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Post by rysmom14 on Nov 7, 2015 8:37:36 GMT -5
at my son's last appointment with the Genetic Dr. she is sending him for a new type of ultrasound that will check for Fibrosis in the liver.
It is called an abdomen US Limited scan (Elastography)
We are going for a baseline test next month and then we can get the scans in intervals to check for changes in the condition of his liver. This is just another tool that is going to help us manage my son's HFI.
Currently, we meet with the D. every 6 months, I don’t find it to be all that helpful since he is stable. The metabolic dietician is not helpful at all so we have been on our own for food. we do get blood tests every 6 months, and while they look good, they are not able to really show the whole picture. The Dr. was talking about the 2 types of exposure, chronic and acute. I am not as worried about the acute since i have a good idea of what food are do not eat , but I am always wary about the chronic exposure. The dietician, which I already said is no help, isn’t able to tell me how often he can eat certain foods. Like if canned green beans are "safe" are they only safe a few times a week since there fructose is low enough that he can tolerate? What if he ate those green beans 2 times a day, every day for 2 weeks. I would think that is too much and he would start to have a buildup of fructose and problems would start to occur.
When I gave that same example to the Dr. she said that if that had happened and he had some chronic build up, but stopped eating it the green beans for a while before the blood tests, the blood results may show nothing out of the ordinary. The scan on the other hand may be able to show some small level of damage, and then we could go back to see if anything was out of the ordinary.
we are excited about this new way to help make sure he is healthy. Hope the information is able to help others too!
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Post by colormist on Nov 10, 2015 9:26:26 GMT -5
Interesting! I am curious about how often we should eat veggies, too. I notice if I have a portion size of veggies (like spinach or green beans) once a day for an entire week, that I start to show more signs toward the end of the week. Not only do we have to be concerned about our livers, but the kidneys do play a vital role in clearing things up. I often wonder if I'm causing damage to my kidneys as the kidney pain can be quite intolerable after an accidental ingestion of fructose.
I'd be interested in hearing the results if you don't mind sharing!
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Post by rysmom14 on Nov 10, 2015 13:50:43 GMT -5
I will for sure! we will go for a baseline read next month and then i'm not sure when the first comparison test will be, but I will be sure to post. I wonder sometimes if any veggie are really safe, or is it just the fact that the quanity is low enough that it is not a problem for the liver. Lord knows we need to protect those organs! From what i understand the Kidneys do play a big part at filtering the sugar so any buildup would cause them to work in a way they werent made, just to keep the body as healthy as they can. I'm sure the kidneys arent happy about the extra work, but I dont know what happens to them damage wise. I think I am going to be leery about to many veggies.
thats interesting how only after 1 serving a day for a week you notice changes. This is something i would never know being that Ryan is so little and cant talk. am i bet his tolerance would be even less since he is a baby vs a grown adult. so many questions....
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Post by heatherp on Nov 11, 2015 2:13:10 GMT -5
This sounds really interesting and like something we should look into. Also interesting....we track Wyatt's blood sugar one hour post prandial often enough to know a "range" of normal for him, and we see lower blood sugars consistently if he is eating something that is "chronically" exposing him. Of course, figuring out what that food is is the next move in the "game" and, since we are now less calculated about what he eats and when (ie his "safe" diet is bigger and we aren't doing a one week trial of any new food but rather going by ingredients more so to determine safety) it sometimes takes us a bit to figure out the food that is causing the problem.
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Post by rysmom14 on Nov 12, 2015 7:51:16 GMT -5
I was happy to have another tool to track things. Our genetic Dr. doesn’t seem all that concerned with the blood sugar thing, except at night, so it's been a new process to think about trying to look at a change in sugar levels to know if he is overloaded on sugar or not. When we were at our appointment and told her i wanted a new dietician since the one we had doesn’t know anything she was shocked. when I explained my reasoning she asked if we had specific questions that maybe she could help with. My main thing has been about how much is too much and also what other foods can be options for him. I explained store bought chicken broth not being an option and the dr. didn’t seems to understand even when I told her that there was carrot and onion in there. she said " i don’t see why that would be a problem, he just needs to stay away from fructose" so while I think the Genetic Dr. knows a lot of things, and i was glad to have them as part of our team when he was in the hospital, there is a disconnect for sure on the food side.
So I am hoping to become my own expert in the HFI field and maybe this ultrasounds will be another puzzle piece to help. We try to look at the ingrediants to see if they are safe or not. and have never goen to blood sugar route. I also go by what Ryan will eat or not. I notice that he likes greenbeans, but if he eats a ot of them the next time I offer then to him he may not eat that many. sometimes i try a new food that looks good to me, but he wont eat it, so i dont push it. if he just doesent like it, im not sure, but I kinda take my lead from him.
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Post by colormist on Nov 12, 2015 9:39:01 GMT -5
It is so hard to get people to understand the breadth of the issue with HFI. I mean, things like carrots and onions they really should comprehend (can't believe your doctor was all like "I don't see an issue with that), but then to add on stuff like "natural flavor" or "brine" or "broth" is a whole new level of frustration. I've got my husband fairly well trained (at least he looks for the sugars listed in the nutritional information and reads the ingredients when the nutritional breakdown isn't available), but even I can't trust him implicitly.
It's a really difficult and lengthy list of sugars to memorize and then you have to remember all the other things (like carrots, tomatoes, onions, and natural flavors) that can also sneak in there and complicate things.
I love that you are able to evaluate your dietitian and say to your doctor "no, they don't know what they're talking about". But then to have your doctor also not know what foods are safe is also frustrating. It's so hard to manage this condition successfully even when you have the condition, but to be a parent of a child with this condition is a whole 'nother level of complication. You are doing an amazing job!
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