Sunday, February 27, 2011

Our own food experiment!

       Although we were told not to change anything yet, Walt was determined to at least change Jordan’s milk from dairy to soy. I agreed with him that we could try that just to see how Jordan would like the soy milk. We began soy milk on Tuesday. We continued using soy milk in his grits and Carnation Instant Breakfast on Tuesday, Wednesday, and Thursday. Guess what...all three nights he woke up in the middle of the night. On Thursday night, he woke up screaming terribly and could not even talk. It was the same painful cry he would have when he was younger with reflux. A lightbulb went off....could it be soy that Jordan is allergic to? Friday we switched to almond milk. Jordan slept Friday night. He also slept Saturday night as well. (Today is Sunday.) Is that coincidence or could he be allergic to soy and showed that much of a response on two Nexium and a Pulmicort? Time will tell! I am waiting to hear back from the doctor at Chapel Hill to see her opinion.

Allergy Testing

        Jordan went for allergy testing in January 2011.  Although we know he has seasonal allergies and is clearly allergic to some sort of food (by the large number of eosiniphils in his esophagus), Jordan tested completely negative for allergies. The allergist told us  that this was normal for some children with EoE. Lots of children  test negative for food allergies. We were just hoping that something would show up on the would be much easier! We were basically told that the best way to tell what he is allergic to is by doing a food elimination diet. The recommendation of the allergist would be to first try to eliminate all dairy from Jordan’s diet. This means milk, yogurt, whey proteins (his grits, crackers..), and lots of foods that he does actually eat. However, we were asked to wait on the elimination diet until he is taken off the steroids so that we only change one variable at a time. Basically, now it is a waiting game to see what happens once he finally comes off the Pulmicort!

Jordan's skin prick testing

Our Story!

      Jordan was born on March 7th, 2007. We were overjoyed with our 7 pound, 6 ounce handsome little boy! Of course we had all the normal first-time parenting fears about everything. When Jordan was just a few weeks old, we took him to the pediatrician to talk about how much he was spitting up. As is the norm, he gave us some Zantac for Acid Reflux and said the common "he will grow out of it" phrase. We changed formulas a few times, propped up his crib, sat him up after feedings, and did anything we could to prevent him from spitting up so much. I could tell every time Jordan was weighing out of his dosage by the amount of reflux he was experiencing. Jordan hardly ever slept through the night between waking up screaming in pain from reflux or the constant ear infections he began having at 7 months old. As he approached his first birthday, we were so excited to see him meeting each developmental milestone. However, we were very concerned that Jordan had no desire for any sort of table food and the fact that his reflux was not any better. Once again, we heard "he will grow out of it."
Jordan at 4 months old

    The next year of Jordan's life flew by! He grew and grew, despite the fact that he did not want any table  food. In fact, he has always stayed in the 95% for weight and height. He had no problems eating soft foods, especially grits, oatmeal, and Gerber Graduate Toddler Meals. Around 20 months, we became concerned with some articulation/speech questions. Jordan was tested for speech and began receiving speech services. He was soon diagnosed with verbal and oral apraxia ( He has maintained the same wonderful therapist who works with Jordan weekly. She also began working on lots of oral motor activities with Jordan, along with feeding therapy. By the summer of 2009 (around 27 months old), Jordan began to really suffer with his reflux. Up to this point, Jordan was prescribed Zantac, Prilosec, Prevacid, and a sodium bi-carbonate suspension to try for periods of time. None of which seemed to help. He couldn't sleep at night.  He would wake up in the mornings and vomit.  He was gagging and throwing up several times a week and he was refusing to eat almost anything but grits or Gerber Graduate toddler meals. We were finally able to get into a Pediatric Gastroenterology doctor in Charlotte that September. He immediately did Jordan's first scope and found a very inflamed esophagus. Jordan also had numerous ulcers down his esophagus. Jordan was put on a 6 week course of Nexium two times a day. We saw immediate improvements in his symptoms. Unfortunately, as soon as we attempted to wean him off, he began showing signs of terrible reflux again. He has since stayed on Nexium two times a day since September 2009.
Jordan after his first scope in Charlotte
    We were finally able to be seen by a GI doctor in Chapel Hill in the summer of 2010. Jordan was immediately added to the feeding team caseload. He began seeing a speech therapist for feeding therapy at Chapel Hill every other week, in addition to the weekly services he was getting from his therapist here in Rockingham. We soon found out that Jordan had a severe fecal impaction. After completing several in-home clean outs and numerous stomach x-rays, he was put in the hospital at Chapel Hill in October 2010. He was given several gallons of GoLYTELY through an NG-tube. He has since been given 2 caps of Miralax everyday to help with his gastric emptying.

Chapel Hill
Playing trains with Dad
      He was prescribed  Periactin (an appetite stimulant), but to no avail. He was also put on a low dose of an antibiotic three times a day to see if it would help with his gastric emptying. Finally, the GI doctor decided to scope him again afer all of these treatments. He was scoped in December 2010 at Chapel Hill. The results...Eosinophilic Esophagitis (EoE) ( The GI doctor gave us a 6 week course of Pulmicort for Jordan to swallow (to coat his esophagus) two times a day. We were willing to try anything to help Jordan.
     After taking the Pulmicort for just a short period of time, we began noticing some behavioral changes in Jordan. He was becoming more aggressive, agitated, and had really terrible mood swings.  However, we continued with the treatment so that we could attempt to clear up the eosinophils. Jordan was rescoped in January 2011, after his course on the steroids. We received great news...NO eosinophils!
After some Versed

After scope--ready to go! 

     However, we were told to keep him on the steroids until he had food allergy testing. We could decrease his dose by half, but were told to continue giving him one vial of Pulmicort a day. While meeting with his GI doctor and an allergist from Chapel Hill, we talked about how we felt Jordan had been affected by the Pulmicort. The allergist told us that it was possible, but not likely that Jordan’s cortisol could have been affected. We had to go the next morning  to have his cortisol level checked. Guess what...below normal! Now, the Pulmicort had messed up his body’s ability to produce it’s own cortisol. This meant that Jordan had to continue with the lower dose of steroids until his own body began  producing it’s own cortisol. (So basically, 6 weeks of steroids has turned into about 11 weeks...he is still on it today.) We are hoping to wean him off very soon!