The past week or so Jonathan has been growing up right before our very eyes. Although it’s been obvious for a while that he’s been aware of his surroundings, only lately has he started to communicate back to us. He talks a lot of gibberish, but now we at least know whether the answer is yes or no.
We know this because he now nods or shakes his head. Shaking his head is pretty standard – it’s the nod that cracks us up each time. It’s very exaggerated and involves most of his body. I’d say it’s a combination of a bow and a head bang. It’s hard to mistake at any rate. We’ve had a lot of fun asking him questions and watching him answer.
He’s all boy but still show signs of sweetness. Last Sunday he and I were playing in the living room together. He kept pointing to the top of the fireplace, so I asked him if he wanted to sit above it on the ledge. He bowed and nodded (and almost hit his head on the tile around the fireplace) so I picked him up and placed him at the top. He likes playing the game where he sits on the ledge and slides off into my catching arms. After a few times I would catch him and we would purposely fall to the ground. We would roll around and then he’d pretend to bite my chest. About the third or fourth time of falling to the ground he decided to sink his teeth into me. I let out a yelp because it really hurt. He was initially taken back, but then realized that his biting really had hurt me. Instead of laughing or running around, his response was to take a couple steps towards me and to give me a kiss on the forehead. It was definitely his way of apologizing and making sure I was OK.
Not to be outdone, Julia had an interesting observation at dinner on Wednesday. We had salad for dinner topped with black beans and corn. Julia said that we were eating salad with deer poop on the top. I guess I had never thought of black beans that way, but they pretty much look identical to deer droppings. I guess that explains why she doesn’t like them very much.
30 September 2011
29 September 2011
First Field Trip
Mrs. Graham's Preschool Class (and two others) - Pikes Peak Christian School
(photography, escort services, pack mule and moral support by Mom)
(photography, escort services, pack mule and moral support by Mom)
24 September 2011
Droppin FPIES Bombs
On Monday, October 3, we have an appointment scheduled with the allergist for Jonathan. Two posts ago I talked about allergies, and after doing some more research his symptoms seem more consistent with a specific class of allergies - the non IgE mediated class.
To give you a quick summary, IgE mediated responses are what I commonly think of when I hear the word allergy. Hives, eczema, immediate reaction to foods, seasonal allergies, and other food allergies like peanuts. It seems to be the most common and well understood of the two. The other kind, non IgE mediated allergic responses, are associated with disorders such as Celiac (a type of protein enteropathy), FPIES, and I read even something such as Crohn's disease.
These types of disorders are a lot more consistent with vomiting and low weight or failure to thrive. We haven't experienced any other symptoms in Jonathan that you would expect with the standard IgE allergy type. The point is, with a family history of food allergies, Celiac, and Crohn's on Stacey's side, we need to determine if any of these things are complicating the situation (if not the cause of everything). Even if we determine nothing is wrong we can at least check it off the list. Our appointment is supposed to last anywhere from one to three hours. I hope on that same day we can start running some tests.
If you're interested in reading a good summary article, click on the World Allergy Organization link. Halfway down the article you'll find a description and example of the different kinds of non IgE mediated food allergic disorders. This would explain his lack of growth and vomiting in addition to what we've observed when he drinks milk or has milk-based formula.
To give you a quick summary, IgE mediated responses are what I commonly think of when I hear the word allergy. Hives, eczema, immediate reaction to foods, seasonal allergies, and other food allergies like peanuts. It seems to be the most common and well understood of the two. The other kind, non IgE mediated allergic responses, are associated with disorders such as Celiac (a type of protein enteropathy), FPIES, and I read even something such as Crohn's disease.
These types of disorders are a lot more consistent with vomiting and low weight or failure to thrive. We haven't experienced any other symptoms in Jonathan that you would expect with the standard IgE allergy type. The point is, with a family history of food allergies, Celiac, and Crohn's on Stacey's side, we need to determine if any of these things are complicating the situation (if not the cause of everything). Even if we determine nothing is wrong we can at least check it off the list. Our appointment is supposed to last anywhere from one to three hours. I hope on that same day we can start running some tests.
If you're interested in reading a good summary article, click on the World Allergy Organization link. Halfway down the article you'll find a description and example of the different kinds of non IgE mediated food allergic disorders. This would explain his lack of growth and vomiting in addition to what we've observed when he drinks milk or has milk-based formula.
22 September 2011
Big Sis
Julia has been helping out lately. She actually thinks it's fun and does a great job too. I'm sure this will only last for a few weeks. We're going to take advantage of it while it does.
20 September 2011
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:
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.
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.
17 September 2011
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.
Now that's what I call funny AND insightful. She obviously has a firm grasp of the situation.
16 September 2011
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.
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.
14 September 2011
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.
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.
13 September 2011
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...
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...
12 September 2011
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.
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