Here I Am
DH got back late last night from a 5-day business trip. The kids and I really missed him. But overall it went pretty smoothly. The older girls are old enough to understand now that Daddy's going on a trip and when he'll be back. With starting new school activities and lots of get-togethers with friends, they did just fine. We talked to him on the phone almost every day, and that helped.
Baby E, though, didn't understand. She was especially disturbed that Daddy was gone. She kept asking, "Where my Daddy? Where Daddy go? What Daddy doing? Where my Daddy go?"
Monday was the first day in a month or two that I'd really felt normal, and like I had energy. It only lasted a day, though. I think one or more of my allergens must be high in the air around here, because I feel awful. I'm once again at the point where just trying to get myself dressed in the morning and meet the kids' basic needs seems like an almost insurmountable challenge.
I can exert myself, though, and at least for short periods nobody would even know how hard I'm pushing myself to appear normal. If I can at least lie down for a few minutes a couple of times a day I can manage. I'm way behind on communication and keeping up with friends, among other things, and I'm sorry about that. I'll try to catch up soon.
Baby E has had GI issues at some level on a pretty much daily basis. She has been napping less than half the time, and having a hard time going to sleep at night. Most of the time, though, she's still sleeping through the night and acting pretty normal other than being a bit fussy and short-fused, having GI symptoms and wanting to nurse a lot.
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It seems like every time we reach a new plateau, we become aware of symptoms that weren't really hitting the radar before. Now that she's not screaming inconsolably or having rashes very often, I'm able to pay closer attention to variations of things like bowel movements and excessive gas/burping/reflux.
Between that and her newfound ability to tell me when her stomach is hurting, I'm noticing issues more now that just didn't seem as big a deal before. Kind of like when you have a bad headache, and after it goes away you realize that you twisted your ankle and hadn't even noticed because the headache was so all-consuming. Once the headache is gone, all of a sudden the ankle seems to hurt worse.
She's having really watery diarrhea only a few times a week, but the rest of the time she fluctuates between constipation, very soft sort of frothy BMs, lots of undigested food, etc. She has a lot of gas and general discomfort, too. Things still just aren't really normal down there for her, for even 24 hours at a time. I would so like to be able to make her truly comfortable at least some of the time.
She's such a little trooper, though. Most of the time she's happy and energetic even when having severe diarrhea. It takes quite a lot of discomfort to make that sweet smile leave her little face.
We still haven't been able to figure out for sure if sucrose or fructose is the issue. I think we're going to need to get some more help from the GI specialist. I just need to get the time and energy to call and leave yet another message, and hope I get a call back this time.
At some point we are probably going to have to make decisions about what severity of symptoms justify which extreme of dietary changes. Even small amounts of blackberries cause very soft BMs full of undigested food, lots of gas, exacerbated reflux, and difficulty falling asleep. But they don't seem to make E severely miserable, and she begs pitifully for them if she sees them. So should we cut out blackberries or allow her to eat them occasionally anyway? We're going to have to start making those kinds of value judgements.
So far, it's pretty clear that most or all fruits cause symptoms, at least some vegetables cause problems, and either whole wheat or table sugar (or both) is an issue for her. But it still could be either fructose or sucrose that's the problem. I'm going to have to just feed her plain sugar to find out, I think. Even if plain table sugar causes symptoms, that could be either hereditary sucrase/isomaltase deficiency (since almost all fruits, grains and vegetables contain sucrose and/or maltose) or hereditary fructose intolerance (since HFI affects digestion of sucrose also). Or possibly something else. I hope the doctors will be willing to try to figure it out at some point instead of continually telling us that we just have to figure it out by trial and error and avoid feeding her foods that cause symptoms.
We can't really do an accurate trial without removing all fruits altogether, and I just don't know how to make that work.
The problem is that she cannot drink plain water without choking on it or having it end up in her lungs. She aspirates thin fluids. So we thicken her water. The only thickener we've found that she can tolerate and is willing to drink is tapioca starch. But even that she won't drink plain. So we add a small amount of orange juice to make it palatable.
Her reflux medicine is specially-compounded so we get the plain ranitidine powder with no additives. But since it's so bitter we mix it with about a teaspoon of black cherry juice. I don't know what else we would mix it with--I suppose we could mix it with her plain thickened water, but--wow, yuck. I'd hate to have to inflict that on her twice a day.
She is still nursing, but the doctor says that's not enough liquid to meet her needs, so she really needs to be drinking something besides breastmilk. When we've tried to switch her to thickened water with nothing added, she'll just go without drinking anything besides breastmilk for extended periods of time. Besides, even the tapioca starch itself contains fructose and sucrose. They even make high-fructose syrup out of it, similar to high fructose corn syrup.
I'm once again feeling overwhelmed and out of ideas when it comes to feeding this child.
And I'm still trying to figure out what's causing M&M's stomachaches, diarrhea and frequent leg pains, too. AJ gets symptoms too, but not nearly as frequently or as severe. I'm hoping that figuring out Baby E's issues (since her BMs, etc. are easier to monitor) will be the key for all of them. I'll definitely be trying everyone on the "safe" diet for a week or two once we figure out what Baby E can eat without causing symptoms. Meanwhile, I don't want to give M&M and AJ a complex by constantly asking them how they're feeling at the moment, so I just try to pay close attention when they volunteer information.
Baby E, though, didn't understand. She was especially disturbed that Daddy was gone. She kept asking, "Where my Daddy? Where Daddy go? What Daddy doing? Where my Daddy go?"
Monday was the first day in a month or two that I'd really felt normal, and like I had energy. It only lasted a day, though. I think one or more of my allergens must be high in the air around here, because I feel awful. I'm once again at the point where just trying to get myself dressed in the morning and meet the kids' basic needs seems like an almost insurmountable challenge.
I can exert myself, though, and at least for short periods nobody would even know how hard I'm pushing myself to appear normal. If I can at least lie down for a few minutes a couple of times a day I can manage. I'm way behind on communication and keeping up with friends, among other things, and I'm sorry about that. I'll try to catch up soon.
Baby E has had GI issues at some level on a pretty much daily basis. She has been napping less than half the time, and having a hard time going to sleep at night. Most of the time, though, she's still sleeping through the night and acting pretty normal other than being a bit fussy and short-fused, having GI symptoms and wanting to nurse a lot.
#############################
It seems like every time we reach a new plateau, we become aware of symptoms that weren't really hitting the radar before. Now that she's not screaming inconsolably or having rashes very often, I'm able to pay closer attention to variations of things like bowel movements and excessive gas/burping/reflux.
Between that and her newfound ability to tell me when her stomach is hurting, I'm noticing issues more now that just didn't seem as big a deal before. Kind of like when you have a bad headache, and after it goes away you realize that you twisted your ankle and hadn't even noticed because the headache was so all-consuming. Once the headache is gone, all of a sudden the ankle seems to hurt worse.
She's having really watery diarrhea only a few times a week, but the rest of the time she fluctuates between constipation, very soft sort of frothy BMs, lots of undigested food, etc. She has a lot of gas and general discomfort, too. Things still just aren't really normal down there for her, for even 24 hours at a time. I would so like to be able to make her truly comfortable at least some of the time.
She's such a little trooper, though. Most of the time she's happy and energetic even when having severe diarrhea. It takes quite a lot of discomfort to make that sweet smile leave her little face.
We still haven't been able to figure out for sure if sucrose or fructose is the issue. I think we're going to need to get some more help from the GI specialist. I just need to get the time and energy to call and leave yet another message, and hope I get a call back this time.
At some point we are probably going to have to make decisions about what severity of symptoms justify which extreme of dietary changes. Even small amounts of blackberries cause very soft BMs full of undigested food, lots of gas, exacerbated reflux, and difficulty falling asleep. But they don't seem to make E severely miserable, and she begs pitifully for them if she sees them. So should we cut out blackberries or allow her to eat them occasionally anyway? We're going to have to start making those kinds of value judgements.
So far, it's pretty clear that most or all fruits cause symptoms, at least some vegetables cause problems, and either whole wheat or table sugar (or both) is an issue for her. But it still could be either fructose or sucrose that's the problem. I'm going to have to just feed her plain sugar to find out, I think. Even if plain table sugar causes symptoms, that could be either hereditary sucrase/isomaltase deficiency (since almost all fruits, grains and vegetables contain sucrose and/or maltose) or hereditary fructose intolerance (since HFI affects digestion of sucrose also). Or possibly something else. I hope the doctors will be willing to try to figure it out at some point instead of continually telling us that we just have to figure it out by trial and error and avoid feeding her foods that cause symptoms.
We can't really do an accurate trial without removing all fruits altogether, and I just don't know how to make that work.
The problem is that she cannot drink plain water without choking on it or having it end up in her lungs. She aspirates thin fluids. So we thicken her water. The only thickener we've found that she can tolerate and is willing to drink is tapioca starch. But even that she won't drink plain. So we add a small amount of orange juice to make it palatable.
Her reflux medicine is specially-compounded so we get the plain ranitidine powder with no additives. But since it's so bitter we mix it with about a teaspoon of black cherry juice. I don't know what else we would mix it with--I suppose we could mix it with her plain thickened water, but--wow, yuck. I'd hate to have to inflict that on her twice a day.
She is still nursing, but the doctor says that's not enough liquid to meet her needs, so she really needs to be drinking something besides breastmilk. When we've tried to switch her to thickened water with nothing added, she'll just go without drinking anything besides breastmilk for extended periods of time. Besides, even the tapioca starch itself contains fructose and sucrose. They even make high-fructose syrup out of it, similar to high fructose corn syrup.
I'm once again feeling overwhelmed and out of ideas when it comes to feeding this child.
And I'm still trying to figure out what's causing M&M's stomachaches, diarrhea and frequent leg pains, too. AJ gets symptoms too, but not nearly as frequently or as severe. I'm hoping that figuring out Baby E's issues (since her BMs, etc. are easier to monitor) will be the key for all of them. I'll definitely be trying everyone on the "safe" diet for a week or two once we figure out what Baby E can eat without causing symptoms. Meanwhile, I don't want to give M&M and AJ a complex by constantly asking them how they're feeling at the moment, so I just try to pay close attention when they volunteer information.
Labels: health issues
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Posted by purple_kangaroo at 7:01 PM[Permanent link]
6 Comments:
I missed you. I hope that you can figure out what is really going on with E and M&M, and that you yourself feel better soon.
Hugs and lots of supportive thoughts
I'm so sorry to hear things are going off track again.
Some ideas, although you may have already investigated these:
For you, have you looked into having your adrenals tested? The fatigue you describe sounds an awful lot like adrenal fatigue.
For you and the girls, have you looked into mold or another irritant in your home? It seems like you and the girls, who are home more, have more frequent issues than hub.
Just some thoughts.
I hope everyone feels better soon.
Okay, so I'm sure you've already tested Baby E for this, but what about a pectin intolerance? I was just thinking about what fruits and veggies do/do not have high levels of pectin and blackberries were on the list of high-pectin foods. Just a thought.
PK - Didn't have time to read fully, and have been sporadic, but my latest blog post is about IgG allergies/Candida, etc that can attribute to issues like E's. This may be old hat info for you, but I thought especially the yeast link to autoimmune disorders (like FM/CFS) was compelling as well.
This is Katia
It's been a long time since I've been on I've always wondered what your responce was to my religion explanation in the Embracing the risk blog page and have just stop checking when I saw no responce. I've also been busy with my School work. Now I have some time off school and am visiting old blogs I haven't seen in a while.
I think the Yeast or candida think might have something to it. Once when my two middle children where little their diapers were nothing but runny and it didn't seem they digested well at all. So I went to an extreme. For a while I wouldn't let them have any white sugar, wheat of any kind white or otherwise, any processed foods, popcorn, strawberries or cows milk. My inlaws thought I was crazy but I had my kids on a diet of oatmeal, brown rice noodles, rice, veggies, fresh meats and fruits and nuts. It took a while and at first they couldn't tollorate many "cheets from the diet and I had to be strict or they would start having diareaha again. It took about a year before I become relaxed. Their systems finally cleaned themselves out and now when they have their cheets "which is more often then I like" they seem to do well with them. ONce and a while if the over do it they throw up or get runny bowels again. they can't eat too much candy and I still restrict their wheat and cows milk. I have them drink goats milk and the only bread we it is jack sprat which is made from mostly sprouted wheat.
Anyways I say this to show that it took a bit to figure out what was causing the problems and then it took time for their bodies to wash themselves out enough from all the foods their bodies struggled with.
It takes time for healing and everyone's different. I would say try to figure out a strict diet. I would take her off table sugur altogether. Have you tried agave. Honey might work too. You might try sprouting your wheat.
This is a difficult thing that's for sure. When life gets that tough I sometimes pray which I'm sure your doing. But I find many answers that way. I pray you will find an answer. Good luck.
Kathy
Thanks, Liz.
EH, yes I know that some of my issues are caused by dust mite and mold issues, which are exacerbated by the clutter in my home and the fact that our air ducts and filters need cleaning. I have had my adrenals checked, I think, along with iron levels, etc.
Genevieve, I hadn't thought about pectin. But I looked it up, and although I couldn't find anything about pectin intolerance, it seems to be a fructan-type thing--basically an indigestible chain of complicated sugars. Thanks for pointing me that direction.
Hamiam, I'll come by and check it out when I get a chance.
Hi, Katia! It's good to see you again. I haven't had much chance to do anything blog-related lately. After the discussion on ETR I got sick, and then we were gone on vacation, and by the time I got a chance to go back to the thread it looked like you hadn't been there for a while. Sorry about that. I'll try to get a chance to go over and catch up on it sometime in the next few days.
I'll answer your comments about sugar in my next post. Baby E has consumed an unusually small amount of sugar or refined/processed food products in her lifetime--partly because I like our family to eat healthily, but largely because of her corn issue which prevents her from eating most things that are bleached, enriched, processed or refined.
Katia and Hamiam, I am planning to call the naturopath today to ask about differentiating between a yeast issue and a sugar malabsorption issue. But my feeling is that any yeast issue she has had would be secondary to the sugar malabsorption issue. Her symptoms and the positive reducing substances test don't seem to fit with a primary yeast issue.
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