Alex's Story

***This post is intended for anyone who wants more information on Alex's GI history and for anyone who may be having similar struggles with their child. Feel free to ignore it, or contact me if you have any questions.***

Though I had a relatively eventless pregnancy, my labor was full of excitement and Alexander was born via emergency c-section. By the second day he was doing well with nursing, but wanted to feed very often.  Additionally, he was deemed "inconsolable" in the hospital nursery and they would only have him there for his daily checkup.  

After 4 days, we were able to go home.  While home, Alexander never slept.  Now people say that a lot about newborns, but he literally never slept.  You could get 20-40 minutes (max) if you held him - which had to be done constantly.  Whenever he was put down he would scream - not that sweet little baby cry, but what you'd expect to hear from a toddler who's just fallen head first into the pavement.  There were many days when he would cry no matter what I tried.  There was one day that he cried for over 20 hours.  Additionally, whenever he ate, he'd projectile vomit everything back up.  So it was this constant cycle of screaming, feeding, vomitting, and screaming again.

At a week old, Alex was diagnosed with Acid Reflux and started on Tagamet.  Instead of throwing up every feeding, he'd only vomit a few times a day.  After a few months, he was switched to a different formula (Enfamil AR) because it was thicker and would coat his stomach better.  With that switch he only threw up one to two times a day. [Due to Alex's reflux and mismanagement of my health at the hospital, Alex was unable to nurse for more than a few days.  Yes, this was devastating to me.]

Throughout this time, as well, Alex continued to struggle with sleep.  Laying down aggravated his reflux terribly, and he would constantly "comfort feed" to settle his stomach.  Additionally, Alex had a slew of lower GI issues simultaneously.  It took many weeks to get the right balance of powdered formula and ready-made formula.  Too much powder would constipate him and too much ready-made would give him diarrhea.  He also consistently had low-grade temps. 

Things seemed to regulate themselves between 3 and 6 months.  From 6 to 9 months things were great!  At 9 months, however, everything tanked and we're still digging ourselves out of this mess.  Just before Christmas, he developed a rash on his face and his reflux went out of control.  By the beginning of January, he started losing weight from constant diarrhea.  By the second week of January he was in terrible pain and had become listless. He was switched to Prevacid which helped control his reflux. After a few days, his doctor took him off of milk and switched to soy - immediate turn around!  We thought, "Problems solved."

Not quite.  Since then it has been this rollercoaster of lower GI issues (with sporadic reflux) that never seems to end.  He has had bouts of spitting up blood and some blood in his diaper. It was suspected that the spitting up was caused by the acid reflux burning the tissue in his esophagus.  It was also suspected that he had developed colitis from the aggravation to his lower GI tract causing the blood in the diaper. 

By March he was taken off of all wheat products and referred to a Pediatric Gastroenterologist. Because it is such a busy practice, it took until the end of June to get in to see him.  While we waited, Alex was allergy tested for all the major allergens (we thought for SURE the milk allergy would come back positive.)  Nada.  No allergies.  When he saw the specialist, he was referred for an upper GI and an endoscopy with biopsy.  He had to be awake for the upper GI and it was absolute torture for all involved.  The endoscopy was concerning because he was under general anesthesia.  His procedures went well, and other than the upper GI confirming horrible reflux, no results.

At the time, his lower GI tract seemed to calm down for no known reason, so everyone thought it had just resolved itself.  He was put back on wheat and was even able to tolerate milk cooked in food (like, banana bread, etc.)  In late July, we received word from our insurance company that they were not going to cover his Prevacid anymore and we had to switch to a generic (Prilosec).  After 5 days, Alex was taken off of the generic due to a nasty reaction (diarrhea, headaches, photosensitivity).  We decided to try him off of meds, and while his reflux has been manageable with diet modification, his lower GI system has yet to regulate itself again. He is now off of all milk products again, and no one can seem to come up with any "good leads" as to what is going on.