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.