Since my latest post Jonathan has been struggling to keep his feedings down. We're coming up on a week since he has been able to take the full amount. It always seems that after we visit the doctor things go crazy. I thought these visits were supposed to help Jonathan out, not take a few weeks to recover from. I say that only half-jokingly, considering our latest observations.
Our next course of action will be to see an allergist in order to determine if/what he may be allergic to. Even if it's not related to our current situation, we think there is enough evidence that he has an allergy of some sort that we need to get it checked out. If he doesn't, then we can at least eliminate the possibility. Why we haven't done this already (either on our end or referred by our doctor) is a question I don't know the answer to. These allergens can be passed through breast milk, which would also explain why he never wanted to eat when he was nursing.
Long story short we suspect he has an allergy to milk, specifically whey. Lots of kids have an allergy to milk - in fact, it's the most common food allergy out there. Casein protein is the curd in milk and whey protein is the watery part left over when the curds are removed. This would explain why he can only tolerate hypoallergenic formulas, such as Elecare, because they are amino acid-based (not milk-based). Many of the regular formulas are milk-based, composed of casein or whey. Like a detective, the story wasn't clear until we started putting the clues together and researching our suspicions after the fact. From what we can remember, shortly after using whey-based products, Jonathan has become sick (including this week).
Example #1
After the first visit to Dr Yazdi he gave us Enfamil Lipil. We tried and tried to get Jonathan to take this formula by essentially force feeding him. During this first phase of our "adventure", he vomited it up frequently. Tonight, upon further review, we realized that Enfamil Lipil is whey-based.
Example #2
Although we assumed Jonathan picked up something terribly bad at the Children's Museum in Denver, he also drank a decent amount of milk the day after. Milk obviously has whey and casein in it. The result was that we were in the hospital with a very sick kid for two weeks.
Example #3
After last week's visit to Dr Yazdi we were given Peptomen, a high calorie formula to help him gain weight. Hours after giving it to him (overnight) he started his current vomiting streak. You guessed it, Peptomen is whey-based as well. As a side note, we are very disappointed that we were giving this formula when the doctor knows and has prescribed a hypoallergenic food all this time. We didn't think about that until it was too late. We have repeatedly told him that it seems he can only keep the hypoallergenic variety down. This, in addition to the rushed nature of many appointments, may have pushed us to seek a second opinion, most likely in Denver.
On the flip side, Jonathan has been able to tolerate formulas that have been casein based or where the protein is completely broken down (i.e. pre-digested).
Example #1
We used Boost formula in the past. Although it's made with milk and not hypoallergenic, we found that he was able to keep it down for awhile. Eventually he had issues with it. A delayed reaction in this case supports the ingredients and a cumulative, delayed response. Boost is primarily casein-based, but it does have a small amount of whey in it. In small does, such as overnight, he was able to manage it. After enough time and exposure I could see where the cumulative effect was what eventually caused the problem. Or, at the very least, while we were giving him Elecare during the day and Boost at night, Boost was interfering with our progress. The reason being is how the body reacts to an allergen, which I'll talk about later.
Example #2
We have also had good luck with Alimentum, a lesser hypoallergenic formula. Alimentum is casein-based, but the protein is broken down or pre-digested (casein hydrolysate). This is still consistent with what we've observed.
What you have to realize is that a milk allergy triggers and immune system response. It's different then being lactose intolerant. Here is a good summary of what happens:
When a person who is allergic to milk eats a food that contains milk products, the body's immune system mistakenly sees the milk proteins as dangerous "invaders." The immune system responds by creating specific antibodies, which are designed to fight off the "invader." These antibodies - called immunoglobulin E (IgE) - trigger the release of certain chemicals into the body, one of which is histamine.
So when a person with a milk allergy eats a food that contains milk, the immune system unleashes an army of chemicals to protect the body. The release of these chemicals can affect the respiratory system, gastrointestinal tract, etc.In our case, it would be affecting the gastrointestinal tract and causing Jonathan to vomit. We scheduled another appointment with Dr Yazdi on Thursday of this week to discuss everything. We'd like to hear his opinion, but our ultimate goal is to get a referral to an allergist. We need to do this now. I am a little embarrassed that we've waited this long since this seems so obvious now. Bottom line though is that things take time to flush out and in the past this would have probably been paid for out of pocket.
Tomorrow I'm going to address FPIES, considering Stacey's long family history of allergies and intestinal disorders. Cow's milk could be an allergy, but it could also be the trigger that sets off this syndrome. It could very well be that the root cause of everything is FPIES, or Food Protein Induced Enterocolitis Syndrome. To date, this sounds like the most likely candidate. Hopefully we will gain some answers soon. The very good news is that most children with milk allergies and/or FPIES grow out of it by the age of three.