Medical Issues

[lukesmom]

My son Luke was finally diagnosed HFI last October, and just turned 5 years old. We suspected HFI since he was nearly 3. Have two big questions:

He is really constipated. Any suggestions for safe meds- do you guys use a particular laxative?

Also, his liver is still pretty swollen after nine months- in fact, it has not changed at all and the doc is worried about damage (as are we). He goes for ultrasound next week. Anyone else have experience with the liver, it being swollen, the long term issues...?

[meaniejean]

Hi there, lukesmom. Welcome to the board.

My youngest son is very constipated as well. He has been on Miralax for over a year now and it works very well. We put in with his first bottle of the day and he drinks it right up. It is odorless and tasteless (or so they say) and it does not contain any fructose.

My older son (he's 4) uses Miralax on occasion, though he used it daily for awhile. Now he seems to be okay without it as long as he takes his daily RDA of magnesium via a supplement. I also take a magnesium tablet, especially if I happen to get a little bit of fructose by accident.

I don't know much about the liver swelling except that it tends to disappear over time. Is there any chance at all that Luke is getting a small amount of fructose from something? I am guessing probably not, but it never hurts to go back over every little detail again. We have been burned here by too much cinnamon multiple days in a row - just added up to enough to bug the boys.

I'd love to hear more about you and Luke when you get some time.

I hope that Luke's liver recovers soon. Good luck at the ultrasound.

All the best,
Sandra

[Tammy]

HI Lukesmom
When I read your post, the first question that came to mind was just like Sandra asked. Any chance your missing something containing fructose? It's so sneaky that you find it in the darndest places. We've just recently found it in fresh beef. Who would even think to check pure, fresh beef? Not me. Thank goodness Regina was staying at my paranoid cousins house. She checked it.

When Regina was young, she also had an enlarged liver. That was the real reason they kept looking for an answer. The liver did heal itself after the diet, but I'm sorry to say that this old brain just can't remember how long it took. I'm thinking quite some time.

If the doctors are thinking they should be seeing things differently by now, then I'd go back and re-check everything that goes into Lukes mouth. I'm sure you've done this several times by now, so my next step would be to double check with anyone else who may be around. School? Grandparents? Siblings? Friends? Sitter? Lukes Friends? There may be some well-meaning person thinking "just this little won't hurt".

And of course if there's anything you just aren't sure about, there are a lot of nice people here that are willing to give their opinion on questionable foods.
Tammy

[lukesmom]

I have tried to be very very vigilant, especially for the first six months- I have been a longtime reader of this group and of course have done so much reading and research. Since the diagnosis Luke no longer vomits and his stool is no longer loose and nasty- he doesn't "crash and burn" like he did before, and he has more energy and is more active.

Thanks for the Miralax suggestion- we have used this, but I am always nervous about meds, not just with the HFI but because of his liver issues. He is also on daily Singulair and occasional Proventil for asthma.

During this summer we have tried some of the "questionable" things. It's possible that the liver went down and now is large again, but..? Some of the questionable things we have tried (mind you, once a week at most) are popcorn, sugar free Popsicles (aspartame), xylitol gum, corn tortillas, natural peanuts and other nuts.

He is a carb-oholic though. He OFTEN eats pasta, oatmeal, sugar free bread from a local bakery (it's safe!), bisquick waffles/ pancakes, etc..

I look forward to your thoughts-

Luke's mom, Amy

[Tammy]

Hi Amy,
It sounds as though you're doing a thorough job. Reading is the key.
Maybe its a case of it's just taking a little longer for the liver to heal. I'm thinking it was a lot longer for Regina.

Your "questionable" things are tolerated by Regina just fine. She is by no means a text-book case, but she's all I have to judge by. She also is a carb-o-holic. Everyday. Pasta is a big part of her diet, and safe bread is several times daily.

Now oatmeal is another matter for her. Once - sometimes twice - a week at most is all she can do. Maybe it's the kind I give her, though?

So lets ask the rest of the board - How does everyone handle oatmeal?

[colormist]

I like oatmeal. I eat the quick oats and the steel cut oats. It gets a little boring after a while (I don't have the same addiction to oats as I do Shredded Wheat).

[meaniejean]

Amy,

We do not do well with corn products, oatmeal or nuts. I should stress, however, that we do not have an HFI diagnosis right now. We can do a little bit of the degerminated corn meal, but not much. In the past I have done better with the cheapo-deapo plain instant oatmeal than the higher quality, all-natural stuff. I also don't tolerate much popcorn.

We are all carbo-holics here too!!!

One more thing - we are sensitive to barley malt that is used in a lot of flours. Is this in any of the products you use? I had noticed awhile ago that if a product listed barley malt, but not yeast, then we would react to it. I'm guessing this is because the yeast usually eats up a good portion of the sugars from the barley malt.

Again, we don't know we are HFI, just extremely sensitive to fructose.

Oh, and I have been assured repeatedly that the Miralax does not even enter the blood stream, so it would not have an effect on the liver. Apparently it cannot be absorbed by the body. I know what you mean about the drugs - I hate giving the Miralax, but it works and works well.

All the best,
Sandra

[meaniejean]

I just took a look on nutritiondata - looks like plain instant oatmeal has about 600-800 mg sucrose in it - so the fructose load would be about 300-400 mg per cup.

On a 40mg/kg diet, my kids need to stay below about 600 mg per day - including all the incidental fructose from white wheat flour, small amounts of spices here and there, eggs, etc. Generally I like to stay as far below that number as possible.

Maybe if I only used a half packet we might be okay. I might try this soon as the kids are a little sick of rice puffs ...

[charlie]

Hi Amy, nice to meet you.
We have been told no nuts as they contain fructose and that includes peanut products.
You have to watch products a bit depending where you live as some products have different names in different countries and they may sneak things in. As Tammy has said they snuck some in beef, in England there is a common habit to produce cheap meats of injecting the meat with sugar or dextrose in water especially pork and chicken so I always buy farm sourced stuff now.
You'll be amazed at what it is hidden in. As Sandra has said, let us know your story and where you are from, you'll be amazed how similar it is to the rest of us with the trials and tribulations.
Fred, just an idea, we have had alot of "newbies" recently, would there be a way of adding a page or link so people can put there diagnostic story if they wanted to save trolling back through the archives or doing repeats, it may also start to show some startling similarities that could be used for research at some stage. Just a thought
Charlie

[julienc]

That thread could be good - I'll add my diagnosis story which should bump it to the top.

[colormist]

I think you can adjust that thread's status so that it always appears at the top. (I've done some forum admining in my days )

Un-burying it would be best. I don't think it needs it's own section.

[julienc]

Aug 20, 2009 8:23:27 GMT -5 colormist said:

I think you can adjust that thread's status so that it always appears at the top. (I've done some forum admining in my days )

Un-burying it would be best. I don't think it needs it's own section.

Ah yes, the "sticky" thread! This is a good idea.