No longer HFI?

[alisha1234]

Hello everyone,

I just received a call from the liver specialists' office. The nurse said after the specialist spoke with many other dr's and looking through my daughter's health and history, they want her off the HFI diet. They want a heart ech done, they are thinking it could be something to do with the heart that's causing elevated liver enzymes.

Now I'm nervous. I'm nervous to put her back on a normal diet, becaue what if she does have HFI? I don't know how the liver biopsy couldn't rule this out or why the dr's didnt look for this mutation during the biopsy? I was told to put her back on a normal diet and see how she does. Finger's crossed that we find answers soon or maybe this is all just something viral and it will go away...a mother never loses hope

[Debra]

I would go with the doctor's recommendations as they are looking at a much bigger range of indicators. However, I would ask them to do a liver enzyme test now when she is on the HFI diet and then perform a second test a few days after she is taken off the HFI diet. That way you may have a clue if there is any difference in her elevated liver enzymes based on her diet. There is always a possibility of more than one problem

[alisha1234]

Hi Debra,

We are still having her enzymes checked once a week. She was on the HFI diet for 5 weeks and her enzymes were still up and down even going up to 1000 2 weeks ago when we decided to do the liver biopsy. I know that some ppl here said it could take up to 6months for the liver enymzes to go back to normal but I guess we'll go with the Dr's recommendations and we're going to keep a close eye on her. Thanks

[ukbill]

Never loose hope

The HFI diet is not a bad diet as such.. however I do not think your daughter has shown any "normal" signs of being HFI so perhaps keep an eye on her and you change her diet.

If you are checking liver enzymes all the time how about checking her blood glucose level?

If she is HFI then after giving her something with sucrose her blood sugar should rise rapidly and then drop after 20 min .. or something with pure Fructose her blood sugar level should just drop after about 20 min.

If it simply stays the same and dose not rise.. then that is also a possible sign of HFI.

However if it rises after 20 min on pure Fructose then she is defiantly NOT HFI.

Hope this helps and sending you best wishes and good health to your daughter as well.

Keep smiling

[nicoleh]

hI Alisha,
I have to say that what you've said about your daughter didn't sound like classic HFI to me - especially not the bit where she craves sweets. Ironically, your doctors were convinced she had HFI despite not having classic symptoms, and mine refuse to consider it despite the fact that my DD does!

I hope your life is somewhat less stressful not having to keep her away from fruit and vegies.

Something that might help her liver is glycine. I have had dd on it for weeks and her liver enzymes have not been elevated (which is why my doctors won't test her for HFI). This last week I cut back dramatically and guess what - her liver started getting involved! It is a thoroughly studied amino acid and has been shown to be liver protective in heaps of different conditions.

It is one of the main amino acids in gelatine. You can either use bought gelatine made up however you want, or better is to make your own with bones. Roast a tray of chicken drumsticks for the family and when the roasting pan is cool, scrape all the sticky brown stuff up off the bottom. it'll be a bit tacky like candy. Put it in a heatproof jug and mix it with boiling water (1 whole chicken will make enough tacky stuff to make 1.5 cups total - so don't add more than 1.5 cups water. dissolve it around and refrigerate. it will make 'chicken jelly' which kids tend to love. DD has a couple of cups of this daily if I can manage it and it has definitely helped her. it also soothes the intestines pretty well, and even dd's kidney dysfunction worsened when I reduced it.

The other way ot make it is to boil a whole heap of bones (preferably ones with joints, not plain long straight ones) in a pot of water, strain the bones out and cool the broth for 12 hours. If you simmer very slowly for at least 12 hours (use a big pot to make it worth it) then it should jelly up pretty nicely - so long as you use lots of bones for the water. Chicken wings also make excellent jelly like this. any animal bones will do. You can make 10 quarts at a time this way if you have 10 pounds of bones and a big big pot!

anyway, that's something that you can do to help her liver. You will need to tell the doctors that you have done this as it will affect her liver blood tests - they will get better and the doctors will need to know this for diagnostic purposes. I have been tempted to keep my DD off the glycine to get the doctors to pay attention to her liver, but I"ve decided it's more important to keep her liver healthy.

anyway, that might help your daughter, and it's certainly got no harm in trying!

[alisha1234]

Nicoleh,

Thanks, I will def go get me some bones tonight and let the bones simmer away for some great gelatine. Great advice. Thanks alot.