As I write this, I am drinking a glass of wine. Well-deserved, I would say.
I cried in front of my daycare provider today. I felt pretty stupid. I am starting to very slooooowly rally, but it still sucks. When we have great nights, followed by awful mornings, it makes me wonder how long I can survive this roller coaster. I mean, I can't hardly stand to leave the ground. I have to mentally talk myself out of a panic attack when we hit turbulence on an airplane. I lose my shit on th Tilt-a-Whirl, for God's sake.
I called our PANDAS doctor yesterday, about Catherine ear infection. Or the ear infection that is just beginning. They called me back about 3:00 and pretty much said: YAY the penicillin will work for Catherine and SORRY, the tics worsening is just part of the disease and OH NO, she has another ear infection? Call the ENT.
I called the ENT, but since he's new and I don't know what I am doing, I got the voice message system "too late." So if you call after 3:00, you cannot leave a message. You have to call back the next day. Umm, seriously?
So, I call this morning. Again, only about a possible ear infection. The nurse tells me the ENT doctor is OUT OF THE COUNTRY right now, and won't be back for a couple of weeks. So I should call my primary care physician. Are you fucking serious?
So three phone calls, and two days later, I have NO CALL BACK. No wonder people skip the doctor and go right to Urgent Care, which I may just do tomorrow.
Otherwise, I had a really great phone conversation with a now-friend of mine. I say now-friend, because before, she was my bosses wife. And now, this shitty disease has united us. We are meeting for dinner on Thursday night, with another PANDAS mom. Side note: doesn't "PANDAS mom" sound so cute? It's not.
From here, I am learning all sorts of new things. Herxing, and blood-brain barrier, and Bartonella, and mycoplasma, and co-infections. It's loads of fun. Hence, the glass of wine.
My now-friend told me the other night that she has pretty much had to piecemeal everything together.
There are doctors who have never heard of it. Don't go to them.
There are doctors who have heard of it. Don't go to them either.
There are doctors who have heard of it, and have patients with it, but they have been referred elsewhere, so don't go to them.
There are doctors who have heard of it, seen it, and try to treat it with ONE remedy. ONE. Which usually doesn't work. Don't go to them either.
There are doctors who have heard of it, seen it, have tried to treat it a couple of different ways, and keep searching for answers. Try to see them.
There are doctors who have heard of it, seen it, tried to treat it several ways, and are now on one of two boards in the country as leading "PANDAS" researchers and doctors. If you go to them, they will use you as an experiment and ask you to document behaviors nine million times a day. I am sure my day care provider would LOVE that. My checkbook would also LOVE a trip to a doctor that is out-of-network. Or better yet, not covered.
There is a doctor in Missouri who is one of the leading researchers in the Nation regarding PANDAS, who IS in-network. His wait-list, as I found out when I called, is THREE MONTHS OUT. Better yet, he's not accepting new patients. So I need a referral. FUCKING REFERRALS. My whole life with Catherine has been a referral. Do this, do that, try this, try that, she's too young, it's not her ears. BLAH BLAH BLAH.
I called the naturopathic doctor back on Monday, who I was impressed with when she called last Tuesday. Eric and I decided that we would try it. Who knows? Maybe it will work? I know they do a ton more testing than regular doctors, which seems really backwards to me. $400 for two appointments. Not terrible. We will fork it out. I don't want to think what it will be for the testing, but this is also my baby girl. She's a little more important than cash.
I have joined what feels like a thousand PANDAS groups. It seems rash, but when there is hardly anything out in the medical field about this relatively new disease, I want to know what other moms are experiencing. I want to know what other mothers are facing. Of course, none of them have positive, feel-good stories. All of them have, "This med stopped working - what now?" stories. It's heartbreaking, but it's good to face reality as well. This is what we have to look forward to. As one doctor put it, there is no cure, only management.
So we will manage the shit out of this. I will rally, once I get my shit together (any day now, would be nice). I will be the voice for Catherine because she hasn't had one. I will love her unconditionally, and fight for her twice as hard.
Catherine has a picture that I painted above her bed that says, "Decide what to be, and go be it." So i will be the best damn mother I can be for Catherine. THE BEST. Good thing I was born with horns and a tiara.
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