Friday, June 29, 2012

How I came to Biomedical Intervention for Autism, part 1

So, I didn't start any biomedical therapies with either of my boys until Kieran was 6 and Cameron was 4. I had flirted with vitamin supplements, but I had no real idea what dosages to use. So, I never really gave the boys what they needed in order to get the ball rolling with biomed. I didn't believe that vaccines hurt my boys, because the stories of each of my boys' first years of life was so different in big ways compared to that narrative we've all heard and read about.

Like a lot of Moms, I had heard a lot about autism and vaccines between 2001-2005, and I had read Facing Autism and Overcoming Autism. These books were well written and interesting, but they didn't describe our experience with autism at all.

Some parents describe kids that were talking, pointing--totally socially normal, and then-BAM-right after their 15 month checkup and shots, they were gone. That was never my experience with either of my boys.

Kiki never really experienced any real regression. He was the happiest, most content baby I had ever seen. He slept like a champ. (6-8 hours at night and several 2+ hour naps during the day). He seemed to develop normally until about 6 to 8 months and then his development stalled out.

As I look back at his first year, there were classic warning signs. But, the description of these children did not fit Kiki at all. He just never started talking, or pointing or interacting with his world in that wonderfully messy, active way that babies do when they reach about 9 months of age.
Kieran at 10 months-he was in the middle
of fighting a reoccurring ear infection that
he had for two months. You can really see his puffy eyes :(

However, he did have his own health issues.

Right after Christmas of 2003, sometime after his 4 month checkup (but not immediately after--like two weeks after), Kiki caught RSV. This sent him, and us, on a spiral of asthma and nebulizer treatments and round-the-clock worry that lasted until he was almost 2 years old.

To say that Kiki was a sickly baby, from that point on, is more than fair. He caught every cold you can imagine. He would wheeze and gasp for breath during the first few days of each cold virus that would come his way. And they seemed to come weekly. Just as one viral infection would wane, another wave of fever and snot would come again. I became exquisitely sensitive to signs of new infections, the onset of new symptoms--this was the only way I could tell when one cold stopped and a new virus was beginning.

The first round of RSV lasted about three weeks. While he was never hospitalized, it was frightening for me. There he was, my tiny, four month old baby boy, fighting for air, his ribs clearly showing with each inhale, as he fought to suck in enough oxygen to sustain himself. He was hungry, but could not catch his breath to properly nurse, so he didn't nurse for several days. I ended up taking an oral medicine syringe, pumping my milk into a little cup and giving him half a teaspoon of milk every two minutes for hours at a time. In addition to not being able to catch his breath, he started vomiting the day after we started nebulizer treatments--one more worry for me.

During those first few months, I read every book I could get my hands on about childhood asthma, the causes, the triggers...everything. I was on  a first name basis with all of the phone nurses at our pediatrician's office.  I would call to check in and pick their brain on what signs to be on the lookout for---signs of recovery, but--more importantly--signs that we needed to head to the ER. I was often praised by the staff there that they wished all their parents of asthma-babies were as driven as I was to take control of their baby's medical care. Keeping his asthma under control, and Kiki out of the hospital, was my number one priority.

We never had to go the ER for Kiki's asthma. I was very proactive and aggressive with his treatment. Albuterol, inhaled cortical-steroids, and even oral steroids--Kiki was on all of them from about 5 months of age, onward. I trusted the medical professionals that they knew what they were doing on that score. In retrospect, though, I can see that his immune system was under siege. I didn't understand what could be the cause at the time, or that there was anything I could do about it.
Kiki with his Paw Paw at 12 months. His head looks bigger,
he seems more alert.  But he also still looks sick to me.

When Kieran was 7 months old, I noticed one morning that he had a bulging fontanelle.  That morning, he was normally behaved,  not running a fever, nor did he have any other symptoms that caused worry. But I did call the doctor and she said to go ahead and bring him in.

After she examined him, she agreed that, yes, Kiki's fontanelle was definitely bulging. But she couldn't really see any reason why. In an abundance of caution, she scheduled him to have a CT scan the following week. No, she didn't come across this often with a healthy child, a child without some form of encephalitis, so I think that's why she was wanting to check it out "just to be sure" that there wasn't anything going on.

In retrospect, Kiki had just had his 6 month series of shots 10 days before. Because he had been so sick that January, February and March, he was a month behind in his shot schedule. Like a good mom, I had given him his full series of shots that visit, which was 4 needle sticks, 7 different vaccines

Now, I don't know for certain that this could have caused swelling in his brain. The CT scan showed that he was fine, that there was nothing abnormal about the structure of his brain. But would it have caught slight swelling? Or more specifically, swelling in specific areas of the brain, not necessarily the whole brain? Was the radiologist only really looking for something "significant" and what would something "significant" look like? A tumor or abscess only?

I don't really know the answers to these questions, because my son was completely, neurologically "normal" at this time. No one was thinking about autism. While he was, and has always been, a very visual learner, he didn't seem "unusual" in this regard. He was only 7 months old. Sure his head was large, above the 95%. But again, not abnormally so.

Only now, as I go back and recount Kiki's health history, does any of this seem possibly relevant--little data points that may, or may not, link with other families stories about their child's first year of life. No one has ever asked me questions about this time in my life. These are things that I have remembered and pieced together, well after the fact. Who really knows if they are relevant. I believe they are, but I can't prove it.

But I digress with my story...

When we moved away from Illinois to Pennsylvania, just before Kiki turned 2, his asthma cleared up almost overnight. He would still get sick more frequently than I would have liked to see--maybe 7-9 viral colds a winter. But never with wheezing again.

Which was a relief, because by that time, autism was on my mental radar screen. Kiki was 18 months with no language at all.  But he did have repetitive motions, running in circles and an insanely long attention span to preferred toys and books. What seemed cute and interesting at 16 months of age, had rapidly become strange and worrisome at 18 to 20 months of age. Reading scores of books on asthma had given way to reading scores of books and articles about autism.

Not long after we moved to PA, just after Kieran celebrated his 2nd birthday, Cameron was born...and during Cam's first year of life, a whole new set issues cropped up--this time for Cameron. There was a pattern emerging, but I wouldn't see it clearly for several more years yet.

More next time...

1 comment:

Lana said...

Gem,
This is so interesting to read! I never did ask- but I won't lie, I've always wondered what the early days of Kik and Cam were like for you. Thank you for posting this. It's so brave of you. Thank your for sharing.

Love you. Xoxo