No Whey Dude

Don't have a cow man.

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.

Tough Love

Apparently, Julia loves her baby brother very much. She loves him so much that she wants him to stay her baby brother forever. As a result, she has instructed us to feed him the "kind of formula that makes him throw up" so that "he never grows up".

Now that's what I call funny AND insightful. She obviously has a firm grasp of the situation.

Hot Cocoa

Today the entire family paid me a visit at work. For a couple of weeks now Julia has been very interested in seeing my new desk. I think it's fun (and good) for her to see where I go every day. Additionally, it was good for Stacey and my coworkers to meet each other.

One of the nice things about working here is that we have access to free espresso. Each area in the building has a break room with an espresso machine in it. If you want an espresso or an americano you can drink as much as your adrenal glands can handle. The machine also dispenses hot cocoa, lattes, and mochas for only a quarter. The coffee is pretty good considering the cost - it's definitely better then what we have at home. I bet the machines pay for themselves in increased productivity alone.

Before the family headed over I asked Stacey to bring a couple of coffee mugs for all of us. I wanted Jules to get some hot cocoa and for us to share some cocoa/coffee together before they went on their merry way. The only problem was that neither of us had a quarter, let alone three. Julia came to the rescue. Great Grandma Heinz had given Julia a $20 bill when she was very little. We had cashed it in for some quarters and put them in a piggy bank years ago. What's so cute about the situation is not that Julia remembered that she had money, but that she INSISTED she bring three quarters, one for each of us, so that we could all buy a drink.

It's really nice to see her think about other people, even if it's just her parents. I think most kids this age tend to be pretty self-focused. The fact that she wanted everyone to have something to drink was pretty amazing.

Latest Doctor's Appointment

Today we had a follow-up appointment with Dr. Yazdi. We were feeling pretty good heading into the appointment for a few reasons. First, his 15 month appointment with the pediatrician on Monday had gone very well. According to the pediatrician, Jonathan had grown since his last appointment but had also settled on a growth curve. OK, so the growth curve was the one percentile, but that's still encouraging since he hadn't even been on a curve until now. The pediatrician said he would remove failure to thrive from his medical record going forward. Second, we had met another family at Julia's preschool whose son was about the same age and same size as Jonathan. Obviously, seeing someone else with another pint-sized son was encouraging. Third, we had made great progress on his feedings. The commonly accepted "norm" is that children need 100 calories per kilogram of body weight, which in Jonathan's case is somewhere in the 700s. With our food journal we're pretty confident Jonathan was getting well over 100% of what his body required.

The gist of our appointment was that Dr. Yazdi was disappointed (for lack of a better word) in Jonathan's weight gain since he has been getting enough to eat. His opinion is that either Jonathan is the type that requires more calories or there could be something else going, like a growth hormone deficiency. So, we're supposed to try and give him even more food and see an endocrinologist. Considering Jonathan is a very active kid, I can see that he might need/burn more calories. The boy never stops moving. If he's anything like Stacey or me though, gaining weight won't be easy. He could just be small and have a very active metabolism like his parents. I think if anything is wrong it's more likely to be something that an endocrinologist would find. If he's getting enough food and everything is proportional, just small, this could make sense.

A third possibility still is that everything is normal. His sister was referred to an endocrinologist a year ago but we never went. Since that time she has grown as expected so our pediatrician said on Monday that she didn't need to see one anymore (she was measured for weight and height before she got the flu mist). Maybe he just didn't grow in the past few weeks but will grow when he wants to. He just went through a growth spurt prior to this period of time, albeit it was the first time he consistently got food, so maybe he's done for a little while. Growing doesn't happen in a linear fashion.

We'll probably get him checked out by the endocrinologist just to be safe. Other then that, we're feeling pretty confident he's getting enough to eat overall. We're just buying time until he is a little bit older and can take over eating and drinking entirely on his own.

Loverboy

Jonathan has become quite the loverboy. Just in the past few days he has started giving us kisses. Most of the time it's when we're holding him. Other times, he'll run over from across the room and give our leg a hug and a kiss. The funniest part about it is that most of the time it involves sound effects. He makes sure we all hear his big smooching sound. When I'm holding him he usually doesn't stop at just one either, it's at least four or five fired off in rapid succession with a recoil of a good 12 inches. Julia was the same way, so obviously we must give our kids lots of affection. I'm sure it's partially nature, partially learned (mimicking us) behavior.

He hasn't forgotten his manly side though. I discovered this week that he also likes to watch football. Every time someone would run with or throw the ball, he'd smile. When a play ended he wanted more, making his sound for more until the next play started. Over and over again he's smile and make a sound. Judging by his speed and size, I think he'll make a good fullback...

ATV Wave

I just had to get a video of Jonathan waving. He loves to wave hello and goodbye on many occasions, such as heading upstairs to go to bed, when a plane is spotted in the sky, while I leave for work, and at pretty much every car that passes by our house while we're outside.

Happy Birthday Umpa

..and in case you're wondering, I wore this shirt in Michelle's honor.

Chicken Feet

Although we have child locks on the cabinets under the sink, Jonathan can still reach a few things with his small arms. Lately, he's been playing with Stacey's dish gloves. Julia got involved, and on her own decided to put them on her feet. She came around the corner and told Stacey, "Look, I'm a chicken!" She then proceeded to walk around the house clucking...

Longs Peak

Distance - 13 miles
Elevation Gain - 5,300 feet
Time - 11 hours

Nathan and I headed up to Rocky Mountain National Park on Saturday afternoon for some camping and hiking over Labor Day weekend. I hadn't camped out the night before hiking a 14er in a long time, so I suggested we extend the trip a little bit by arriving the day before. Longs Peak lives up to its name, so most people who are looking to summit need to start hiking around 3 a.m. We hit the sack about 7 p.m. and slept surprisingly well until the alarm went off at 2 a.m. We packed up camp, drove up to the ranger station, and were hiking with our headlamps by 3 a.m.

The Longs Peak trail head is probably one of the most commonly hiked routes in Colorado. The perfect weather and holiday weekend only made it more well-traveled then usual. The log book from the previous day had about 150 entries. Multiply that by the average party size not too mention those that didn't sign in, and I bet 500 people or more were on the trail the day before. I think the proximity to Denver and the fact that it's in a National Park and therefore there are bathroom facilities make it more popular then most other peaks. Looking back, the light from all of the headlamps made it look like I-25 instead of a trail.

That's why we choose to take the loft route around the southern section of the mountain. 99% of people take the standard route and approach it from the north because it's easier. When we returned to the trail head we saw that only about five others in the log book had taken the same route as we did. The loft route really isn't that difficult, you just have to remember that a lot of the people that go the other way probably don't have any business being on the mountain. I have never seen so many people climb a 14er in jeans and tennis shoes. Then again, a lot of people just hike partway up the trail on the standard route to the area known as the "keyhole".

We took the one less traveled by, and that has made all the difference. Our party was the first on the route this morning, so we didn't meet up with anyone else until the very end where the two routes meet at "the homestretch". All in all it was a pretty fun day. Our route involved a lot more scrambling, which beats walking any day of the week. By the end of the day, even though we had descended down the standard route via the keyhole at a causal pace, my feet and knees ached. Half a marathon and a mile of elevation gain is a pretty big day. In terms of those two numbers, it's one of the bigger days I've had on a mountain.

I didn't realize until now that this trip was a milestone event. I've now finished all of the 14ers on the Front Range. Only 75% of 14ers and six more mountain ranges left...

- Heading up the loft route as the sun rises. A granite formation resembling a chimney
- Coming up to the loft with the summit in view. Still about three hours to summit
- Descending so that we can cross the Notch before Keplinger's Couloir



- Sunrise hitting the other side of the granite formation resembling a chimney
- We were constantly surrounded by tall granite walls. How did that rock get there?
- A good look at the final push up to where our route meets up with the main trail
- Action shot. I had just crossed over from the other side of the big slab



- The homestretch, aka the bottleneck. This is the last climb with the summit in view
- Another shot of the homestretch. You can also make out a unique feature: painted route markers
- A look across the narrows, an exposed crossing on the standard route. It's that not big of a deal
- Getting ready to slide down a slab of rock as we were hiking down from the summit



- The often hard to spot "Clark's Arrow"
- Nathan and I at the summit. We didn't stay too long since the wind picked up
- A shot of the misty mountains between the summit of Longs and Pikes Peak in the distance



- The keyhole and shelter. Many casual hikers make it this point at 13,000 feet and then turn around
- You can see that this is a popular stop along the trail. It's probably five miles back to the trail head
- There were people even more crazy then us on Long's Peak today



- Nathan using the facilities unique to this peak. They even had TP and hanitizer
- Money shot of Longs. Our route up to the loft followed the large snow field to the left
- We sat for awhile and took in the view since our initial approach was in the dark

Colorado Cheeseball Classic

Nothing like hot air balloons and grandpa and grandma to start your morning off right...