Cooper's update

byline: with A LOT of words.

Everything came back normal.

Now for the details that will be probably more of a dialog with myself but certainly a record of events.

January 2012: at Cooper's 6 month appointment I expressed concern over three reactions he had with rice flour.  #1: Christmas night = ER visit, #2: after minimal rice cereal at home with me, #3 ONE rice puff with Ms. Patti.  Susan our nurse practitioner/pediatrician referred us to a pediatric gastroenterologist, Dr. Stevens.

February 2012: Cooper and I meet with Dr. Stevens and he did a thorough intake and ordered an Upper GI, blood work and urine testing.  In a follow up letter he wrote the following to Susan:
7 month old with projectile vomiting and looser stools associated with rice cereal.  He also does not eat a lot of solids in general.  Will examine anatomy by UGI to rule out antral web.  Will do labs for IgE mediated issues. FPIES (food protein induced enterocolitis syndrome) is also in the differential.  There is no reliable test for this however.  Will screen for celiac disease.  Consider a metabolic work up if no etiology found.  As for solid foods for now, attempt only in earlier parts of the day and give slowly any new foods.  Separate all new foods by at least 5 days.

• Upper GI
• Comprehensive metabolic panel
• CBC (includes DIFF/PLT)
• Sed Rate by modified westergren
• C-Reactive protein
• Food allergy profile
• Celiac disease comprehensive panel

March 2012: Cooper, Hottie and I went to St Mary's Children's hospital for the above tests.  It was recommended to go there since it is a children's hospital.  Upper GI went fine, we were surprised that he actually drank that chalky stuff.  Bloodwork...20  cc's later (that's FIVE vials people) and a return trip later that afternoon (yes after we had been "released") because they forgot to get a urine sample we were done.

March 2012: Over the next few weeks the results came back.  The only concern was his urine organic acid analysis revealed a large elevation of Adipate.  Because this was not in his realm of specialty Dr. Stevens referred us to a metabolic/genetic specialist.

Insert spring breaks, torn rotator cuff, baseball practices, baseball games, baseball pictures, packed work days, Parker sickness & death, 1st grade fundraisers, bible study, Good Friday, Easter, teething, Ryland's speech evaluation, honor roll assembly...

April 2012: At Cooper's 9 month visit Susan asked about the above visits, tests, and results.  She requested the lab work from Dr.Stephen's and supported the recommendation to see the metabolic/genetic specialist.

May 2012: At the first available appointment, Hottie, Cooper and I traveled to Joe DiMaggio Children's Hospital in Hollywood.  With lab results, most recent healthy kid visit, and infant PKU results in hand we met with Dr. Yusupov.  I was impressed with his bed side manner and relaxed demeanor.  Susan had warned us that the waiting room may have some very sick children in it, that the he was going to thoroughly examine Cooper (including measuring the distance between his eyes and distance from his nose to his ears) and that the visit could take several hours.

Here are some of the notes I took during the visit:
Urine organic acid (UOA) analysis is one of several tests that determine genetic disorders including metabolism issues.  If his body can't process the proteins/enzymes/etc than an accumulation can build up and eventually cause developmental delays, strength issues, and/or skin changes.  Most infant PKU's (his was normal) diagnosis the most common disorders.  He questioned Lab Corp (who St Mary used) procedures and blood work minimums. Abnormal UOA can indicate Metacondra (latic acid build up in the muscles that causes significant issues in energy).  

Overall he felt that none of the above were issues for Cooper but that a "Pandora's box had been opened" and that he would have to follow up on the test results.  So he ordered more blood work and another urine sample.

We left the office and walked across the street to the Children's hospital where the took the blood from pricking his finger!  She had to squeeze it a lot to get enough out but it certainly was better than taking 20 cc's from his arm! 

We even remembered to the put the urine sample thingy on (around 12:30) when we first got there in the hopes that we would catch a sample.  And then we waited.  We tried to get him drink his bottle.  And we waited.  I dropped water in his mouth by a straw. And we waited.  We stood next to the sink with running water.  (It made me have to pee.)  And we waited.  We let him play in the sink water.  And we waited.  We went to get something to eat.  And we waited.  We took him outside.  And we waited.  We took his diaper off.  And we waited.  We asked for a cup of warm water to splash on his feet and let his hands play in.  And we waited.  At 4:00 we went back to the lab (because it would be closing at 4:30) to find out what our options were, only to find out the lab was closing at 4:00 that day!  And as we stood there talking to the lab tech...HE PEED!  Between the ear infections and bloodwork I think his little body was exhausted and dehydrated and unlike an older kid you can't make a baby drink! 

Within the week his results came back and everything was "normal".  There were some mild abnormalities (elevated acids, but not the original Adipate elevation, and ib profen- thank you double ear infection).  Dr. Yusupov told us he would only be hearing from us if other episodes (dehydration/excessive vomiting) occurred, or if we saw a change in his mental status.