Something Is Wrong

It was clear this child could not and eat and when she ate a little, it was very, very little.  And then she could not keep it down.

The pediatrician's office would not let me past the front office.  No appointment for us! It was just the flu.  I persisted that a child does not get the stomach flu every day for months.  Finally an appointment.  She was diagnosed with GERD and given some medication.

After a few weeks, it wasn't better.  They said they just needed to change her to Prevacid.  It did make it a LITTLE (emphasis on the word little) better. After one year, she had no growth.  None. Not in height, not in weight.  They gave me an appointment for September.  11 months after she arrived home.

A lot of testing began.  All came out good.  At least that is how it was always presented.  Good news, Kim.  The test did not pick up any abnormality.  She was referred to a Gastrologist.  I was certain they would figure it out. 

And they tried.  But several tests later, there was nothing but good news - We did not find anything.  At this point, I couldn't figure out if that was good news.  I did not want anything to be wrong but something was and no one could figure it out.  Endocrinologist did tests and started growth hormone.  Genetic testing, food therapy, countless tests, follow ups and referrals to more specialists.  Failure to Thrive, Short Stature, Dysphagia, and GERD were her diagnosis.  Many medications but no answers.  The symptoms continued.

She was teased when she started school because the six year old in Kindergarten was the size of a two year old.  The worries about how she would navigate mounted.  The pressure from school who protested  every time she left for her medical   appointments mounted.

My search continued.  I took her a holistic doctor. I stood in the health food stores countless times looking for the answer.   If someone had told me stand on my head, spin around and chant, I would have.  I was frustrated.  Imagine how QiuLu felt. 

She became afraid to go to public places because she would get no warning when she would get sick.   More than once, people stared, commented how a mother could take her sick child out in I worried about the emotional toll this was taking on her.

When one doctor became frustrated, we would get referred back to Gastrology or another Specialist.  One referral was to feeding therapy because I was told this could be in her head.

Really???  They didn't see the retching.  It felt like we were on our own.