State of the Charlie
May. 26th, 2011 10:52 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
marydellSo. As his fans will recall, Charlie has had a rough few months, with asthma, multiple changes to his allergy and asthma medicine, a pretty regular cycle of vomiting followed by respiratory infections, and ever-increasing rage problems. This is on top of his usual food allergy and eczema issues, poor little guy.
Most allergy medicines seem to have some kind of bad effect, but it wasn't tracking with known odd effects. For example, atarax, a first-gen antihistamine with anti-anxiety and sedative effects, made him so angry he might as well have turned green and tore his pants all up. Albuterol (bronchodilator for asthma attacks) didn't seem to help his asthma attacks very much. One night when he was coughing with an apparent asthma attack, we accidentally put his pulmicort (steroid to prevent asthma) into the nebulizer instead of his albuterol--harmless, but doesn't stop attacks. Except it did--he stopped coughing and went to sleep and was fine for the rest of the night.
This got us theorizing, and we started to suspect the pattern of cough/vomit/wheeze/respiratory infection that we were experiencing was not driven by asthma, but by reflux. Albuterol doesn't just dilate the airway, it also can dilate the esophagus, making reflux worse. And almost every medicine for respiratory infection--prednisone, antibiotics, motrin--can cause GI upset.
Following this hunch, and having already taken him off of the various angry-making asthma drugs, we started giving him two doses of kiddie tums daily. The coughing & vomiting totally stopped, and stayed stopped, although the bouts of anger continued. Next stop: the pediatric GI specialist, who agreed that reflux was causing the asthma flareups, and put Charlie on prevacid once a day.
On the prevacid, the rage flareups tapered off enough that we started to be able to track good days and bad days, instead of having all bad days. Next step: endoscopy. The experience of this was not fun; they had to try 3 times to get an IV into my poor baby, and he was terrified of basically everything, up until he was sedated, at which point we had to leave him. When he woke up he was perfectly cheerful, though, and wasn't scared of the machines etc any more, so he got through it ok. (He also got a trip to the train-specializing toy store in Berwyn, and a heap of train tracks, as a reward)
The verdict from the endoscopy is that he doesn't have Eosonophilic Esophagitis (whew) but he does have GERD and - surprise - a small hiatal hernia. So he's now on prevacid twice a day, plus tums twice a day, and we've just switched him to skim milk and low-fat bologna, since fat stays in the stomach longer than non-fat food, apparently, and so kids with GERD who drink a lot of milk should drink skim. Fortunately he likes it so far.
Meanwhile he's also had chronic constipation forever, and the GI doc said that's probably making the reflux worse and also is probably the other main reason for his bouts of rage (along with the pain from the reflux). He's got us giving Charlie Miralax every day, which is mostly doing the trick. To start off, though, he had us give him a giant dose of a different stool softener, because he said Miralax works better if you totally clear everything out first. If you ever want to feel like a character in a V.C. Andrews novel, crushing up 3 pills of full-adult-dose laxative and mixing them into your kid's ice cream and then spoon-feeding him the ice cream while telling him he's such a good boy is definitely a way to do that. Fortunately it worked without too much trauma, and he's a much happier boy now.
Each iterative change in the regimen has produced a dramatic improvement in his disposition and in his ability to control his temper, such that it's clear he's been MISERABLE for 6 to 9 months because of this fucking reflux problem, as well as the constipation making him touchy and unhappy. He is like a different little boy now, not just in that he is sweeter, but also his engagement with the world around him is very different. For quite a long while, he's been pretty focused and obsessed with certain toys (trains, mostly) and with his routine being as rigid as possible. Now he wants to play with different toys on different days; he's exploring the environment a lot more, he likes to sit and cuddle sometimes and other times wants to be alone. If he's ready for bed he'll go to bed even if it's early, and he just generally is a lot more flexible and curious.
We're not out of the woods yet, but the trees are thin here, and we can see the meadows over past the edge. I'm so grateful to have found a doctor who's really helping him--not that the other docs haven't been trying; they have! But asthma is a lot more common than GERD at this age, apparently, and so the focus has been on that when he may not even be truly asthmatic--he may just have reactive airway that's being set off by the GERD.
He had reflux for his entire infancy, and seemed to outgrow it after he reached a year, which is the usual thing in the majority of babies with reflux. So we took him off of Zantac when he was 14 months old...around the same time he started developing the temper of doom. To say I'm kicking myself for having taken him off of the Zantac is an enormous understatement. I wasn't able to write this entry up initially, in fact, because I was so upset by hindsight. Now that he's feeling substantially better and we can see a future where he's not in pain all the time, I'm a bit less horrified, but I'm still deeply not ok with the fact that he's apparently been in pain for a minimum of 6 months and more likely 9 to 18 months, intermittently anyway.
To end this on a non-medical note, here is link to a video of Charlie showing off his new rock-climbing skills. Nanna and Grandpa (my parents) very kindly gave us the funds to get him an awesome climber/slide thingy for the back yard, because he outgrew the little one he used last year, but isn't ready for a real swingset just yet. He's doing really well with gross motor skills, and is very pleased with his ability to climb up all by himself. http://www.flickr.com/photos/thrawn150/5743975466/
Most allergy medicines seem to have some kind of bad effect, but it wasn't tracking with known odd effects. For example, atarax, a first-gen antihistamine with anti-anxiety and sedative effects, made him so angry he might as well have turned green and tore his pants all up. Albuterol (bronchodilator for asthma attacks) didn't seem to help his asthma attacks very much. One night when he was coughing with an apparent asthma attack, we accidentally put his pulmicort (steroid to prevent asthma) into the nebulizer instead of his albuterol--harmless, but doesn't stop attacks. Except it did--he stopped coughing and went to sleep and was fine for the rest of the night.
This got us theorizing, and we started to suspect the pattern of cough/vomit/wheeze/respiratory infection that we were experiencing was not driven by asthma, but by reflux. Albuterol doesn't just dilate the airway, it also can dilate the esophagus, making reflux worse. And almost every medicine for respiratory infection--prednisone, antibiotics, motrin--can cause GI upset.
Following this hunch, and having already taken him off of the various angry-making asthma drugs, we started giving him two doses of kiddie tums daily. The coughing & vomiting totally stopped, and stayed stopped, although the bouts of anger continued. Next stop: the pediatric GI specialist, who agreed that reflux was causing the asthma flareups, and put Charlie on prevacid once a day.
On the prevacid, the rage flareups tapered off enough that we started to be able to track good days and bad days, instead of having all bad days. Next step: endoscopy. The experience of this was not fun; they had to try 3 times to get an IV into my poor baby, and he was terrified of basically everything, up until he was sedated, at which point we had to leave him. When he woke up he was perfectly cheerful, though, and wasn't scared of the machines etc any more, so he got through it ok. (He also got a trip to the train-specializing toy store in Berwyn, and a heap of train tracks, as a reward)
The verdict from the endoscopy is that he doesn't have Eosonophilic Esophagitis (whew) but he does have GERD and - surprise - a small hiatal hernia. So he's now on prevacid twice a day, plus tums twice a day, and we've just switched him to skim milk and low-fat bologna, since fat stays in the stomach longer than non-fat food, apparently, and so kids with GERD who drink a lot of milk should drink skim. Fortunately he likes it so far.
Meanwhile he's also had chronic constipation forever, and the GI doc said that's probably making the reflux worse and also is probably the other main reason for his bouts of rage (along with the pain from the reflux). He's got us giving Charlie Miralax every day, which is mostly doing the trick. To start off, though, he had us give him a giant dose of a different stool softener, because he said Miralax works better if you totally clear everything out first. If you ever want to feel like a character in a V.C. Andrews novel, crushing up 3 pills of full-adult-dose laxative and mixing them into your kid's ice cream and then spoon-feeding him the ice cream while telling him he's such a good boy is definitely a way to do that. Fortunately it worked without too much trauma, and he's a much happier boy now.
Each iterative change in the regimen has produced a dramatic improvement in his disposition and in his ability to control his temper, such that it's clear he's been MISERABLE for 6 to 9 months because of this fucking reflux problem, as well as the constipation making him touchy and unhappy. He is like a different little boy now, not just in that he is sweeter, but also his engagement with the world around him is very different. For quite a long while, he's been pretty focused and obsessed with certain toys (trains, mostly) and with his routine being as rigid as possible. Now he wants to play with different toys on different days; he's exploring the environment a lot more, he likes to sit and cuddle sometimes and other times wants to be alone. If he's ready for bed he'll go to bed even if it's early, and he just generally is a lot more flexible and curious.
We're not out of the woods yet, but the trees are thin here, and we can see the meadows over past the edge. I'm so grateful to have found a doctor who's really helping him--not that the other docs haven't been trying; they have! But asthma is a lot more common than GERD at this age, apparently, and so the focus has been on that when he may not even be truly asthmatic--he may just have reactive airway that's being set off by the GERD.
He had reflux for his entire infancy, and seemed to outgrow it after he reached a year, which is the usual thing in the majority of babies with reflux. So we took him off of Zantac when he was 14 months old...around the same time he started developing the temper of doom. To say I'm kicking myself for having taken him off of the Zantac is an enormous understatement. I wasn't able to write this entry up initially, in fact, because I was so upset by hindsight. Now that he's feeling substantially better and we can see a future where he's not in pain all the time, I'm a bit less horrified, but I'm still deeply not ok with the fact that he's apparently been in pain for a minimum of 6 months and more likely 9 to 18 months, intermittently anyway.
To end this on a non-medical note, here is link to a video of Charlie showing off his new rock-climbing skills. Nanna and Grandpa (my parents) very kindly gave us the funds to get him an awesome climber/slide thingy for the back yard, because he outgrew the little one he used last year, but isn't ready for a real swingset just yet. He's doing really well with gross motor skills, and is very pleased with his ability to climb up all by himself. http://www.flickr.com/photos/thrawn150/5743975466/
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no subject
Date: 2011-05-27 05:42 am (UTC)no subject
Date: 2011-05-27 07:45 am (UTC)As someone who was just a bit obsessed with VC Andrews in his youth, this made me literally laugh out loud. XD
But I'm glad you've been able to figure out what the problems were and things seem to be getting better! Also that slide set is awesome.
no subject
Date: 2011-05-27 02:16 pm (UTC)no subject
Date: 2011-05-27 05:02 am (UTC)no subject
Date: 2011-05-27 05:43 am (UTC)no subject
Date: 2011-05-27 05:50 am (UTC)One of my friends went through a similar bout of mis-directed diagnosis with her younger son; he had episodes where he arched his back and was being worked up for seizures. It turned out to be esophageal pain from reflux.
no subject
Date: 2011-05-27 07:35 am (UTC)no subject
Date: 2011-05-27 11:03 am (UTC)no subject
Date: 2011-05-27 11:15 am (UTC)Also, probably this shouldn't have made me laugh, but it did:
If you ever want to feel like a character in a V.C. Andrews novel, crushing up 3 pills of full-adult-dose laxative and mixing them into your kid's ice cream and then spoon-feeding him the ice cream while telling him he's such a good boy is definitely a way to do that.
Hooray for you, being able to have a sense of humor in all of this.
no subject
Date: 2011-05-27 11:24 am (UTC)no subject
Date: 2011-05-27 12:20 pm (UTC)I am SO GLAD that Charlie is feeling better!
no subject
Date: 2011-05-27 02:59 pm (UTC)I'm glad Charlie is doing so much better. It's rough when they can't tell you what's wrong.
no subject
Date: 2011-05-27 06:25 pm (UTC)Go Charlie go!
no subject
Date: 2011-05-27 07:51 pm (UTC)(I know the feeling--have had the "oh God I should have seen that sooner" experience more than once; fortunately never any permanent damage involved.)
Your son is a delightful child and has great parents.
no subject
Date: 2011-05-27 09:43 pm (UTC)I have said before that Charlie is lucky to have you as his parent. Nothing you've said here does anything but reinforce that to me.
no subject
Date: 2011-05-28 01:38 pm (UTC)And I too know so well that feeling of "why didn't I figure this out sooner?" (For one example, we didn't figure out till 7th grade that one of our kids had very serious ADD because it was without hyperactivity, and our experience at that point had been with major hyperactivity. The difference that medication made in the kid's school experience--and grades!--was huge.)
May his health just get better from here on!