Wednesday, June 19, 2013

Pick an Answer, Any Answer

As I was growing up, I considered tons of career options.  Teacher, social worker, counselor, accountant, business owner....the list seemed endless.

Unless it was in the medical field.

If it included blood, needles, or sickness, it was not an option.

My mom is a nurse and managed an entire emergency room.  My aunt (her sister) is a nurse and works daily in surgery.  I have several cousins who are nurses.  I have yet to figure out how that gene skipped over me, but it not only skipped, it hurdled itself way out of the realm of possibility.

It's not that I faint instantly at the sight of blood, or that I spontaneously combust if someone pukes in my presence, but I do feel woozy, question my stability, and basically avoid anything gross or remotely medical.

Couple that with the fact that I can diagnose anyone as a terminal case after only 20 minutes on Google, and it is just better when my children do not have medical issues.

Unfortunately, my little guy has a medical issue.

One that does not go away.

At least until he hits puberty....or so the latest research tends to suggest.

This medical issue -- PANDAS -- is one that I have come to dislike very much.

I understand that I need to be thankful (and I am) that he doesn't have cancer and chemo treatments, diseases which require transfusions, or conditions which bring about lengthy hospital stays.  I really am grateful for that.

But considering my issues with all things medical, this diagnosis is one that has caused me to question every parenting move I make....and every doctor I visit.

The short story is this: Strep makes something go haywire in my little guy's body.  He is asymptomatic, so we don't know when he gets it.  When this happens, his crazy antibodies attack his brain instead of attacking the bacteria. When his brain is attacked, he demonstrates an interesting array of symptoms - various tics, emotions, and behavior.

This is constantly making me second guess what the cause of his behavior is and whether or not it is something he can control.  I find myself having a whole lot more patience and understanding if antibodies are laying siege on his brain than if he is just acting like a goofball and making idiotic choices.

Unfortunately, there is no way to know. Ever.

Unless we would have weekly MRI's - that would potentially give us a bit of a hint.

Uhhh.....No thank you.

Oh sure, there are lab tests to measure the antibody level in his blood. We have done these several times. However, even the doctors disagree about the validity of these results.  Doctor #1 wants lab work done every 3 months, and additional times when new "strange" behaviors occur.  He feels that the antibodies should fluctuate in correlation to behavior.  Doctor #2 says that research is showing that the antibodies measured by these blood tests are not the actual antibodies that are attacking the brain. 

Great.  So which ones are the ones on the warpath?

Of course, antibodies you can't measure.

Seriously, how does anyone really know?

What caused this little medical rampage is this:  We have noticed a progression of new obsessive/compulsive and tic behaviors that have made us feel that he is once again cycling up (If you Google PANDAS - and I really don't recommend it - you would see the term 'cycle' quite often.). 

I called Doctor #1 and Doctor #2.  I left messages about what we were seeing.  Doctor #1 called right back and requested lab work.  Doctor #2 has yet to call back. We did the labs.  The goal is to be below 250-300ish.  He has consistently run right around 500.....for one year and 3 months.

The result this time: 250. Doctor #1 said because the lab is normal, that the behaviors aren't PANDAS related.

We should be doing the happy dance.

Oh wait. We still have very strange behaviors....which are NOT getting better.  And if they are not PANDAS related....why is he doing these things?

Which makes me think Doctor #2 may be right.

Which makes me want to scream.

Actually, I don't care who is right, I just need some answers.

Yesterday would be good.

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