Endocrine visit in June 2009

I called the Endocrine clinic at the Children's Hospital of Wisconsin today.  To my surprise, I was able to talk to a nurse and she was very helpful in offering me information on what they did for Allie back on June 8, 2009.  This was one of our first appointments with a specialist and honestly I couldn't remember exactly what they did for Allie.  I basically only remember meeting them once and them telling us everything was fine from their standpoint and they were referring us over the feeding clinic.

Anyway, my gut feeling was right - they basically did nothing for Allie.  In talking with the nurse this morning, she said that the Endocrine clinic did no blood work however they did review blood work that was recently drawn by her Pediatrician.  This is what the blood work included:

Thyroid
Chemical profile
Electrolytes
CBC

The reason these labs were drawn by her Pediatrician, is because Allie had such a high fever she was almost unresponsive.  We spent all day in the doctors office trying to figure out what was wrong.

The nurse I talked to today said that the Endocrine clinic didn't diagnose Allie as SGA (small for gestational age), however the following doctors, GI, Psychologist, Dietician, Genetics and Neurologist, all specialist that Allie was seeing, had all declared her SGA in their records.  Doesn't make sense - Endocrine doesn't diagnose her with this - the one specialist that specialises in this?????  Yet, while on the phone with the nurse, I gave her Allie's birth weight and height and she said, "yes, according to our charts, Allie was SGA".  The whole conversation was a bit strange.

The nurse told me that since Allie was SGA, the doctors usually give children till the age of 3 years to catch up height wise.  She said that if they don't catch up by the age of 3, they probably won't catch up.  Well, Allie is over 3 and still not registering on the growth chart for her height.  The nurse recommended we get Allie into an Endocrinologist right away to be evaluated.   We are one step ahead of her because Allie already has an appointment scheduled for the end of August at the Marshfield Clinic.

I'm glad I talked to the Children's Hospital Endocrine Clinic today because it just confirmed that they did absolutely nothing for Allie when we seen them 2 years ago.  Actually, they didn't even diagnose her correctly.  If you are not familiar with SGA, check out this website: http://www.magicfoundation.org/www/docs/113.1518/small_gestational_age.html
It gives a lot of great information.

Allie is continuing to do well and she is a very happy girl now that she is back on her tube feedings.  For lunch today, Allie wanted me to feed her chocolate milk through her tube - so I did.  Allie was so excited.  Yesterday when I was making her blends, she asked if we could put a cookie in her blend - she loved that!  She's quite the character that is for sure!

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