JUST TESTED

[sarah]

My daughter is 5.5 and has been diagnosed with Fructose malabsorption via 2 breath tests. She gets very very irritable with ingestion of ANY Sugar, she then may or may not get loose stools/constipation, but she always gets leg cramps and excessive peeing of her pants. The geneticist just did the HFI blood test. Results wont be for a while. Her urine labs showed a small amount of protein in her urine. This, we are re-doing next week. Could this be a part of the picture?
My daughter is g-tube fed 75% due to all her food intolerance, including dairy and corn. I would love to just have a SOLID answer as to why she is this way. Can you tell me your childrens symptoms? Ages at diagnosis? Is it possible to have a mild form of HFI? My daughter isnt as sick as the websites say she should be, if she has HFI.
Also, do you know if the formula she gets.. NEOCATE JR has sugars? I see it has over 55% corn syrup solids. I was told by the makers this was corn, but no protein, but still a sugar. My daughter reacts to corn.
What formula, if kids cant tolerate milk, is best for kids with HFI?? Just curious.

THANKS!

[charlie]

Hi Sarah,
Yes, this sounds a very familiar story. My daughter megs can yo yo for weeks with mood swings and energy levels after having any frucose, even the smallest amount. She also starts peeing for england, the protein may be a sign of kidney involvement as it can affect the kidneys. Megs also gets leg cramps, sleeping problems and black outs.

Re what she is fed and diagnosis so far, is she definately lactose intolerant, you may find that fructose is the problem and once that is sorted out she may be able to tolerate other things. It would certainly be great if you can get her onto solid foods, unfortunately HFI and FM are nearly always a final resort result as so little are known about it. Obviously none of us are doctors on here, we are just folk going through the same thing as you so you must run changes through your doctors first.

If the sufferer is very intolerant of fructose then the safest diet to start is absolutely NO fruit or vegetable, sugars, sweeteners and yes corn too. Don't let the dietitians at this stage say such and such is OK, we have been told bananas are ok once, and tomatoes??

this is what worked for us, megs is now 7 1/2, she was diagnosed at 5 but first queried at 2. she lives on plain good quality meat, watch anything processed or cheap cuts as they may be injected with sugar water to plump them up. she likes plain fish,
old potatoes either mashed, chips, baked or roast.
Rice noodles,
Pasta
Ready brek or porridge
White rice is her favourite with anything and this is your best starting point. Whenever she is having a reaction I put her back on white rice boiled in some homemade chicken stock and diced chicken. make it quite moist and she loves it. I am very lucky that she will eat the same thing over and over if she likes it.
It is a very limited diet but manageable once you get used to it.

Don't know on neocate but if it has corn in it may have fructose element in fructans, Meg can't tolerate corn. Maybe a sugar free rice milk. Or oat milk. Or goats if she is not lactose allergic.

If you join the board, its free you can use the message bit, send me a message with your email address and I'll email you the british diet advice. Post some more info and visit the misscellanious section on how were you diagnosed as well, you will find this board an absolute sanity saver, even if it is malabsorbtion not HFI the treatment is pretty similar at your stage. Let us know where in the world you are from too as some foods vary as safe depending on where you are.

good luck.
Charlie

[sarah]

Yes, please do email me the food list. Would love a diet to follow. She currently eats the following on a daily basis:

natural PB on 1 slice bread, it has wheat, but no HFCS.
National Hebrew hot dogs with a tiny amount of HFCS free ketchup
plain potatoe chips, plain hash browns. I dont even use oils except sunflower.
PLAIN meats.. chicken, beef, pork and turkey
RIce dream rice milk (about 12 oz a day she drinks)
I do give her on occasion mcdonalds fries and 2 chicken nuggets. Not sure if this is bad or not. Id say its a treat once a week.
SHe also gets 20oz of neocate.

Is CORN a NO NO for HFI??
I live in WI!

[e-mail]

[jejns1]

Hi,

We have found that a lot of store bought breads have some kind of sugar. Some we found at our local grocery store listed dextrose as the sugar, but our kids still reacted to it. Watch out for malted barley flour as an ingredient, this seems to be the culprit. We now bake our own bread, hubby makes great french bread, but watch flours for malted barley flour as an ingredient. We use Hudson Cream enriched, unbleached flour and it works great, no reactions. We use powdered dextrose for baking as a sugar substitute. It is available at a local beer/wine brewing store (Kansas City area).
This may be worth checking out in your area.
Janice

[Tammy]

Hi
Yes, there are varying degrees of HFI. It depends if the liver is producing any of the enzyme or none at all. Regina's is a very small amount, therefore allowing her a very limited small amount of fructose. I'm talking a spoonful of broccoli once a week, that kind of thing.

As for her current diet, I would double check the bread. If it says corn syrup, chances are it is still HFCS. The bakery industry doesn't always discern between the two. There are some breads out there that are safe, but mostly they are from the deli section of the grocery stores. Most pre-packaged ones have something. Matthews White Bread is the exception that I've heard of so far. That is around the Boston area.

The only other thing that Regina could not have would be the ketchup. Even though it is HFCS free, it's still made from tomatoes. Tomato, along with all fruits and most vegetables, are not allowed on a HFI diet.

There are many diet out there that contradict each other, but most of use basically use the diet found on Boston U. website. You can find it here:
www.bu.edu/aldolase/HFI/treatment/Diets.html
Along with a table of sugars:
www.bu.edu/aldolase/HFI/treatment/sugar_table.htm

Now this is HFI. Fructose malabsorption is different. I would stick to an HFI diet until they ruled it out.

I'm not familiar with the neocate, so sorry, I'm not any help with that.