livingwithevan.com | A Mystery Solved

A Mystery Solved

Posted on March 21, 2013 by William 7 Comments

If you have been following along with Evan’s journey then you should know that, in addition to everything else, Evan has been battling GERD and puking his entire life. His puking has gotten so bad that we’re concerned about his teeth, which, at only 20 months old are browned from all of the acid that’s in his mouth. You try brushing the teeth of a child who doesn’t want anything in their mouth let alone a toothbrush. Thankfully what we thought was decay is only surface staining. We will be going for cleanings every 3 months to clean this up and prevent any future problems. We’re not certain but these cleanings may have to take place at Bronson under anesthesia.

After at least two upper GI’s, a couple small bowel follow through’s, and a couple reflux studies both at Bronson and at U of M over the last 15 months we were at no better understanding of his puking. Evan has some reflux but his anatomy looks perfectly normal. Two things were suggested for his puking 1) Wait it out. Many kids have puking problems until they are about 1 year old. 2) Have a nissen fundoplication surgery performed where the stomach is wrapped and secured around the bottom portion of the esophagus. The outcome of this is that when the stomach contracts it constricts around the esophagus not allowing anything to come up. We could not see putting Evan through another surgery especially one that seems so uncomfortable. It seems like it would feel completely awful not to be able to throw up even though your stomach is trying.

If you’re like us, you may be thinking, what about an allergy? We asked nurses, doctors, specialists, and the answer was always the same. “If it were an allergy, you would see other symptoms, blood in his stool, diarrhea, excessive fussiness, bad butt rashes, etc.” When he was 2-3 months old, we even tried different formulas and it didn’t seem to make a difference.

Fast forward several months…

Saturday February 23rd some friends rented rooms at the Holiday Inn so that all the kids could swim in the pool and have a little staycation. We took Evan but we didn’t swim long; the water was much too cold. Later that weekend Evan was puking a lot more than normal, 10+ times in a day. We gave him Pedialyte and stopped his Lasix to try and keep him hydrated. He did much better on the Pedialyte, hardly any puke at all. On Monday after our OT appt I took Evan to the pediatrician because with cardiac kids you need to be particularly careful about fluid levels and dehydration. The pediatrician said that Evan likely had a stomach virus and just needed time for it to pass. We should continue with Pedialyte for a couple days until the virus clears.

Sarah and I had begun re-talking talking about allergies over the past few days given how well Evan responded to his Pedialyte-only diet. I said to the pediatrician, “I know we have gone over this before but please tell me again why we think it’s not an allergy.” I got the same song and dance, blood, diarrhea, irritability…. but then at the end he sad, “but i’ll put in an order for milk allergy test and the next time he has blood drawn they will go ahead and run it.” We also got a hold of the cardiologist and she said to hold the Lasix until 24 hours past the point when the puking goes back to normal.

A couple days later, we thought Evan was over his illness and wanted to switch back to formula. His puking had not returned. Driven by this, we decided to not return to his Similac Sensitive and even bypassed a soy-based formula. We started giving Evan a formula called Nutramigen, a hypoallergenic formula for children allergic to milk protein, based on our gut instincts. He never puked.

A few days later Sarah took Evan to get his blood drawn and two days after that she came down to my office nearly in tears. The lab called and said that Evan’s test came back “highly positive” for a milk allergy.

Do something for me… think back to the last time that you puked, if you can. Do you remember how terrible it felt? Do you remember not being able to breathe? Did you retch and gag even if your stomach was empty? Do you remember the awful taste in your mouth? Evan does, he remembers it all so vividly that he doesn’t want to eat anything because he knows it’s just going to come back up and hurt him. Sarah and I will never forget how quickly and how purple Evan turns as he struggles to breathe through the puking. His circulation is already not great, add to that all of the vascular pressure involved in puking and it’s pretty scary. Highly allergic to milk?!? <mutters obscenities>

Since switching formulas on March 1, Evan has not puked once. Three weeks puke free! Moving from puking a minimum 5 times a day to nothing! How amazing is that? Such a simple thing. Just in the last 3 Evan’s eating has grown by leaps and bounds. He has eaten full containers of food and regularly wants to eat. We’re able to feed him 3-4 times a day now in small amounts. We’re treating it all as ‘extra’ food and he still gets his primary nutrition from the g-tube but he is well on his way.

Evan was scheduled to have surgery to revise his g-tube on April 11 at Cincinnati Children’s hospital. This surgery has been rescheduled to May 23. Perhaps he’ll be eating completely on his own by then and the g-tube can be our back-up (tube fed kids need to demonstrate consistent self-sustaining eating for a long time – months – before the tube is permanently removed). It’s going to sound really strange to most of you, but I will miss the g-tube at times. Giving medications? Easy. Feeding overnight for extra calories? Easy. Feeding in the car, in the stroller, etc. Easy. Toddler doesn’t want to eat? Tough, here you go.

Now for pictures… lots of them to post this time.

Feb 3 – Evan and Dadda at Superbowl Weekend Party