A mother's story: My quest to help my son, Lucas

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A mother's story: My quest to help my son, Lucas

My autism story is, in many ways, similar to those of other parents

who were thrust on a strange journey with no map and one hoped-for

destination: normal.

What is different, perhaps, is that in my case I found help early and

am now on the road to recovery.

I first realized something was wrong with Lucas when he was 17 months

old. While all his peers were pointing, clapping, waving and

babbling, Lucas was simply staring into space or repeatedly opening

and closing doors.

He fussed often, cried a lot and made very little eye contact. It

didn't happen suddenly but was rather a gradual progression that had

escaped my notice until one cold January day. He was home sick, I was

alone with him and decided to check his progress against a list of

developmental milestones he should have reached by that age.

My heart sank as I realized he failed every social and language

checkpoint on the list.

I shared the results with my husband that night, who told me not to

worry. Boys are slow learners, he said. Lucas is fine. But we took

him to the pediatrician just to be safe.

The doctor was less than encouraging. He agreed our son was " off " and

referred us to an ear specialist to see if the problems stemmed from

hearing loss.

The specialist found fluid in Lucas's ear and installed tubes. We

felt sure things would improve after the procedure, but they did not.

So, we went to the Regional Rehabilitation Center, where Lucas was

evaluated by a team of experts for two hours. They confirmed he had

several developmental delays and attributed it to Sensory Processing

Disorder. This was my first clue Lucas maybe had autism. Although not

all kids with SPD have autism, all kids with autism have some form of

SPD.

After the evaluation, we began twice-a-week speech and occupational

therapy for Lucas. And I began my quest for information about autism.

I scoured the Internet and the bookstores, hoping to prove to myself

that Lucas didn't have this horrible condition.

But every site I visited and every book I read only convinced me more

that Lucas was indeed autistic. He matched the profile perfectly.

Luckily, though, my research also provided me hope in the form of a

concrete actions I could take to lessen the damage. Action No. 1 was

removing wheat and dairy from my son's diet. According to the

research, kids with autism have leaky guts from gastrointestinal

issues. When the proteins in wheat and dairy - called gluten and

casein - pass through the leaky gut and into the blood stream, they

travel to the brain and attach themselves to opiate receptors. In

essence, they get kids high.

Although skeptical of the information, I tried removing the foods

nonetheless. I was willing to try anything. And to my amazement, it

worked. Lucas stopped fussing and crying. He made more eye contact

and started playing with his toys. All of this happened within one

day of removing dairy and wheat.

We did this March 30. I'm pretty sure it was the first day since

January that I smiled.

Our next step was finding Lucas a doctor - someone who wouldn't

dismiss our success with the diet as bogus or laugh off emerging

science about autism as quack medicine.

Thanks to Regional Rehab Center Director Kay Mathews, and Shona

Jordan, who is the mother of two special-needs kids, my husband and I

found Dr. Goldberg. He is a pediatrician in Los Angeles who

stumbled into the autism field when his wife became ill with Chronic

Fatigue Syndrome years ago. Goldberg realized his wife's blood work

was similar to those of his patients with autism, and he realized all

of it's related to the immune system.

In his opinion, most kids being diagnosed with autism today don't

have autism at all. They actually have an autoimmune disease that

affects the way the brain functions. He calls it Neuro Immune

Dysfunction Syndromes - NIDS. And he says it's treatable.

We took Lucas to see Goldberg in June and have since learned through

blood work that our son indeed has a weak immune system. The doctor

prescribed two medicines: Valtrex for a virus that was active in

Lucas's brain, and Nizoral to combat an overgrowth of yeast in his

gut that was compromising his immune system.

Lucas, who turned 2 last month, has responded well to both drugs.

Since we started the treatment, we have seen the following milestones:

- He has begun to use a few words, such as apple, up and outside.

- He sometimes imitates us, which he had never done before.

- He can sit still for circle time at day care.

- He plays with other children.

- He understands what is said to him and can follow simple commands.

- He can even count to 10 (though he skips the number seven).

These might seem like simple tasks for most kids at this age, but for

Lucas they are miracles. Of course, we still have a long road ahead

of us and don't know if our son will ever be " normal. " But we feel

more hopeful now than we did just a few months ago.

Whereas my biggest fear before was that my son would turn out like

Rain Man, my biggest fear now is that he'll need special education

classes throughout his academic career and might always have to fight

harder in life than his peers.

I hope I'm not jinxing myself by writing this column so early in my

journey through this strange terrain and when so much could still

change - for better or for worse. But with one in 150 kids now being

diagnosed with " autism, " I think we need to talk about this as openly

and as often as possible.

Maybe then we can focus more attention on this medical mystery and

get our kids the help they need to recover.

Contact Le Coz at or emily.lecoz@....

Appeared originally in the Northeast Mississippi Daily Journal,

9/28/2008, section A , page 1