and well beyond exhaustion.
"It was so much harder than it had been with my two older kids.
Nothing would make Charlie happy. I just felt, this is really, really
difficult," says Mary Jo who lives in the Chicago area with husband
Chris. "After a series of long days and nights of crying, I finally
called the pediatrician. He said, 'I've never told a mom this before,
but I think you should stop breastfeeding.'"
So she did. She switched Charlie to the formula
the doctor instructed, which helped the colic. His temperament
improved and he seemed a bit happier. But as the days slipped into
weeks, Mary Jo noticed that Charlie wasn't gaining weight and didn't
seem to be growing the way her other babies did. She mentioned it to
the doctor at a routine baby check up.
"The doctor kind of looked at me and said that
Charlie may just be a small child. He suggested that my expectations
may be too high," Mary Jo remembers. "Intuitively, I felt there was
something wrong, that this wasn't where Charlie was supposed to be."
At 8 months and well below average on the
growth chart, Charlie underwent an absorption test to check it out.
After a false start, results came back normal. The gastroenterologist
told her to add extra fat to the little boy's diet. By now, Charlie
was eating some table food, including bread and pretzels. Mary Jo
mixed a tablespoon of melted butter into his food at each meal. After
a month or so, his weight began to creep up. The doctor pronounced the
baby cured, advising Mary Jo to continue adding fat to his diet.
As the months passed, Charlie's energy flagged
and his disposition worsened. He cried whenever Mary Jo left him with
a babysitter and didn't calm down until she returned. He developed
constipation. He was lethargic, cranky and clingy, insisting that Mary
Jo hold him.
"He couldn't stand for me to put him down. He
wanted to be in my arms all the time or sit in my lap and watch Barney
videos," she recalls. "A toddler normally has boundless energy, but I
remember taking him to an indoor playground, a toddler paradise, and
he didn't even want to get out of the stroller."
One day, Mary Jo was grocery shopping, standing
at the bread counter with Charlie in the cart. Unexpectedly, he threw
up.
"He hadn't been sick," says Mary Jo. "Usually
you can tell when something like that is coming, but there was no
warning."
A week later, Charlie vomited again –
and then again, for the next five weeks. Mary Jo took him to the
pediatrician who ran a series of tests. Charlie hadn't gained any
weight since July –
and this was October. Mary Jo was increasingly concerned, but with the
tests coming back normal, the doctor was reassuring.
"He said that sometimes kids plateau. And not
to worry about the vomiting, as long as he was a good eater, which he
was," she says.
As the weeks went by, Charlie would have
wailing episodes, sometimes lasting an hour or so, as if his stomach
ached. At one point, he was in such distress that his parents rushed
him to the emergency room. The crying stopped by the time the boy saw
a doctor, who said it was probably "gas."
At Thanksgiving, as Charlie, now almost 2, was
fussing and clinging to Mary Jo, the worried parents shared their
concerns with Chris' cousin, a psychiatrist.
"We told her, 'We don't know what else to do;
the doctors keep saying that he's fine,'" says Mary Jo. "She told us,
'Charlie is not fine. He needs to see a neurologist and a
gastroenterologist –
right away!'"
A flurry of phone calls followed with
appointments scheduled, including an MRI to assess for a brain tumor,
a possible neurological reason behind Charlie's vomiting. As
specialists at Children's Memorial Hospital in Chicago conducted
aggressive diagnostic procedures, the gastroenterologist handed Mary
Jo some antacid for Charlie's vomiting and mentioned she had run a
test for celiac disease. Results would be back in a day or two.