I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Tuesday
Jul032012

Diving into Murky Waters

I am a mouse in a giant maze. I keep running 'round corners and I can't determine how to get out.  Where's the magic that will cure my son?  I can't let myself be trapped. I can't get trapped. I can't, I can't.

There must always be another option, another path to take.  What is the use of all this researching, all this suffering, if we are going to end without solving anything?  The Lyme doctor doesn't want to treat my son unless he's on more psychiatric medicine.  My son's therapist, who DOES take insurance, whom he adores, is too busy to see him and doesn't quite "get" the whole PANS thing anyway. 

We have appointments to see:

(1) a psychiatrist who actually understands PANDAS,
(2) another psychiatrist who is great with people suffering from Lyme Disease,
(3)  a social worker who counsels children who have Lyme, 
(4) a psychiatric nurse who will help my son deal with his OCD and tics via a cognitive process and
(5) a homeopathic doctor.

Just watch the cash register spin and jingle. Not a one takes insurance.

In the past, one after another, doctors told us that our case was "complicated."  Just what a dad and mom want to hear.  Even recently, the Lyme-Literate doctor used that language.

Sometimes antibiotics alone are enough to help a child with PANS. Often, IVIGs or plasmapheresis work wonders.  We saw small changes with the IVIGs, which is how our doctor determined that we needed to test again for Lyme Disease. Antibiotics did nothing but put my son over the edge and discolor his teeth.  

I'm allergic to most antibiotics.  Given that we've had my son on antibiotics for 10 months, with not much result except for more frequent rashes on his back, and then a huge flare-up of symptoms, they just might not be the right thing for him. I'm sure there's a genetic component there. After research, discussions, and much consideration, my husband and I decided to see the homeopathic doctor who has helped a number of these kids.

She was the first doctor to NOT tell me that our son's case is complicated.

But there's time yet for that.  

I gave him the first homeopathic remedy on Saturday. No change at all yet.  Meanwhile, our first appointment with the psychiatrist has come up.  I debate--do I go? The argument goes like this:

Angel on my shoulder:  Psych meds will not help the homeopathy, might even negate it.  Why would you botch it all up now?

Devil on my shoulder:  But the day-to-day crises demand that we make a rapid change. Calm him down. Do it now.  Or he might have to be hospitalized.

Angel:  You just spent all this time, money, emotion, hope on the homeopathic remedy. Give it a chance (repeat chance, like a mantra.)

Devil:  He's not sleeping through the night. Neither, therefore, are you.  You're exhausted, your daughter is distraught.  It's all a nightmare.

Angel: So many other people are seeing positive results with homoepathy.  As the doctor said, nothing is immediate.  It's more like a marathon.  You wanted to be able to plan ahead, like a bike race. Here's your chance (echo on "chance.")

Devil:  We were lucky enough to get in to see this amazing psychiatrist. He specializes in PANDAS.  You're going to throw that away? You can always go to talk to the MD and not fill the Rx right away.

Angel:  Sure, go to talk to the MD. It's only $800.  And you already spent money on the homeopathy.

Devil:  With nothing to show for it.  The hell with homeopathy!

Angel: But it hasn't yet been a week.  Have faith.  Commit yourself!

In the end, my Internet support group friends have come to my aid. They have been through the dilemmas, the waiting, and the horrible behaviors from children who suffer.  They advise me to give the homeopathic remedy time.  And I will.

Meanwhile, I hear calm voices upstairs. The two kids are playing together and not yet arguing. I've promised to take them rollerblading or skateboarding. It's a cheerful, yellow day that beckons.  I treasure the tranquility I feel now, having the living room to myself. I find my moments.

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