Allergic reaction to cow's milk?

Auggie vomited last night, developed a fever and was fatigued all day today.  After a very mucousy poop we decided to call the doctor and started questioning whether we were seeing an allergic reaction to dairy.  These slow reacting allergies can take days to appear, so it is possible that although yesterday was day #3 drinking cow's milk, he could have had a recation to it as we have slowly been increasing the ratio of cow's milk in his "formula".  All dairy is out for now as we wait for him to recover.....:(  we get so bummed out when he's sick because we work so hard to get those calories into his body. 

Auggie is on an appetite stimulant

We don't know why Auggie doesn't eat very much, but we now have him on periactin which is an anti-histamine but also acts as an appetite stimulant.  I mix it in with his yogurt.  He's been getting 1ml twice a day, but I might try increasing it to three times a day. He has increased the amount of solids he eats by about 50% and his drinking by about 20%, so it seems to be working. Now we're just waiting for the extra calories to translate into extra ounces.

"He looks different, but he's cute"

We know that Auggie looks different and our very honest acquaintance was just saying what others only dare think.  We also know that he is a very smart boy and that his "condition" or "syndrome" or whatever it may be is probably not going to affect his intellectual capacity or his quality of life.  He has suffered some developmental delay while on the feeding tube, but we think he will catch up. At 15 months he is still not walking but he is a very fast crawler and is very agile and comfortable with his movements.  We have a follow-up with the cardiologist in July, the geneticist in August and the GI doctor in August as well. In the meantime it's a full time job trying to make sure that he consumes enough calories.  His weight has stalled but we hope that the recent addition of dairy to his diet will help.  He is weighed every day and every teaspoon of food he eats is recorded and tracked.  He still has feeding therapy mostly to help him drink more.  He still will not drink any large amounts on his own - we use Mr. Juice Bear for kefir and his "formula" is still delivered in a baby bottle.  His verbal skills are improving.  He has about 10 words, the most recent one being "hi" while waving wildly!!  He really is a cute boy with a fun personality.

So far, he's tolerating dairy really well!!

Auggie now eats cow's milk yogurt and kefir and I mix heavy cream and grated cheese into just about everything I can.  He loves cheesy rice - kind of like Mac 'n cheese but with rice.  I tried giving him milk to drink but he seemed to balk at the taste (or did I?  I'm not a big fan of milk).  It's hard not to let your own preferences and biases get in the way.  He's still not gaining very much weight, but he's very active and happy so I guess he's doing okay...burning too many calories.....

Introducing dairy

We've decided to introduce dairy into Auggie's diet even though we suspect that he might have some type of allergy or intolerance.  We started by giving him yogurt - first a couple of teaspoons and then after a few days we were up to 1-2 ounces.  He did not have any problems with it except getting used to the taste - it's more tart than his coconut milk yogurt. We now mix the two 50/50 and some days he will eat it.  After about 1 week of eating yogurt we started giving him grated cheese - organic monterey jack - and so far he is tolerating it well.  I mixed the cheese with some rice, broccoli and coconut oil.  I have to say that we're really surprised to discover that he tolerates dairy so well.. Next we'll try butter and then heavy cream and whole milk. The reason for introducing dairy in steps is that yogurt and cheese contain less lactose than milk, so they're usually better tolerated than milk. I will be so excited if he tolerates milk and cream as I know that he'll love eating whipped cream and it would be a great source of calories.  He is very skinny right now and we're running out of ideas on how to fatten him up....

Development - Auggie sips 50% on his own!!

Auggie has clearly decided that he is going to be in charge.  He has slowed down his bottle time and has picked up drinking on his own.  It seems like a change occurred overnight where he just woke up and knew that he had to drink - something clicked and now he gets it!  He likes sipping coconut kefir from his Mr. Juice Bear but will also sip rice milk from a Nuby bottle with straw or just take sips of water from my glass or his own doidy cup.  I recommend all three products although the Nuby Flip-it straw sipper can be hard to sip from as it requires a strong suck - this can be overcome by cutting a hole into the silicone straw (which we did and it works great).

Doidy, Mr. Juice Bear, Nuby Flip-it Cup

Results: RAST allergy testing

Auggie had an appointment with his GI doctor last week who thought that despite very slow weight gain, he looked good.  He is still not even on the charts for weight and he is following his curve for length at 9th percentile.  He's a skinny little guy but quite strong!  While we were there he also had some blood drawn for a standard CBC which showed nothing wrong - iron, albumin, hemoglobins and his total blood count looked great.  We also had them do a standard IgE food panel which came up negative. So, now we know that he does not have fast reacting allergies when it comes to the most allergenic foods, but we suspect that he has slow reacting allergies that are not easily diagnosed.  The next step is a meeting with another allergist and careful trial and error with food.  We tried oats and 4 hours later Auggie had mucousy stools with blood threads.  We're trying yogurt tomorrow because although we suspect some sort of dairy allergy, yogurt is often more easily tolerated as it is more easily digested than milk.