An Attempt to Explain it All

Now that we're back home from California, I feel like my head is spinning.  There's lots of information circulating around in there and I just keep trying to latch onto a piece and figure out what to do with it.

And you know how the doctor will ask you a dozen times, "Do you have any questions at all?" and you say, "Nope.  Got it all here in my head and on my notepad".

And then you get home.  And can't remember a thing he said and your notes look like they're written in a foreign language.

That's kind of where I'm at right now.

I've already had three phone conversations with Dr. Goldberg's staff and am gearing up for another little chat today.  I feel certain these sweet and very patient ladies will be added to my Christmas card list before this is all over.

First things first - here is my very, very, very basic explanation of what Dr. Goldberg thinks is going on with Lily Bird:

Once Lily got past her first year of medical adventures (pyloric stenosis repair, open heart surgery, GERD, low platelets and kidney reflux), it seemed like things were settling down and she was overall a healthy baby.

But these unexplained viruses would pop up occasionally, just like most of you have experienced with your own kiddos.  Those kind that are never treated with meds, just allowed to run their course.

Once we started down the autism path, we had bloodwork done on the Bird on a fairly regular basis, it seemed.  The nutritionist wanted some, the allergist wanted some, her platelet count needed to be checked and on it went.

It seemed like anytime the Bird had any blood drawn, the doctors would always tell us it appeared she was fighting a virus but it was no big deal - these things resolve on their own, blah, blah, blah....  Coupled with the fact that she was experiencing absolutely no symptoms of being ill, we never thought about needing to pursue it.

Fast forward to California - Dr. Goldberg immediately points this out to us, citing about eight or nine times in Lily's medical history that this virus (or viruses) showed up.

Basically, he believes that Lily has a virus that has settled in the frontal lobe of her brain.  And by feeding Lily things like whole grains, dairy, chocolate, and sugar, I've been unintentionally feeding the virus right alongside my baby girl.

Now, before you get worried about me, I don't feel guilty about this.  Dr. Goldberg was actually quite complimentary of the interventions that Ryan and I have pursued for the Bird up to this point.  He reassured us that there was really no way we could've known to pursue the virus issue when even Lily's medical doctors and specialists weren't.

But I do have to tell you that I'm thinking of that virus in terms of that nasty, disgusting toenail fungus commercial on TV.  You know the one I'm talking about, right?  Click here if you don't and make sure you're not eating anything.  

Gross, right?

Well, I keep thinking that "brain virus" must be like that toenail fungus and I will do whatever it takes to remove that disgusting mass from my daughter's brain, you can rest assured.

So Lily is now taking an anti-viral three times a day.  We started it last Wednesday at the half dosage recommended for the first week.  Then this Wednesday, we'll bump it up to the full dosage.

Today, we'll begin the diet recommended by Dr. Goldberg.  It's quite interesting (or at least I think so) so I'll post about it later.

The anti-viral combined with the diet should take care of any of Lily's symptoms attributed to a virus on the brain.

There are other steps to follow, most of which I don't know about at this point.  I do know that if attacking this as a virus doesn't give us the results we're hoping for, there are other things Dr. Goldberg will do.  It's not like if it's not viral, he'll be stumped and send us on our merry way.

Plus, he took a boatload of blood so I'm betting something will show up in there that will give him even more information.

One other good thing - because of Lily's colorful medical history, Dr. Goldberg mentioned several times how much he'd really like to get a Neuro-SPECT (a very detailed picture of blood flow in the brain - think MRI times 1000) of Lily.  Evidently, not every child he sees has this procedure.  So I told him that we were in California for the week and if he wanted a SPECT, we were on board for it.  He got pretty excited and we were able to get that taken care of as well.

Sometimes, it pays to have a child like the Bird with an awesome medical history.  Every now and then, a doctor takes a special interest in your kid for "research" purposes.  Which means that your child maybe gets studied a bit more, gets looked at a bit more frequently, and is remembered by the doctor.  To which I say, "Research away, buddy!  Write papers about my kid.  Give lectures about my kid.  Do whatever it takes to make my kid your success story!"  What parent wouldn't do that?

Lastly, we do not have to travel to California on any kind of regular basis.  There is a set protocol for follow-up.  I have a form that I fill out weekly and fax or email to Dr. Goldberg.  Once a month, I speak with the office staff.  (or right now, once a day is more likely!)  And every two months, I have a phone appointment with the doc himself.  He sends me paperwork for any requested testing and I can have it done here in Austin to be sent to him.  It's all very regimented and meds are withheld if parents don't hold up  their end of the bargain.

I think that's enough information for today, what do you think?  I'll be back tomorrow and will fill you in on the diet stuff.  Plus, it wasn't all medical, all the time so I have some fun pictures from California to share with you, too.

Have a great Monday!