There and Back Again

Was I missed last week? Did anyone notice?
There was no wandering with me. Wonderwegian was wandering alone. But I’m going to share my journey now.
There and Back Again: An Autism Tale
My oldest son was born in July 1998. He reacted to the Hepatitis B vaccine given in the hospital and he had to be re-hospitalized within 24 hours of bringing him home. He had a low sucking reflex and was always a fussy-up-half-the-night-every-few-hours baby. But he loved to be held. Ear infections were frequent so he was on anti-biotics every few months the first year of life. At about eight months old he contracted the Roseola virus (HHV-6).
He hit all the physical milestones the first year but never slept through the night. He was never a big talker, only said “mama” and “bye-bye” and such sporadically. He’d reach for things, but not point, screaming until I figured out what he wanted.
After he was a year old he self-limited his diet to include mostly crunchy and/or beige-yellow colored foods. By the time he was two years old I was worried. He had dark circles around his eyes and wouldn’t interact with his cousins or kids at church. We were living in an older rental house so I had him tested for lead poisoning and vitamin deficiency since he was such a picky eater: negative for both. The doctor was not worried because he showed love and affection and made eye contact with me. She did prescribe an allergy medication.
During his 3-year check-up the pediatrician saw enough “red flags” to send us to a neurologist and psychologist. After going through various testing in August-September of 2001 he was labeled PDD-NOS. (9/11 for me was an autism attack.) After escaping from reality for a week by immersing myself in the first four books in the Harry Potter series I buckled down and started doing autism research on-line and read a LOT of books.
I changed his diet to the GF/CF diet in October of 2001. He only asked for milk the first day. I told him “Milk is bad for your tummy. It gives you a bad tummy and a bad head.” End of story. The nighttime screaming that had been a part of our lives since the firs year of life stopped. He still woke up every few hours but he wasn’t screaming with what I now know to be gut pain. He stopped dragging his head across the floor or rubbing it on the wall- something he’d done for a year or more.
He started preschool services through our local school system in November 2001. His only language was a few basic words like “cookie”, “home”, “mommy”, and memorized songs. He could not sit in a chair for more than a minute.
I found the NIDS (NeuroImmune Dysfunction Syndrome) yahoo list and website for Dr. Michael Goldberg in December 2001. I followed the stories of other families just starting out and listened to the inspiring stories from “old timers”. Our extended family members have immune related diseases/disorders such as fibromyalgia, arthritis, diabetes, Alzheimer’s, etc, so NIDS seemed logical.
I continued to seek more information and searched and prayed about what else to do for my son. I even went so far as to visit a local chiropractor who did chelation, but when he said he’d never do it on a child because it was too dangerous I moved on to other ideas.
We also went to an allergist who did skin prick testing on him and said since my son didn’t react to milk or mold or pollen he did not need to be on allergy medicine or restricted in his diet at all. I kept his diet GFCF but we dropped the allergy medicine.
After a rough/emotional summer vacation I decided to commit to the NIDS theory and I called to make an appointment in July 2002 (my son just turned four). I also decided to switch from GFCF to the less-restrictive NIDS (low allergy) diet. There was no regression in his behavior/speech/etc.
Our appointment with Dr. Goldberg was in October 2002. We started with an anti-fungal medication. After the die-off (worsening of symptoms) the school workers noticed improvements in focus and trying to communicate more. They were small improvements, but noticeable.
Since that initial medication, we’ve added (and rotated) anti-virals (those HHV-6 numbers from his infant year were sky-high), allergy medication, and SSRIs. Plus we did a round of IMGG for about a year in 2003-2004.
The gains were slow and steady, almost too small to notice at times. And we’ve had rough times/regression when certain medicines didn’t work for him. But within the first few years with Dr. G my son was sitting for school work for up to 20 minutes at a time, speaking in two words phrases, learning to do math, and reading.
My son has been in a regular classroom with a paraprofessional since second grade. He does still receive tutoring with a special education teacher for about an hour a day, adaptive P.E., thirty minutes a week with an OT, and also services with a speech pathologist.
I became pregnant in 2005 and followed Dr. Goldberg’s pregnancy guidelines. When Baby boy #2 was born in November 2005 I opted out of the Hepatitis B vaccine- the hospital didn’t push it when I said my older son reacted to it. We’ve followed the alternate vaccine schedule since. He has only been on medication FOUR times in his life. He’s a happy, healthy chatterbox. He’s never had sleep/night issues and he pointed on schedule for his development. He has creative play and a vivid imagination. He is the BEST therapy for his big brother.
I gave birth to a healthy baby girl last September. She’s met all milestones and just a few months ago had her first ear infection/need for medication. She’s developing above average as well for all milestones.
My oldest is going into fifth grade this year but is still two (or more) years behind academically. His weakest subject is reading comprehension. This past school year he responded better to peer tutors than the teachers/aides and doesn’t like to be shadowed- he’s becoming more independent. He loves interaction but has the expressive language (and social skills) of a two-three year old. He still does a lot of scripting, which interferes with social skills. He’s happy and is able to work at a desk for an hour at a time. MAJOR improvement in attention span over the years!
I haven’t seen any large gains over the past few years though he’s much healthier than he was. This October will mark seven years with Dr. G. Maybe it’s a seven year itch but I want to see if my guy will regress without the medicine or hold his own. His HHV-6 levels are now finally close to normal and his other immune panels have been holding steady for over a year.
The autism world is very polarized like, religion and politics, when it comes to philosophies on the right way to treat it and what causes it. I had to pray over which route to follow when researching autism/PDD/etc so part of me feels like it’d be like turning away from my testimony. I’m not second guessing our journey because I know Dr. G has helped my son and my two healthy younger children are proof to me that Dr. Goldberg’s theory is as close to the truth as possible. We’ve been blessed.
But for now I’ve decided to focus on behavioral and educational boosts. Which will take additional money/time/energy. I can’t do medical and behavioral right now- I’d be stretched too thin: mentally, financially, and physically! I’m in the process of weaning my son off medication, searching for a piano teacher, researching ABA for older kids, plus a dozen other things.
And that is why I didn’t blog last week… I was sorting this all out in my head. I’m ready to travel forward, once again.