New in HFI

[minny]

Hi, my name is Morana, i am mather of 1 year old child. We live in Zagreb, Croatia. In the summer when he was 6m old we start to give him first fruit meal ( apple) . Untill then he was just on breasts.First two days i give him just a little and third day i give him 50 ml of baby fruits meal.(apple, banana, peach) After 4 hours he start to vomiting.
And doctors opinions was HFI. After genetic testing in Innsburg,Austria.
We get results.(HFI-two mutations).
From 6.m he is on diet. And he eat just chicken, turkey , veal with spinach,potato or rise.He is also alergic on cow milk( 0,94, rank 2 but that we will test this days again).
Could you please give us same advice and list of food what he can eat. And which vitamine he can use. In Croatia ther is no one whit same diagnose so no one here can help us with no advice.
Thank u a lot,

[fred]

Hi Minny (Morana)

Welcome to the HFI Discussion Board. There is a lady who frequents this board that has a young son with HFI. I would suggest that you read her postings. Her name is "Claudia" and she has done very well with the management of this disorder.

I would like to ask you if they did a test to see if he is actually "Allergic" to milk or did they just think that might be the case?.

The reason I ask is that when I was a child I could not digest regular cows milk. It made me very sick and I'd just finally throw it up along with most food that I had eaten.

In those days (we're talking 75 years ago) the doctor switched me to evaporated milk and I was able to handle that without a problem. Whatever the condensing process changed in the milk made it OK for me. You might ask your doctor about that.

Fred

[minny]

Hi Fred, thank You on your reply..
I will read it as soon i find free time, thank You on advice.
Yes, they make the testing when Borna was 6 manth old, and now they will make test on milk again. I hope that it was just baby alergy( that disapear with time)
Till then im still breastfeath him.(more then one year)
I also make him 3 times on the day meat meal.
I would like to find same person who is from Europe, it will be much easyer for me... Because of list of food and advice where i can buy it...
Also if sameone know if there samewere exist place where we can test B. On how much tolerance on fructose he has..
I have so many question and no one to ask.

[charlie]

Hi Minny, nice to meet you. If he is positive to HFI as gene tests have proven then he will not be able to tolerate any fructose and you need to adapt his diet to stay as fructose free as possible. Obviously this will be harder if he cannot have milk either, but hopefully that has improved.
There was someone on here from Austria, I will try to remember who it was.
But for now it sounds like what you are feeding him is good, try oats, you can make a good porridge just using oats and water, if you soak the oats overnight then heat for the morning it makes it nice and creamy. Make sure you use white rice, and old white potatoes, for lower fructose. Good quality meat, fish and eggs will build up your base diet. Spinach is good, do you use pinterest, Colormist has a good board of products. White flour should be fine too.
Will send you more ideas as i get them.

[tummyache]

So glad you found us Minni! I was very intolerant/allergic to cow's milk even as a new born infant [my Mom couldn't breast feed me, so had to be formula feed in 1942], but was able to keep goat's milk down better. They say it is much easier to digest than milk from a cow. So, if you have access to fresh goat's milk where you are, that may be another thing to try as well. Not sure what is available where you are. I don't know if sheep's milk would be as good,for example. You would have to talk to the doctors there to know if that is OK. Fred is right...sometimes, milk in a different form works for some people... yogurt or cheese may be more tolerated too.

[minny]

If there is samebody in Austria it will be grat!
Yes, he is positive on HFI, ( he carries two ALDOB mutations, one exon 5c.524c>A, and exon 8c.922delG, which is new mutation, neiher listed in mutation database)
I never try to give him oats but i give him barley and he love it. Also i try to give him fish but he dont like it... I have luck to find domestic chicken and turkey and i know that is great quality...

Im sorry about my english but its not my mather toungh...and im better in other languages..
And i check colormist ideas and i love it! But till now my baby boy has just two teeth so nothing from that!
Thank u Charlie!

[colormist]

Hi Minny,

Here is a link to my pinterest board with safe/tolerated HFI foods:

Be sure to read my notes. I will indicate if the food has a small amount of fructose, which, in your case, you will wan to avoid that food because babies have lower tolerances and we want him to be as healthy as possible! I also list in my notes instructions on how to make a recipe safe for people with HFI. I have a lot of things with dairy in them listed. You might be able to omit the dairy and still make the recipe.

Also know that I live in the USA, so there might be some regional differences to the foods listed.

Always pay attention to your baby's reaction and how he looks like he's feeling. Pay attention to your instincts, too! HFI-safe foods should not smell sweet at all.

[minny]

:)Thank You Tummyache, we have appointment next friday in hospital and we will again make testing on milk... I hope it will be fine this time.
I didnt write good in other post.. I know that he cant eat fructose, but im interesting to know how samebody knows how much is tolerante on same food... For example i read samebody can eat avocado, samebody not! Its there in the world same testing for it? Im
Scared to give any new food to my little... If samebody know it i will be grateful!

Thank You, Colormist, i already follow You on pinterest!

[colormist]

I'm going to get a little technical and wordy, but I want to answer your question.

So the short answer is we're not sure on how much is tolerated. The real answer is probably 0. Since the liver can't process fructose, the kidneys have to flush all digested fructose out of the system. The more fructose you digest, the more difficult time the kidneys have trying to process the fructose.

Back in the day, Fred (who might chime in) was one of the first guinea pigs for HFI. The doctors decided that his body (as a full grown male--I'm going to guess around 200lbs) could handle 100 MG of fructose a day. I would guess (to be extra safe) that this number would scale with weight. So a 20lb baby could only handle around 10MG of fructose a day.

Since fructose in in pretty much everything, it means that we have to avoid all foods with fructose in them. An accidental consumption of new potatoes instead of old white potatoes would push you over the limit--and that's not including all the other unsafe things you might have digested which were lumped into ingredients like "natural flavor" or "broth".

In the USA, fructose intolerance isn't considered a serious concern, so they don't require food manufacturers to list fructose/sucrose if it's in the ingredients or if it might have been manufactured in a facility that uses lots of fructose/sucrose--which is a big problem with shredded wheat. Even though the ingredients on Shredded Wheat do not list sugar, you can SEE frosted sugar on some of the pieces because regular Shredded Wheat is made in the same facility as Frosted Shredded Wheat.

So, that's where the challenge is. We do our best not to eat fructose & sucrose, but we sadly can't control every factor of our diet.

As for Avocado, this website is very helpful:
California Avocado: nutritiondata.self.com/facts/fruits-and-fruit-juices/1844/2
Florida Avocado: nutritiondata.self.com/facts/fruits-and-fruit-juices/1845/2

If you scroll down on either of those links and click on "More Details" under the heading "Carbohydrates", you can see the breakdown of sugars.

Per serving size, the Florida Avocado (large, green) has 575 MG of Fructose (which is 475 MG more than an adult male should be consuming). The California Avocado (small, dark brown/dark green) has less fructose coming in at 184 MG per serving, but it also has 138 MG of Sucrose (another unsafe sugar for people with HFI)--so it's also about 200 MG more than an adult male should be consuming.

I do eat the California avocado, but I don't have a serving size. I usually have less than half of one avocado and that puts me right at my limit. I would never eat an avocado if I wasn't feeling very well.

So, in short, that website I linked above is VERY helpful. Sometimes it has a breakdown of sugars and sometimes it does not. If you can't find a definitive answer as to what type of sugar is in the food you're trying to feed to your baby, I would opt on the safe side and not let him eat something that might make him very sick.

The good news is, he probably won't mind eating the same thing all the time. When he's older and can communicate better, you might try to introduce new foods and he would be able to tell you whether or not they make him feel sick to his stomach.

[minny]

Dear Colormist, thank u on your respond.. Im so scared now... In hospital they give me list of food that i can give to my child and avocado is also there. Now i be scared what i will find next!

[colormist]

This information is probably going to be more conflicting than helpful, but Dr. Tolan (on of the primary researchers in HFI) has an HFI diet webpage--even that information is contradictory. You can read the four diets he has listed here: www.bu.edu/aldolase/HFI/treatment/Diets.html

As he gathers new information, he submits a new diet guidelines based on feedback from people with HFI. I find it interesting that it is difficult even for a specialist in HFI to determine what foods have fructose and sucrose without having some HFI guinea pigs give him feedback.

You'll note diet #3 says natural, sugar-free peanut butter is okay, but diet #4 says peanuts are not safe.

If it's any consolation, a lot of us on this forum didn't know we had HFI until later in life. I managed to survive 20+ years eating Cheerios (not safe), Rice Krispies (not safe), spaghetti sauce (really not safe), and strawberries (really, really not safe). Some of these things I ate daily. I did notice that strawberries made me ill if I ate more than a couple, but I thought that was normal.

I really should not have been eating 70% of the foods that I ate and I wasn't the healthiest kid, but I am still alive and I wasn't hospitalized.

The good news is that the condition is self-correcting. Your baby will start to learn right away what foods make him nauseated and will refuse them. Try new things in small amounts and wait an hour or two to see if he wants to try it again. Introduce new foods one at a time to make it easier for you to figure out what's causing a reaction. I would only recommend trying new foods maybe twice a week as some reactions take a few days to show up.

I don't know that much about kids, so hopefully some other parents of HFI-children can give you some more advice.

[claudiarivas]

Hello Morona

My name is Claudia Rivas , my story is quite similar to yours, my son, carlitos, was diagnose at 5 months by genetic testing . You can read my story in past postings. I know exactly how you are feeling because I felt the same way, but you have found the BEST place to get opinions and information , people on this pro board are always willing to help, I will forever be grateful for the attention and help I got from all of them. I am honored to be able to give back and be of any help to you and others, so if you want to contact me directly my email is chkanaheim gmail.com

I got good news for you , For me this is a condition not a disease and it gets EASIER way easier. My son is now three years old, he is perfectly healthy, he hasn’t show any symptoms since he was diagnose, his blood – liver enzymes tests are on point. He lives a normal life… physical, emotional and social.

My advice for you are:

1- This is not a black and white thing. What works for me , not necessarily would work for you. BUT Educate your self and get as much information as you can.

2- Your attitude will directly affect how your child deals with this. I hope your child has a natural adversion to sweets, because that does make it easier.

3- Have dicispline on his diet. I always bring his food wherever I go.



If you want , read my past postings I wrote his diet when he was a baby. And if you have any questions I will be happy to give you any insight I may have.

Wish you all the best of luck , enjoy your child.

[hfimomof3]

Do NOT give him goat's or sheep's milk if he is allergic to cow's milk unless your doctor tells you to do that. Usually kids with milk allergy cannot tolerate other kinds of animal milks.

When my child had multiple food restrictions I was directed to either keep breastfeeding him or giving him an infant formula he could tolerate until he reached at least age 2. That way I could expand his diet very slowly so I could see if he could tolerate new foods without worrying about his becoming undernourished. Is there a formula your child can eat? For people with HFI, a concern is especially vitamin C which people with hereditary fructose intolerance need to take their whole life. Usually you can get medical grade vitamin C without sugar in it from the pharmacy but you would have to look into the dose and how to make it into a form she can swallow. Vitamin C breaks down in water and heat (and maybe light too, i can't remember).

[hfimomof3]

Sorry I am not sure I was clear before. Vitamin C breaks down in water over time, meaning you may not be able to get a liquid form and store it as a liquid (you would have to check with your pharmacist and doctor). But, if you do not have another vitamin C source (such as an infant formula that is safe for her) you might be able to get a form that you can mix into a liquid each day and feed it to her.

[heatherp]

Hi,
I just wanted to give you the name of a vitamin my almost two year old with HFI takes. It is called NanoVM and is available through Solace Nutrition. It is considered "clinical nutrition" and here in the US, some insurances will cover it. It is available without a prescription and can be ordered online and shipped to you.

:-)
Heather