GI Doctor Visit

We had a good and informative visit with the GI doc, Dr. Corkins, yesterday.  Two people had said he was a good doctor, one being Maci's Renal Dietician and they were right!  I was really impressed with him....very nice, very good with explaining things, thoroughly and in detail.

One of the reasons why I love Dr. Eison, Dr. Ault (both kidney docs), Dr. Ferguson, Dr. Elabiad, Dr. Goodwin-Samson (Neonatologists in the NICU at LeBonheur) is because they EXPLAINED things.  They didn't act as if something was over my head and I shouldn't be kept in the loop.  If I asked questions they answered without acting like it was a bother.  I miss Dr. Party Rock (Ferguson) and Dr. Joi (Goodwin-Samson)! 

So, we learned that Maci does have reflux but it is secondary to slow motility.  He said it is very common for slow motility to be mistaken or diagnosed as reflux.  So what is slow motility???  Motility is the motion of the intestine.  A motility disorder is anything that causes interruption in the rhythmic waves of peristalsis (contractions) within the gastrointestinal tract. 
Maci has delayed gastric emptying.  She digests things more slowly so when she was on the Similac formula it took her longer to break down the formula; to digest it and move it out.  The Nutramigen formula she is on now already has the proteins broken down so it is able to digest it more easily and it move through her system.  This is why she does better on this formula and also why she has so many poopy diapers (but it's not a bad thing).

Motility disorders are often seen in children with a neurological issue, hypothyroidism, kidney issues and being born premature....ALL of which  describe Moo.  It can effect those with each independent condition so Maci got hit from all sides.  Also learned yesterday, the Nissen was irrelevent for Maci because of her motility issues.  The procedure for a Nissen brings the stomach up over the esophagus to prevent reflux.  Because of the gastric spasms that Maci has, causing her to retch and vomit, it has streched out the Nissen, rendering it useless.  It was also pointless from the beginning because it made her stomach smaller, resulting in her issue with gastric emptying even more difficult because it causes gastric bloat.  Gastric bloat is an increase or production of intestinal gas resulting in pressure and sometimes causing the belly to bulge or distend.  I just thought I had a "gassy baby"!!!  This also explains why she gags on food and vomits it all up....inability to digest it in a reasonable time. 

I neglected to ask the doc how this will effect her eating long term and with eating solids, etc.  The hypothyroidism will hopefully resolve itself post transplant / within the first 2 years of age.  The kidney transplant will prevent the further need for dialysis.  So far, the "signs" of neuro issues are very limited so I hope nothing further develops.  I hope this too can resolve over time or at least be better treated with age.  In pediatrics, medication treatment is so far behind than with adults because WHO wants to test on babies???  Drug companies don't.      
We go back in 60 days so I will ask my questions then. 

What now? 
We are trying a low dose of Erythromycin again.  It was a "bad" antibiotic and is no longer prescribed for infections because it made people sick and gave them diarrhea.  Realizing it increased intestinal motility, it is now prescribed in very low doses for that purpose.  Badabing.  We tried it a month ago for 3 days before diarrhea but Maci's bottom so bad and I stopped it.  She was getting 1.1 mL 3X a day before but this time we are going to try .45 mL 3X a day. 
Next to try would be another drug, Reglan but it has the potential for crazy bad side effects.  It can cause a permanant condition called tardive dyskinesia which is repetitive, involuntary, purposeless movements.  I am hoping that the Erythromycin does the trick.  If not, I don't know that I am open to trying Reglan long term.   
Next option would be slow, continuous feeds to allow for digestion to take place, feeding slowly vs adding more and more formula on top of already undigested formula.
Last option is a J-tube.  Maci has a G-tube that goes directly into her stomach.  A J-tube is surgically implanted in the upper section of the small intestine called the jejunum which is just below the stomach.   The primary reason for use of the J-tube is to bypass the stomach and to be fed directly into the intestinal tract.

I wasn't happy to hear ANOTHER diagnosis but was glad to have some answers.  Now I can stop being frustrated with waiting for Maci to "grow out of" her vomiting issues.

So that's the news from yesterday.  Cross fingers, eyes, legs, arms, ears, eyes that the Erythromycin works and without causing my poor baby to have a horrible diaper rash or blisters.  It will take 2 weeks before we know if the med is working.