Friday, November 18, 2011

Phase Two of "The Goldberg Protocol"

So it was brought to my attention that I never let you know about the follow-up phone call we had with Dr. Goldberg regarding Lily's progress to date.

We've actually had two phone calls with the good doctor and let me tell you, it's a lot to take in.

Here's a quick recap of what's going on:

Lily is continuing to take an anti-viral on a daily basis.

Dr. Goldberg added an anti-fungal to the mix so we're on day two with that.  This was not surprising to me as we've experimented with anti-fungals a few times already.  And of course, we'll know if the medicine is working if we see a lovely die-off period of increased irritability and general grumpiness in the Bird.  Which means fun times ahead around the Rush house.

The newest treatment is IgG injections.

Every time Lily has bloodwork done, there are several things that always seem to stand out - low white cell count and incredibly low IgG levels.  IgG's are one of basically four types of antibodies that are present in our bodies to help fight off various infections.  Of the four antibodies, two of Lily's are low, with IgG being very, very low.

While I've always considered the Bird a pretty healthy kiddo, Dr. Goldberg (since he looks at the whole child, with an emphasis on neuro-immune systems) considers her an ill child.

Not in the sense that she's running a fever, has a stomach bug, sore throat, or things like that.

But in the sense that the low white cell count indicates the presence of a virus and the low IgG means her body is unable to fight off the infection.  He truly believes this has been going on for years (which we've been able to confirm with past bloodwork results) and is the reason for many of her autism "symptoms" - the hand flapping, hyperactivity, loss of speech, etc....

There are other markers in her bloodwork that indicate something physical going on inside our girl.  The hope is that once we heal her body and get her physically "straightened out", we'll see some progress in other areas as well.

Now for the neuro-SPECT, that fancy brain scan we had done while in California that shows images of blood flow in the brain.  Proper blood flow means the brain is operating at its peak.

Most of the kids in Dr. Goldberg's practice have spots on their brains that kind of look like the holes in swiss cheese, indicating blood is not flowing properly to all areas of the brain, meaning portions of the brain are not working they way they should be.

Of course, Lily has never been one to do what everyone else does.

She ain't average, people.

Lily has spots on her brain that indicate too much blood flow, creating little "puddles" of blood on the brain.  Dr. Goldberg referred to them as "hot spots".  These hot spots can result in hyperactive behavior and could possibly even make her head hurt.  Maybe not necessarily headaches, but you know how sometimes you feel like your brain is throbbing and you can almost feel the blood flowing around in your noggin?  Like that.  Which could explain some of the self-inflicted head bopping that is all too common around my house.

Just looking at the neuro-SPECT, Dr. Goldberg's first reaction was to put the Bird on something to relax the blood vessels.

But seeing the neuro-SPECT combined with the bloodwork, he's instead opting to give Lily's body some time to try and heal itself by upping her IgG levels through injection.  If we can get her IgG's up, then maybe those antibodies can fight off the virus and her white cell count will become normal.

So while I don't have a remarkable story of how far Lily Bird has come in the month and a half that we've been doing this, I do feel like we're on the right track and finally getting somewhere.

Lily is five years old and this is really the first time a doctor is looking at her like a "whole person" and not just some specific part - like her heart, her kidneys, her ears....  And while we certainly wouldn't be where we are today without those specialists, it's nice to see someone putting all the little puzzle pieces together in the hopes of creating a whole, healthy child.


  1. I hope this all proves to be hugely successful for Lily! I have never heard of an "anti-viral" - what is it? Because when we are sick the doctor always tells us there are no meds for a virus - it just has to run its course. So I am confused?

    It seems we are on parallel journeys in a way. We are working to heal T as well with his silent seizures and meds which have shown us HUGE gains in language and awareness and now we have an upcoming MRI - which I am terrified about (anesthesia - he has asthma). Those are really interesting results on the neuro-SPECT for Lily. My prayers will be with you for speedy and happy results! :)

  2. Lana, Betty and I have 19 grand and greatgrand children and all have had Quirks.One did'nt talk till almost 4. Just pointed.Turned out the smartest. Another liked to hide things in paper bags.Still found some several years later. One wouldn't potty train, unless you call always going by the same tree in the back yard trained. The list goes on and on.

  3. Overall sounds like a great report! We will continue to pray Lily's body responds well to her treatment. I am glad Dr. G is treating the "whole" person and not just body parts. I am just thrilled God put the good Dr. G in your path! Looking forward to great improvements for Lily!

  4. Thank you for this update! It's encouraging. As a PS - I couldn't help but laugh at Chris Lucky's comments.

  5. Lana,
    I know this has got to be so hard and trying at times, but also very hopeful at times. I pray for many more hopeful versus trying moments in this well as, obviously, healing for Lily Bird.
    I am fascinated with Dr. Goldberg's theories and approach--praying he not only solves the puzzle for Lily, but through her, he's able to help other children as well.
    Thanks for the update.

  6. You guys are awesome. I'm so glad she has you as a mother.

  7. I have to say, all of this stuff with Dr Goldberg fascinates me. I have often wondered about Cam's IgG levels because of his intolerances to so many foods, but am not even sure where to start or who to go too.

    Sounds like you all are on the right track! Prayers for sweet Lily.

  8. Wow.... Really interesting stuff! I'm really thrilled that you have Dr. Goldberg.... The fellow sounds like a true credit to his profession!

    Keeping our fingers crossed here and hoping that you contine to see progress!


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