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Post by antonia on Feb 6, 2016 9:52:47 GMT -5
How exactly is this fasting test done and what do they monitor for? None of our doctors have ever mentioned that we could run a test such as this. Without sufficient evidence (in the form of labs) I doubt that they will. Symptoms or symptom resolution is not enough. Maybe it is different in Canada (I hope) but in the US that's the way it is. There must be some kind of "proof" showing that it is necessary.
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Post by lucky on Feb 6, 2016 17:10:50 GMT -5
Antonia,
Basically, an in-hospital "Fasting test" is one that strategically tests how the body fairs under fasting conditions.
While the test is conducted, blood is drawn in intervals and analyzed for not only BS (blood sugar) numbers, but even more importantly, metabolic irregularities.
Here's how I remember my son's:
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Information was given beforehand for overnight fasting protocol prior to the next day's test. The test is conducted on an empty stomach.
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For us, Hospital admitting was at 8:30am. Our son was older, so perhaps your time might be different.
Actually, because your daughter is much younger, she may need to be admitted the night before to monitor how well she fasts before the actual test. For safety.
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When testing formally started, our son was put on an IV drip. This is used for safety, hydration, and blood data collection.
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Urine and blood was evaluated during this test. I think blood pressure etc was also monitored.
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Blood was taken every 20-30(?) min for several hours.
6./
With each blood sample that was collected, a drop was reserved and tested with a blood glucose monitor (for a quick BS #), and the rest was sent to the hospital lab for in-depth metabolic analysis.
But each lab analysis takes time (about 30min+) to get back, so that's why the Hospital's blood glucose monitor was also used. It gave immediate BS #'s in the interim.
*Not knowing if we were expected to bring our BS monitor, we brought ours to the test too. Obviously, the Hospital had their own, but in doing this, we found that ours was just as accurate as the Hospital's lab.
So in the end, it was very comforting to know that the blood glucose readings we were taking at home all along were extremely accurate.
7./
At any point if there is a decline in health, the test is halted. And in the event of BS dropping too much, intervening meds are immediately given intravenously through the IV.
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If nothing unusual happens with BS by the time the test is done, food is given. The patient is then discharged when BS rises enough (and stabilizes) to a safe/healthy standard.
Formal lab results are given later if nothing pronounced happens during the test.
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If something radical happens, the test will be short. Safe and controlled still, but short.
*They don't need a drastic decline in those quick BS readings (and general monitoring), just different than normal.
*The full metabolic testing through the lab (for each blood sample taken throughout the test) will later give all the valuable info needed by specialists.
10./
In our case, we were there from 8:30am-3:30pm. It was a long day so try to prepare for that, too.
Knowing beforehand that this could be a possibility, we brought some activities (Lego, iPad, movies)... but we're surprised to learn that our Children's Hospital also had books, movies, games (video games, regular games, dolls/Barbies) available.
So if your new specialist orders a "Fasting Test" perhaps be prepared either way, just in case...
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Post by antonia on Feb 7, 2016 23:20:16 GMT -5
Christopher, to answer your question, no I have never noticed labored or quick breathing with my daughter. She has complained on occasion that her heart races or that it's difficult to breath but I never see any physical indication of it. Even when we've been at the hospital for hypoglycemia her respiration has never been an issue. Her vitals always seem fine.
Also, something I have wondered might be associated with metabolism, is she has a recurring "nightmare" that someone is in her room and punches her in the chest. The sensation, whatever the cause, wakes her and scares her a lot.
She does run hot often. After playing, even in the winter, she will strip all her clothes off. Even turn on a fan of she can find one and stand in front of it. It takes her a while to cool down. And in the summer, forget about it, she hates the heat. She's outside more in the cool seasons than warmer ones.
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Post by colormist on Feb 8, 2016 9:15:58 GMT -5
But I'm not holding my breath. Since, other than the hypoglycemia, her labs show up normal and because we manage her diet so well at home there is nothing for doctors to "see". They basically don't believe there is anything metabolically wrong with her. Frustrating! I've noticed a similar response from doctors when I went in for my HFI genetic consultation "you look fine and your tests are normal" and when I went in about my gallbladder pain "you look fine and healthy". If I hadn't gone in to the ER when I was having gallbladder pains and a reaction to fructose, I doubt I would have had such a quick surgery. The problem was I was doing perfectly fine on a diet without fat and fructose (worst diet ever). It's amazing how much you can manage some conditions on diet alone. In the ER, when my liver levels were all over the place, they even seemed perplexed that I wasn't yellow. I still looked normal even though, according to their medical knowledge, with liver levels that high I should have been extremely yellow all over. Just another curiosity about HFI, I guess. If only the disease was a bit more visible to the naked eye, then maybe it would be easier to treat and more widely recognized. |
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Post by hfimomof3 on Jul 27, 2016 1:29:07 GMT -5
Given that her liver size is normal and her gene testing is normal, I can see why they sent you away, as disappointing as that is. It sounds like you've mostly solved the problem using dietary management. That is actually quite normal for HFI. Before the genetic tests, lots of kids with HFI just avoided sweet foods and did fine. I found a research paper somewhere that discusses diagnosing hypoglycemia and mentions HFI. I will try to find it. My guess about the constipation is that it's the lack of fiber in her diet. Not an unexpected problem with a restricted diet like ours. Can she eat beans? I'm going to second Colormist on skipping the cucumbers, they always make me feel a bit dodgy too. I can eat spinach, cilantro, kale, mushrooms (in moderation), scallions, water chestnuts, baby corn (the one in the can), radishes, and I can eat broccoli in small amounts also. I avoid lettuce. I can eat lemons and limes but some find them too sweet. For packaged foods I stick with things that list 1 to 2 grams per serving (I prefer 1 but it's hard to find foods that only report 1 gram per serving. Even pastas usually report 2 gm per serving). Kellogs Cornflakes, as an example, reports 3 gram per serving. When I eat it, I can feel the impact of the sugar on my metabolism. Can she eat wheat? I didn't see wheat items on your list. If she can eat white flour, King Arthur Bread has a eally rnice recipe for a bread that uses ZERO sugar. (You can just use any brand of white all purpose flour, it doesn't have to be King Arthur brand flour). blog.kingarthurflour.com/2016/01/01/no-knead-crusty-white-bread/If, despite sticking with her diet, she is still having metabolic abnormalities that show up when you go to the ER, such as lab-confirmed hypoglycemic episodes, then you will probably have to keep looking for the cause, I suspect. You may also have to look beyond dietary disorders. Maybe there is something else going on? |
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Post by hfimomof3 on Jul 27, 2016 1:34:04 GMT -5
Sorry, I forgot to mention you might also try quinoa, which is packed with nutrients. YOu cook it like white rice. It goes well with lentils. And if potatoes are difficult for her, a nice technique is to just scrub them well, peel off and KEEP the potato skins, fry up the potato skins with a little salt until they are somewhat crunchy, and you get most of the nutrients, with little of the sugar or starch.
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