Hi, all.
L is still doing well. Her liver labs are still good and her IBD is staying quiet. She's had good liver numbers for 18 months now. Her doc originally mentioned trying to come off the aza after two years of normal liver labs, so I'll be asking if that is still expected when we have her next appointment, and if it is, how we are going to treat the IBD.
You may remember that about a year ago I had some worried about my youngest son, now two. He has had very slow growth and weight gain. Our pediatrician referred him to someone at children's Colorado and I never wrote about it here afterwards because I was so angry and embarrassed. The doc we saw told me I was a coddling mother. She said that because I have four kids there must be food always available and I was just letting S graze and keeping him from getting hungry. She also told me I had to stop nursing him and put him on a strict schedule. If I did these things, he would gain weight. She promised to do bloodwork, but she only ran a CBC.
Anyway, I was stunned. I'm not a rigid scheduler, so I was afraid maybe she was right and I just wasn't feeding him correctly. But I felt really let down. When I talked with our pediatric at home we agreed to monitor his weight here. I made a big effort to give him more structured feedings and he did gain a little more weight. (I didn't stop nursing, though, and still nurse him down for naps and bed). However, his weight has never really jumped up and every time he gets sick he loses a few ounces. Now we've had a run of colds and stomach viruses since Thanksgiving, and S has lost half a pound in the last month. To give this perspective, he was still far below the 3% weight line in mid December at 19# 12oz, and now weighs 19#3. The pediatrician did bloodwork that has all been normal but we haven't gotten thyroid or celiac results yet. S had an abdominal x-ray because of his chronic and increasingly bad constipation but it showed normal amounts of stool in his colon (but lots of gas in the small intestine--doc mentioned it but didn't think it meant anything, and I don't know if it has any significance). But we had just done five days of glycerin laxative suppositories (so miserable--very hard stool, painful movements) on docs advice, so I'm not sure if the x-ray represents what his insides usually are like. And he hasn't had a bowel movement since the last suppository on Monday. So now doc is sending us back to Denver at a different clinic, this time the oral feeding clinic. But I'm just dreading it. I don't want to hear again that this is all my fault. If I get another list of foods and amounts I'm going to cry, because no matter how much I offer *I can't make him eat.* He is not grazing and not being coddled. He just doesn't eat. But I don't think the docs believe he might be sick because despite his weight he is happy, developmentally appropriate (advanced,even) and just... Looks sparkly. My well meaning friends all say,"maybe he's just small." But can 19 pounds at two be "just small?"
I think most awful is the underlying feeling that, even though I've done a food log and tried to be more scheduled and as far as I can tell it's not an unstructured environment causing this, that this is really all my fault somehow.
I'm sorry for leaving this here when the isn't any evidence this is IBD, but I would really appreciate this from people who won't necessarily say that maybe he's just small. Unless maybe he *is* just small, but I'd rather hear it from someone who knows of other possibilities.
L is still doing well. Her liver labs are still good and her IBD is staying quiet. She's had good liver numbers for 18 months now. Her doc originally mentioned trying to come off the aza after two years of normal liver labs, so I'll be asking if that is still expected when we have her next appointment, and if it is, how we are going to treat the IBD.
You may remember that about a year ago I had some worried about my youngest son, now two. He has had very slow growth and weight gain. Our pediatrician referred him to someone at children's Colorado and I never wrote about it here afterwards because I was so angry and embarrassed. The doc we saw told me I was a coddling mother. She said that because I have four kids there must be food always available and I was just letting S graze and keeping him from getting hungry. She also told me I had to stop nursing him and put him on a strict schedule. If I did these things, he would gain weight. She promised to do bloodwork, but she only ran a CBC.
Anyway, I was stunned. I'm not a rigid scheduler, so I was afraid maybe she was right and I just wasn't feeding him correctly. But I felt really let down. When I talked with our pediatric at home we agreed to monitor his weight here. I made a big effort to give him more structured feedings and he did gain a little more weight. (I didn't stop nursing, though, and still nurse him down for naps and bed). However, his weight has never really jumped up and every time he gets sick he loses a few ounces. Now we've had a run of colds and stomach viruses since Thanksgiving, and S has lost half a pound in the last month. To give this perspective, he was still far below the 3% weight line in mid December at 19# 12oz, and now weighs 19#3. The pediatrician did bloodwork that has all been normal but we haven't gotten thyroid or celiac results yet. S had an abdominal x-ray because of his chronic and increasingly bad constipation but it showed normal amounts of stool in his colon (but lots of gas in the small intestine--doc mentioned it but didn't think it meant anything, and I don't know if it has any significance). But we had just done five days of glycerin laxative suppositories (so miserable--very hard stool, painful movements) on docs advice, so I'm not sure if the x-ray represents what his insides usually are like. And he hasn't had a bowel movement since the last suppository on Monday. So now doc is sending us back to Denver at a different clinic, this time the oral feeding clinic. But I'm just dreading it. I don't want to hear again that this is all my fault. If I get another list of foods and amounts I'm going to cry, because no matter how much I offer *I can't make him eat.* He is not grazing and not being coddled. He just doesn't eat. But I don't think the docs believe he might be sick because despite his weight he is happy, developmentally appropriate (advanced,even) and just... Looks sparkly. My well meaning friends all say,"maybe he's just small." But can 19 pounds at two be "just small?"
I think most awful is the underlying feeling that, even though I've done a food log and tried to be more scheduled and as far as I can tell it's not an unstructured environment causing this, that this is really all my fault somehow.
I'm sorry for leaving this here when the isn't any evidence this is IBD, but I would really appreciate this from people who won't necessarily say that maybe he's just small. Unless maybe he *is* just small, but I'd rather hear it from someone who knows of other possibilities.
