’m usually lost, somewhere in nowhere, but today, I will take the first step toward acceptance. This life is the only one I have to live. I’d better get walking; it’s still a long road ahead.