We've finished the round of tests that were scheduled from our second opinion appointment. Although I posted earlier that the gastric emptying test came back normal (based on what I read), the doctor felt that it still wasn't fast enough to not put Jonathan on medication. Our second study showed that Jonathan is still having some reflux issues as well.
Other then those two things, everything else came back normal. We've tested for pretty much everything from Celiac to Crohn's to malabsorption. Everything also looks good structurally speaking and there wasn't a blockage, so we're quickly coming to the end of things we can address with his GI system. Obviously, we've done all the standard blood and lab work over the past few months that would show something else was going on. The only study we haven't done yet is a colonoscopy (with biopsy), which we may look at doing in the coming months if he still isn't gaining enough weight.
For now we are going to give him medication that should help with reflux and a medication that will hopefully decrease the time his stomach takes to empty (Bethanechol). Also, we're starting the feeding clinic tomorrow. There is a slight chance that Jonathan is one of those people where liquid actually takes longer to empty then solid food. If we can get him to start eating on his own while on the medication we may see some good gains in weight.
I can see a situation where there is nothing wrong with him other then reflux and a slow stomach. The combination of being full and associating eating with unpleasantness could explain why a genetic predisposed small person is even smaller. He's basically the same height as Julia was at this age but he's a lot lighter. We're trying to avoid a permanent surgery on his stomach and hope that we can just teach him how to eat on his own.
The point is we're getting close to where we think we've done enough testing to figure out what is and isn't going on. Getting him to eat on his own and managing his caloric intake might be all we do over the next few months.
29 January 2012
24 January 2012
Julia Maguire
D'you know that the human head weighs 8 pounds? D'you know that bees and dogs can smell fear? D'you know that my next door neighbor has three rabbits?
21 January 2012
20 January 2012
Gastric Emptying Study
Today we spent a few hours repeating the gastric emptying study that was done while we were in the hospital. We had our doubts about the accuracy of the test since it was done after Jonathan had been sick and possibly while on medication that would affect the results.
Overall things went pretty well. Jonathan had to stay in his car seat for about an hour after the radiology tech had spiked a few ounces of his formula with "Illudium Q-36 Explosive Space Modulator" particles. As you can see in the middle picture below, towards the end of the study you could see two main groupings: the amount still in his stomach and the amount that had worked its way down into his small intestine. They had a television to distract him, but he mainly played with me, my watch and my keys over that hour. He liked putting my watch on his legs and the carabiner that holds my keys on his toes.
The results came back slightly better then the first test. In the hospital he had emptied 48% after an hour, but today preliminary results were falling anywhere between 53 - 58%. No matter the exact number, it's an improvement, a good 10 - 20% better then before, and considered normal. The first test in the hospital was right after he was sick, which can slow things down. I also noticed that on the first test we used a milk-based formula instead of the hypoallergenic kind we are using now. Maybe that could have affected things too if his diet had been irritating him, although the sickness was probably more of a factor.
Next week we're going to do a similar study but follow it through the small intestine. Maybe that will give us some new information and highlight what's going on, if anything.
Overall things went pretty well. Jonathan had to stay in his car seat for about an hour after the radiology tech had spiked a few ounces of his formula with "Illudium Q-36 Explosive Space Modulator" particles. As you can see in the middle picture below, towards the end of the study you could see two main groupings: the amount still in his stomach and the amount that had worked its way down into his small intestine. They had a television to distract him, but he mainly played with me, my watch and my keys over that hour. He liked putting my watch on his legs and the carabiner that holds my keys on his toes.
The results came back slightly better then the first test. In the hospital he had emptied 48% after an hour, but today preliminary results were falling anywhere between 53 - 58%. No matter the exact number, it's an improvement, a good 10 - 20% better then before, and considered normal. The first test in the hospital was right after he was sick, which can slow things down. I also noticed that on the first test we used a milk-based formula instead of the hypoallergenic kind we are using now. Maybe that could have affected things too if his diet had been irritating him, although the sickness was probably more of a factor.
Next week we're going to do a similar study but follow it through the small intestine. Maybe that will give us some new information and highlight what's going on, if anything.
19 January 2012
Test Results
Today we received a few of the results from some of the tests run on Jonathan last week. The good news is that Cystic Fibrosis and Malabsorption both came back negative. On to the next set of tests. Tomorrow we repeat the gastric emptying study that was done in the hospital about 9 months ago.
In a weird way I was hoping that the test for Malabsorption would yield a positive result. Don't get me wrong, I'm glad in the long run that it isn't, but that would have explained why he isn't gaining weight. Additionally, depending on the case, it's fairly easy to treat. Another way to look at it is that a positive result for Malabsorption would have been the quick and easy answer...
In a weird way I was hoping that the test for Malabsorption would yield a positive result. Don't get me wrong, I'm glad in the long run that it isn't, but that would have explained why he isn't gaining weight. Additionally, depending on the case, it's fairly easy to treat. Another way to look at it is that a positive result for Malabsorption would have been the quick and easy answer...
18 January 2012
Fantasy Football
I've been officially voted in as the new commissioner of our fantasy football league at work. Actually, it's only because the previous commissioner left and I happened to be the only other person who had been a commissioner in the past. So, this means I've just completed my third year in a row as commissioner.
This new league is already running more smoothly. One of the items on my agenda was to create an inexpensive trophy or award that we could pass around each year. I came up with the plaque below. Not only did it cost me a mere $5.37 to make, I also got pizza out of the deal. Unfortunately, there wasn't enough space to list the runner up. Otherwise, my name would have been on this bad boy for 2011.
This new league is already running more smoothly. One of the items on my agenda was to create an inexpensive trophy or award that we could pass around each year. I came up with the plaque below. Not only did it cost me a mere $5.37 to make, I also got pizza out of the deal. Unfortunately, there wasn't enough space to list the runner up. Otherwise, my name would have been on this bad boy for 2011.
17 January 2012
Too School For Cool
I'm glad that we started Julia in preschool. She already knows how to write her name, the entire alphabet, and most of her numbers to twenty. Since she also is learning Spanish, she knows how to say a few colors in Spanish too. While we were playing yesterday she decided to count out loud to ten in Spanish. I had no idea she knew that.
Although she's shy at school, she still learns things quickly. I don't think she'll ever have a problem in school since she's so quick and also very inquisitive. I can already tell that she likes to learn, and combined with her patience and long attention span, I think school is going to be easy for her. The problem we'll probably face with her is having enough things to do so that she stays busy.
Although she's shy at school, she still learns things quickly. I don't think she'll ever have a problem in school since she's so quick and also very inquisitive. I can already tell that she likes to learn, and combined with her patience and long attention span, I think school is going to be easy for her. The problem we'll probably face with her is having enough things to do so that she stays busy.
15 January 2012
Master Bedroom
Since I had Monday of this week off from work (MLK), I was able to finish painting the crown molding in the master bedroom and master closet. I worked on it for nine hours straight. I probably could have finished sooner, but I'm consciously taking my time so that it turns out right. When I woke up Sunday morning I really didn't feel like painting. However, I psyched myself up and once again put in a full day's work.
In case you're wondering, I'm keeping a record of my progress on house projects on this blog so that I can look back with fond memories and say things like, "I remember when...", and, "can you believe that's what our house looked like back in the day?", and so forth.
In case you're wondering, I'm keeping a record of my progress on house projects on this blog so that I can look back with fond memories and say things like, "I remember when...", and, "can you believe that's what our house looked like back in the day?", and so forth.
11 January 2012
Second Opinion Appointment
Today we had our appointment with a different pediatric gastroenterologist to get a second opinion on Jonathan. This doctor works at Children's Hospital in Denver but regularly sees patients down here. As I've mentioned before, we sought a second opinion because it's something good to do but also because things haven't been moving along fast enough.
When we first met the new doctor I made it clear that we were here for a second opinion and looking to move forward with some testing so that we could confirm or rule out what was going on. Up to this point we haven't felt that we've actually determined what the root problem really is. I know we're trying to get Jonathan fed, but it's entirely possible that we could also rule out a lot of other issues at the same time. We've been wondering why we haven't moved forward all this time with testing, the feeding clinic, and other options.
We were impressed by the visit. Dr Waasdorp (a woman), was a much better communicator and explained many things to us. We have a followup appointment with her in eight weeks, so depending on how everything goes we could conceivably start working with her office instead. The outcome of the visit was very pleasing to us. Without going into too many details about the appointment, we've been scheduled for multiple tests in the coming weeks. In my opinion, the tests that we're having done should have been addressed at the very beginning. Although it's unlikely that Jonathan has something else major going on based on symptoms, we have never actually confirmed the assumptions with testing.
Since I am writing this a few days after the appointment, we've already tested Jonathan for Cystic Fibrosis. On Thursday of this week Stacey took Jonathan down to Memorial Central for a couple of hours to complete the test. As I mentioned above, the likelihood that Jonathan has CF is probably very low, but lack of growth is a main symptom associated with CF. One would think that this should have been ruled out upfront, but it hadn't been addressed until this point. The test method was actually very interesting. CF can be tested through our sweat. They essentially hooked up two electrodes to Jonathan's underarm on his forearm, and stimulated the sweat glands with an electrical current. They then put a patch over the area that contained a small tube that collects the sweat (like a large bandage), and then Stacey walked around the hospital with Jonathan for about an hour while his sweat was collected. We should know the results sometime early next week.
The other issue we addressed was malabsorption. This simple test involved us giving the lab a stinky diaper. Although Jonathan's diapers haven't been showing signs of obvious malabsorption, it's still possible. I recall reading something where a very small percentage of malabsorption cases can only be seen under a microscope and confirmed with testing. Although it's unlikely, we never actually tested for it in the past. If Jonathan hasn't been absorbing either fat, protein, and/or carbohydrates correctly, then that would obviously affect his growth. The good news is that malabsorption is simple to treat - all we would have to do is orally give him the enzymes that his body isn't producing and that should solve the problem. We'll find out the results of this test early next week too.
At the end of next week we're going to head back to Memorial to repeat the gastric emptying test that was done when we were in the hospital last spring. In the past we've asked Yazdi if we could repeat this test because of many reasons. He didn't feel like it was necessary, but we disagreed. The main assumption that we're basing our treatment on right now is that Jonathan's gastric emptying time is borderline normal. That's fine, except that when we did the test in the hospital Jonathan was just getting over being very sick involving his GI system. Secondly, we're not quite sure (can't remember exactly) whether or not Jonathan had already been given Reglan before the emptying test. We think he was, and since that drug is designed to speed up his system, it would mean the test results would be effectively inaccurate and would not have done under the appropriate circumstances. Repeating the test while not on any drugs and healthy should provide a more accurate result. If it confirms the first test, then we can rest assured. If things come back slower then before, then we can address the real issue moving forward instead of what we have been doing - operating with incorrect information. In the short term, if his system comes back too slow, Waasdorp said she would give us a prescription that should help and we can address that issue instead of assuming it's something that we should be able to work with.
The fourth test, schedule in two weeks, will be an upper GI and small series study. The link has a very good summary of the test. This test like the gastric emptying test, also involves swallowing something like barium and then watching what happens on an x-ray as is moves through the stomach and small intestine. An abnormal result can identify all sorts of things, including issues in the stomach or a narrowing of the "drain plug" at the bottom of the stomach, but also intestinal issues such as malabsorption, swelling or irritation of the small intestines, and tumors/ulcers. I'm glad that we're finally starting to examine these functions of the small intestine considering Stacey's family history with related issues like Crohn's, Celiac, etc.
Given all of these tests, we'll be a lot more informed about what the real problem really is. The final result from the appointment this week is that we're going to start the feeding clinic in March. We need to start the process of Jonathan eating on his own. As I've mentioned before, we'll work with him until he can eat enough on his own during the day and we'll just have to feed him at night. Eventually he'll be able to eat enough of the right foods on his own and we can stop using the pump altogether. Additionally, we'll have individual and groups sessions at the clinic, so we'll get to meet some of the other parents out there that are dealing with the same issues we are. I'm excited about Jonathan learning to eat on his own, since that will be the end of the feeding pump and tube. While there, we'll learn what he likes to eat and what would be an appropriate diet considering his issues and allergies.
We're very happy that we sought out a second opinion. Even if nothing comes back we'll at least know for sure what we're dealing with. It's time to start moving forward and we're glad that we found a doctor that agrees with us on this topic.
When we first met the new doctor I made it clear that we were here for a second opinion and looking to move forward with some testing so that we could confirm or rule out what was going on. Up to this point we haven't felt that we've actually determined what the root problem really is. I know we're trying to get Jonathan fed, but it's entirely possible that we could also rule out a lot of other issues at the same time. We've been wondering why we haven't moved forward all this time with testing, the feeding clinic, and other options.
We were impressed by the visit. Dr Waasdorp (a woman), was a much better communicator and explained many things to us. We have a followup appointment with her in eight weeks, so depending on how everything goes we could conceivably start working with her office instead. The outcome of the visit was very pleasing to us. Without going into too many details about the appointment, we've been scheduled for multiple tests in the coming weeks. In my opinion, the tests that we're having done should have been addressed at the very beginning. Although it's unlikely that Jonathan has something else major going on based on symptoms, we have never actually confirmed the assumptions with testing.
Since I am writing this a few days after the appointment, we've already tested Jonathan for Cystic Fibrosis. On Thursday of this week Stacey took Jonathan down to Memorial Central for a couple of hours to complete the test. As I mentioned above, the likelihood that Jonathan has CF is probably very low, but lack of growth is a main symptom associated with CF. One would think that this should have been ruled out upfront, but it hadn't been addressed until this point. The test method was actually very interesting. CF can be tested through our sweat. They essentially hooked up two electrodes to Jonathan's underarm on his forearm, and stimulated the sweat glands with an electrical current. They then put a patch over the area that contained a small tube that collects the sweat (like a large bandage), and then Stacey walked around the hospital with Jonathan for about an hour while his sweat was collected. We should know the results sometime early next week.
The other issue we addressed was malabsorption. This simple test involved us giving the lab a stinky diaper. Although Jonathan's diapers haven't been showing signs of obvious malabsorption, it's still possible. I recall reading something where a very small percentage of malabsorption cases can only be seen under a microscope and confirmed with testing. Although it's unlikely, we never actually tested for it in the past. If Jonathan hasn't been absorbing either fat, protein, and/or carbohydrates correctly, then that would obviously affect his growth. The good news is that malabsorption is simple to treat - all we would have to do is orally give him the enzymes that his body isn't producing and that should solve the problem. We'll find out the results of this test early next week too.
At the end of next week we're going to head back to Memorial to repeat the gastric emptying test that was done when we were in the hospital last spring. In the past we've asked Yazdi if we could repeat this test because of many reasons. He didn't feel like it was necessary, but we disagreed. The main assumption that we're basing our treatment on right now is that Jonathan's gastric emptying time is borderline normal. That's fine, except that when we did the test in the hospital Jonathan was just getting over being very sick involving his GI system. Secondly, we're not quite sure (can't remember exactly) whether or not Jonathan had already been given Reglan before the emptying test. We think he was, and since that drug is designed to speed up his system, it would mean the test results would be effectively inaccurate and would not have done under the appropriate circumstances. Repeating the test while not on any drugs and healthy should provide a more accurate result. If it confirms the first test, then we can rest assured. If things come back slower then before, then we can address the real issue moving forward instead of what we have been doing - operating with incorrect information. In the short term, if his system comes back too slow, Waasdorp said she would give us a prescription that should help and we can address that issue instead of assuming it's something that we should be able to work with.
The fourth test, schedule in two weeks, will be an upper GI and small series study. The link has a very good summary of the test. This test like the gastric emptying test, also involves swallowing something like barium and then watching what happens on an x-ray as is moves through the stomach and small intestine. An abnormal result can identify all sorts of things, including issues in the stomach or a narrowing of the "drain plug" at the bottom of the stomach, but also intestinal issues such as malabsorption, swelling or irritation of the small intestines, and tumors/ulcers. I'm glad that we're finally starting to examine these functions of the small intestine considering Stacey's family history with related issues like Crohn's, Celiac, etc.
Given all of these tests, we'll be a lot more informed about what the real problem really is. The final result from the appointment this week is that we're going to start the feeding clinic in March. We need to start the process of Jonathan eating on his own. As I've mentioned before, we'll work with him until he can eat enough on his own during the day and we'll just have to feed him at night. Eventually he'll be able to eat enough of the right foods on his own and we can stop using the pump altogether. Additionally, we'll have individual and groups sessions at the clinic, so we'll get to meet some of the other parents out there that are dealing with the same issues we are. I'm excited about Jonathan learning to eat on his own, since that will be the end of the feeding pump and tube. While there, we'll learn what he likes to eat and what would be an appropriate diet considering his issues and allergies.
We're very happy that we sought out a second opinion. Even if nothing comes back we'll at least know for sure what we're dealing with. It's time to start moving forward and we're glad that we found a doctor that agrees with us on this topic.
09 January 2012
Morning Person
Jonathan is getting to be a lot fun. Sure, he's still a wild man at only 19 months old, but he's also pretty entertaining. Some of the funniest things he does happen right when he wakes up from sleeping. Usually it involves talking and pointing at everything - he has a lot to say about everything it seems.
This morning he woke up and I went upstairs to get him. He told me all about my zipper and his shirt, among other things. When I picked him up he was still trying to wake up, so I just held him for a minute or two. After he had rubbed the sleep from his eyes, while I was still holding him, he lifted up his head from my shoulder and smiled large at me. I smiled back, then he put his head back down on my shoulder. Then, he did it again, and it was obvious that he was playing around and trying to play peek-a-boo with me. Every time he would put his head back down he would laugh, then I would laugh, which made him laugh harder, etc.
We played around like this a few times. It was pretty hilarious and a good start to both of our Monday mornings.
This morning he woke up and I went upstairs to get him. He told me all about my zipper and his shirt, among other things. When I picked him up he was still trying to wake up, so I just held him for a minute or two. After he had rubbed the sleep from his eyes, while I was still holding him, he lifted up his head from my shoulder and smiled large at me. I smiled back, then he put his head back down on my shoulder. Then, he did it again, and it was obvious that he was playing around and trying to play peek-a-boo with me. Every time he would put his head back down he would laugh, then I would laugh, which made him laugh harder, etc.
We played around like this a few times. It was pretty hilarious and a good start to both of our Monday mornings.
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