Tests to request

[rachael]

The metabolic doc orders a metabolic panel for my son's blood draws, but are there any other tests that you would recommend that I request, i.e., for certain vitamin deficiencies? We have not been regular with the NanoVM because he will yell "no vitamins!" every time we pull out the yogurt now and we haven't found a way to get him to eat them. We may also try polyvisol on the recommendation of his dietician, but I believe that is for little babies so it's probably going to be a big, nasty tasting, dose.

[antonia]

My understanding from reading posts on this forum and my own googling " research " is that vitamin C is a big one since you really can only get that from fruit and vegetable sources. Since vitamin C is needed for iron absorption, iron can be deficient too. Calcium may play a role in iron deficiency as well. If your son eats a lot of dairy or drinks a lot of milk the calcium could be inhibiting iron absorption. So if he's taking supplements regularly and still iron deficient calcium could be the culprit.

I've gotten the most help from our naturopathic doctor in testing for vitamin and mineral deficiencies and finding sugar free supplements. Conventional doctors have shown very little knowledge in either in my experience. Our ND works with us around insurance issues too. She tells us what tests to run, then our pediatrician orders them, then we forward the results back to her. This way our insurance covers them. She mentioned a specific kind of test for the iron where you look at iron levels within the cells as opposed to free flowing in the blood. A more accurate way to test for iron deficiency.

For the vitamin C you can buy pure vitamin C powder from any health store pretty much. You only need the teeniest most tiniest pinch of it to meet daily values for children. Vitamin C is not heat stable though so you need to mix it in something cold. My daughter will drink it in plain water. Unsweetened Koolaid is also pretty much pure vitamin C with added flavors and colors of course. The cherry and grape flavors are still made with artificial flavors and colors, the last time I looked, nothing natural that might contain fructose. Not that I'm advocating the artificial stuff, but if he really won't take the vitamin powders in water or yogurt, this might be a good mixer for him to get them down until he's old enough to swallow pills. My daughter likes it without added dextrose.

[antonia]

Also they have these vitamin skin patches now you could look into. I've never researched the inactive ingredients though.

[jenn123]

My kid loves polyvisol. She took it until she was about six or so . She probably would have drank it if I would havehave allowed her. lol

[rachael]

Antonia:that is interesting about the patches, I'll have to look into them. How did you find your naturopathic doctor?

Jenn: That gives me hope that it might be worth trying! My son does not like anything sweet so maybe I'll luck out, too? Do you remember how big the dose was in the end?

[jenn123]

I think I just allowed her one dropper as she got older maybe two. I looked at weight / recommended amount and did less because I wanted to be sure to be careful.

[jenn123]

we check for vitamin d, vitamin c regularly.
They check her phosphate and kidney function .

[rachael]

Jenn, I was just noticing that the polyvisol I picked up (the one with iron) is fruit flavored. The dietician says that it is HFI safe, but I'm wondering if I got the wrong kind (and, they don't have all that much experience with this condition, so I often come here for confirmation on things). What kind did you use?
Kidney function is definitely checked, but I'm not sure if they do phosphate and I don't think they do Vitamins D or C. I'll ask about those. Thanks!

[jenn123]

I see that the ingredients in the poly vi sol say natural and artificial flavoring as well as caramel coloring. It was a few years ago that we used it, and I know that it had the coloring , but maybe the flavoring was all artificial ? The formula may be slightly different. My daughter has always been very sensitive to taste, rejecting sugars, especially as a little one.
Look at the kirkman children's multi vitamin in a capsule. Maybe break open the capsule and sprinkle on food With amount that is appropriate for his weight ? It is a much more condensed vitamin than some of the others.

[antonia]

Our ND worked with our GI doctor who was very knowledgeable in FM/Fructose Malabsorption (what we originally thought my daughter suffered from). We no longer have the need to see a GI, but we still see the ND. So while you're unlikely to find NDs knowledgeable in HFI, if you can find one that treats patients for FM they'll probably be more able and willing to help you, as well as understand your HFI needs. I've dealt with many conventional doctors that don't even BELIEVE in fructose intolerance or food intolerances of any kind. And I have friends who see NDs that have helped them track down other food intolerances related to a variety of ailments from GI distress to migraines. So, in general, they just seem much more knowledgeable about nutrition, food intolerance and how food affects overall health than your average conventional doctor.

[antonia]

I was thinking also about the Koolaid. I have made my daughter jello by following the directions on the back of plain gelatin packets and replacing juice with unsweetened koolaid. If you could mix your vitamin powder in the koolaid and then make jello with it maybe it would slide down his throat fast enough that there would be no vitamin aftertaste?

Just a thought.

[rachael]

What is an ND? Nurse Dietician?

That is a really interesting idea about the Jello! Part of why they figured out
That my son has HFI was because he wouldn't eat anything sweet so I'm hesitant to try much of the sugarless drink mixes until he's older and can understand why he needs to eat it but you are right, if he doesn't have to chew it, it might go down easy!

Jenn:I'll look for the Kirkman vitamins, thanks!

[ukbill]

Extract from Wikipedia
"Maltodextrin can be enzymatically derived from any starch. In the US, this starch is usually corn; in Europe, it is commonly wheat. Some individuals suffering from gluten-related disorders may be concerned by the presence of wheat derived maltodextrin but it is highly unlikely to contain significant (20 mg/kg or 20ppm) amounts of gluten. Maltodextrin derived from wheat is exempt from labeling, as set out in Annex II of EC Directive No 1169/2011.[3] However, wheat-derived maltodextrin is not exempt from allergen declaration in the United States per FALCPA,[4] and its effect on a voluntary gluten-free claim must be evaluated on a case-by-case basis per the applicable US FDA policy."

This is the main ingredient of "unsweetened" Koolaid

Corn (better known as sweet corn) has a 4% "sugar" content this may or may not be removed from the starch before its converted to Maltodextrin. We know its not removed in making Glucose so there is a possibility that the Maltodextrin will be contaminated with between 2% and 4% Fructose depending on what the "sugar" is in whole corn.

[antonia]

Sorry Rachael, by ND I meant Naturopathic Doctor. Also, the Koolaid is not sweet. The old fashioned, unsweetened packets don't even contain sugar substitutes. You are suppose to add sugar when you mix them with water. We just don't add it, and it's a very tart (from the citric acid) flavored and colored water basically.

Ukbill, on the maltodextrin I hear you. I think you take a risk anytime you use a processed food of any type that there could be fructose contamination. However, every flavor of Koolaid (in the US) reads differently and the main ingredient in the US is citric acid not maltodextrin. Not sure why they are formulated differently between the US and U.K. markets but so be it. The cherry flavor here is the most safe, it does not contain maltodextrin. The grape flavor does contain maltodextrin, but not much, given the weight of the cherry packet is 3.6g and the weight of the grape is 3.9g I'm making that assumption. I also make the assumption that it's derived from corn because this is the cheapest form for manufacturers in the US to use. I consider corn starch safe because the more processed corn is the more fructose is removed from it, just as with all the other starches such as potato, wheat, tapioca, etc. Also, maltodextrin is listed as safe on Dr. Tolan's HFI sugar list. Given all this as well as the fact that one packet of Koolaid is diluted into 2 quarts of water, I don't feel one serving is much of a risk. But everyone should weigh the risks vs the benefits for themselves. If it were my child, I would be concerned if they weren't getting any vitamin and mineral supplementation, so I would take the risk on using something artificially flavored, such as Koolaid, in order to get those supplements down. The cherry certainly does seem the safest option here in the US.

[rysmom14]

Hey Rachael,

My son has been taking the poli vi sol for a couple months now because he has severe anemia. The formulary has recently changed, in the last couple months, and they took out the caramel coloring and artificial sweeteners. It does still contain the natural sweeteners. its hard to find the new formula on the shelves so we order our from Walmart. just check to make sure the box says no artificial sweeteners. My son takes 1 ML a day. we just give it to him as it. he takes it in one shot and swallows it and then drinks milk and has a couple crackers. its not his favorite, but we he does really well.

I was leery when the other formula had the caramel coloring and the artificial sweeteners. I still don't like the natural flavoring, but I am hoping that this isn't a forever thing. When he goes for his next round of blood they are going to check his iron again .

[antonia]

Still thinking about the jello, if you don't want to use Koolaid, you could try making panna cotta, which is basically a milk based jello-without added sugar of course and maybe a HFI safe flavoring such as cinnamon. Maybe this would be enough to mask the vitamin taste as well. If you google milk jello or panna cotta you will find all kinds of recipes that you could potentially modify to make your "vitamin jello",

[ukbill]

antonia yes corn starch as sold in shops is safe because it's processed and the germ of the corn grain is removed (thats where the sugars reside) the process for making glucose and I would assume Maltodextrin uses the whole corn nib.

This they soak them in hot water for 48 to 72 odd hours before mushing them up and adding the enzyme.

For this reason alone Glucose is not safe.

Other manufacturing methods (i.e for solid Glucose) result in a 100% "pure" glucose that can according to the patents, can contain up to 40% "other sugars"

The purest medical grade Glucose is manufactured in Japan where they use rice as the base starch which has a lower base level of sugars.

If it was made from pure refined cornflour, wheat or Rice flour then the result would be far safer for us.

We can buy amylase enzyme which is used in home and industrial brewing to convert our own starches into glucose if we really really need.

[antonia]

Not 100% sure, but I'm guessing in the US corn syrup is not made from whole corn. It's such a large commodity here, large manufacturers will separate the grain into its different parts to produce different products from them. But I do believe there is cross contamination with fructose throughout the manufacturing process. Probably since we started mass producing HFCS this contamination increased exponentially. And I'm guessing levels of contamination will vary greatly from manufacturer to manufacturer, facility to facility, batch to batch and so on.

Also, in the US, corn syrup (which inherently should be glucose syrup) can legally have a certain percentage of HFCS added to it, yet it will still be called corn syrup and labeled as "corn syrup" in the food product it's used in. (However, if you buy a bottle of corn syrup at the retail level, the ingredient list should show you if HFCS has been added to it.)  I'm hopeful, since maltodextrin's primary use is not as a sweetener (I don't think it's even sweet), that there's nothing wonky like this going on with it.

I spent a short time working in the technical department of a large food manufacturer and learned a bit about US labeling laws. And I do mean just a wee bit, you could spend your whole life learning about these laws. However, I know for certain when you read the labels of processed foods, if they contain ingredients that have a list of ingredients within themselves, manufacturers do not have to list out each ingredient separately if it doesn't comprise a percentage of the finished product deemed as "significant". For example, if a food product contains a small amount of vegetable oil with added preservatives to keep it stable, you won't see those preservatives on the finished food label, you will only see "vegetable oil" listed. So I can understand why processed foods that read clean on the label will still give HFIers trouble.

[rachael]

Thanks all! Just wanted to update that we've been using the polyvisol for 3 days and my son doesn't seem to be having a reaction. Maybe it's psychosomatic, but my husband thinks that our son seems more alert and his cheeks seem rosier. He doesn't like it, but it is certainly easier than trying to get him to take a full serving of NanoVM.

[Stefanie (Ziba)]

Just had regular labs done and Remy's creatinine is elevated (1.4). This is the first time it has ever been elevated (his BUN/creatinine ration was high a few months ago and now that is normal).

These kids are on a very high protein/fat diet. I wonder if that can strain the kidneys?

Have your little ones had high creatinine?