recent diagnosis PLEASE HELP

[claudiarivas]

Hello
My name is Claudia Rivas and I am sooo hopeful that I found this discussion board, I am desperately looking for information and support.

I have a six month old baby who have been diagnosed with hereditary fructose intolerance.

-I need to find a doctor-dietiatian that has some experience treating this condition
- A reliable list of foods and products that he can have
- general information on how to handle this, so that he grows up to be a happy, healthy and confident person
-SUPPORT

PLEASEE HELP!!!!!!!!!

[colormist]

Hi Claudia!
Welcome to the board. Everyone is very responsive around here, and we all pretty much agree that trial & error, keeping a food/symptom/mood diary, and sticking to the foods that your kid WANTS to eat (and not worrying about a bland diet) are all pretty great ideas when dealing with HFI. We tend to argue about other things, but we all have our own opinions about how to go about managing this condition.

The good news is you know your son has HFI and that you're very motivated to feeding him properly. I didn't find out I had HFI until I was in my 20's. I managed survive on sheer stubbornness and food-instincts, so I think your son will be just fine.

The bad news is the HFI diet is pretty expensive and you are highly unlikely to find a doctor or dietitian that knows much of anything about HFI.

The good news is that HFI is a self-correcting condition. As soon as your son can correlate sweet-tasting = bad for him, then the easier this condition is to manage. Since you have a diagnosis, he might already know this. The symptoms for HFI kick in pretty gosh-darn quick and it's easy to associate sweet tastes with "I think I'm going to puke". Puking is a bit of error correction (Oh, I really shouldn't have ate that), so you should definitely worry if he does puke because that means he ate something that he shouldn't have. However, it's better that he pukes than to keep attempting to digest fructose.

As for foods, go easy at first. Don't try to introduce a whole bunch of new things at once. You'll also need to grow adept at reading food labels. The list of bad ingredients is expansive and food manufacturers have been sneaking in fructose into just about everything: tinned tuna, chicken, beef, rice, cheese--things you would never expect to have fructose.

I made a Pinterest board with fructose-free foodstuff a while back ( pinterest.com/colormist/fructose-free-diet/ ). I think it's a good starting point. Please be sure to read my notes on each item.

I don't have children, but I think the usual "in the beginning" suggestions for babies are: cream of wheat/rice (plain with milk), chicken (additive-free/broth-free/no retained water/flavor-free), and white rice (NOT Uncle Ben's). You're probably going to have to make your own baby food. I (personally) really wouldn't trust pre-made stuff.

Please don't worry about food pyramids or vegetable or fruit or sweet-treats. In fact, I would avoid all those things until you kid is old enough to communicate clearly about how he's feeling.

Again, I don't have kids, so please check back. I'm sure some of our parents can chime in with better feedback.

Good luck and please keep us posted!

[claudiarivas]

Thank You so much for responding!! and all your tips. It has been really hard for me , this is my first baby he was 5 months (now 6) when he was diagnose, so it was very hard for me to see him so sick.
He had almost a liver failure.

I understand this is a life long process and I will slowly learn, however I really want SUPPORT (which thank God I think I found here) and Information ( sort of like a list on to what is allowed and what is not) because searching the web, I have found so many discrepancies that it will drive me crazy.

I was so worried that my baby wouldnt have a good quality of life or a normal life expectancy. It is increible you were diagnose so late and still enjoy good health (Iam very happy for you)

Thanks again for responding

[Mimi]

Claudia ,
Don't worry too much about life expectany and quality. I'm in my sixties and very healthy. I think a lifetime of avoiding sugar has contributed greatly to my good health. Your child will just have to learn to avoid sweets, most fruits and many vegetables. In spite of your best efforts to prevent it, he will try things and get sick. But that's not a totally bad thing; it's the only way to learn. He will grow to hate sweet tasting things, and that will protect him. He will not feel deprived or be tempted by things that taste awful. Relax and enjoy your special boy. We're here for you.

[charlie]

Hi Claudia,

welcome on board, and its great that your son has been diagnosed so early.

Is it just me or has everyone noticed how much younger the kids that parent are posting about are when diagnosed now, this has got to mean the word is getting out there somehow now which is fantastic. Its going to lead to such a healthier life for these children and alot less stress for the parent. I still amaze at how the likes of Tammy coped without all this info.

One other thing Claudia, if you adjust your profile to add your location it will show up on all your posts, only that diagnostics can vary and so can ingredients depending on where you are in the world, that way we can keep an eye on what we post to you. eg the classic is smarties are safe in the US but completely different and unsafe in Europe, the UK and Australia.

Now, sit back, take a deep breath and start cooking......................

[colormist]

Hi Claudia,
A slightly personal question, but I'm curious as to whether you breast-fed or used formula for your baby (or maybe a combo of both?). I would think most mothers who strictly breast-feed their babies wouldn't notice any food/liver issues until it came time for babyfood. I have no idea how soon parents typically begin weaning.

Also, the web has crazy discrepancies because:
1. It is really hard to determine what foods have unsafe sugars.
2. This condition is really uncommon, so until recently there were never a group of HFIers that could sit around and discuss safe-food.
3. Even the experts on the subject (Dr. Tolan, for instance) will have foods listed that he thought were safe, but ended up having fructose.

HFIers are kind of like guinea pigs. It wasn't until I found this forum that I was able to develop a list of safe food. Even with my safe food list, I still find myself having reactions. It's really difficult to keep a diet that's 100% fructose free.

As a group we try to scour the internet for mis-information and issue strong rebukes to blog writers that are posting inaccurate (and harmful!) information.

Charlie: It's really interesting to see the sudden influx of parents with kids with HFI. The parents specifically want help and specific answers, but I wonder if there are lurking adults that just want information (they don't post, they just read). I'm glad doctors are aware of it now. It seems all the press about fructose has definitely raised awareness.

EDIT: I just looked at the statistics. In the past 24 hours there have been 12 members that have viewed the board and 254 guests. Even counting the bots and not-logged-in-members visiting, we definitely have at least a few lurkers.

[claudiarivas]

Hello to all!I think my prayers have been answered when I sign in to these discussion board, is just what I needed.
You can ask me anything you want, I want to help my baby but I also want to help others, because I do not want babies to die because they werent diagnosed.
This is my story:
I live in Dominican Republic, my baby was born nov.1 2011 and he was a healthy 8 pound baby, I breastfed for two months but then I had to give him formula ( enfamil ) , when he was 5 months they introduced him to fruits and changed his formula because supposely he was lactose intolerant. (they concluded this, because there was some mucus in his poop )
This new milk had NO lactose, so it was fructose and syrup. (similac sensitive)

The symptoms started:
Vomiting
excesive lethargy

They thought it was a virus , than we notice another symptom:
yellow eyes.
They thought it was hepatitis and when everything came out negative they did a sonogram and told me he had goldbladder stones.

This was on a monday and tuesday I was in a plane to miami childrens hospital to supposely operate my five month old baby of goldbladder stones.

When I got to miami, they spend tuesday- friday searching for evverything and couldnt find the reason why my baby was sick, ( no goldbladder stones were found)

friday Dr.Hernandez (excellent hepatologist) told me he suspected it was HEREDITARY FRUCTOSE INTOLERANCE and changed back his milk to enfamil.
he was almost in liver failure
he got all swollen
and all levels were altered
high blood cells counts ect...
He had liver inflamation
goldbladder inflamation

few days after being only in enfamil, All liver level came up and now his doing fine.

however he is almost 7 months and I cant find a specialist or experienced dietitian who can advise on what he can have.

he only drinks milk.

This is my story !! and I really appreciate ANY help that can be provided to me.
I am totally surprise because in my family nobody has this and in my country people dont even know what I am talking about.

[Tammy]

Hi Claudia,
It's sounds as though the hardest part is over for you. Finding out your son has HFI. Too many times the doctors just don't think about it. I'm glad you found the right doctor.

There is no cut and dried answers for you on HFI. Everyone has their own tolerances, likes and dis likes and even their symptoms are sometimes different. As your son gets older you'll figure these all out for him. He may or may not like sweet tastes. He may or may not like fruit tastes. The older he gets the more he'll set his own diet. The best to remember is that if he doesn't want it, there is probably a reason. Don't make him eat anything he doesn't like. His "healthy" diet is not the same as yours. This will all come in time.

For now, when you start solid foods, keep them very safe and simple and only give him one new food at a time. That way if something makes him sick, you'll know what it was. Chicken and white rice is best. He will probably eat the same things so long that you will get tired of it but remember, he won't mind eating this way.

One of the hardest things facing you right now is probably making sure all your family and friends understand how important this diet is. They can't think "oh, just this one piece won't hurt" because it will. Sometimes it's hard for grandparents, etc to learn this. Keep strong on this point.

So good luck and we're all here for you.

[Thanks Tammy]

Thank you tammy for your answer and input

At what age was your daughter diagnose?

Do you have a dietatian or Dr. that has some experience with this?(who treats your girl)

[Tammy]

Hi Claudia,
If you go to Colormist's blog
fructose-free.tumblr.com/
You can read Regina's story. Go back to some older posts. 2/22/12 and you'll find us.

There is also a short version on here
hfiinfo.proboards.com/index.cgi?board=misc&action=display&thread=4

Regina goes to a doctor near us, in Pennsylvania. Since you now have a diagnosis, I would say your doctor knows as much as any does. That's a positive thing already.

As for a dietitian, well, I know more about her than any nutritionist I've ever run across. When I do one, I end up telling them what she can and can't have. I pretty much started with Dr Tolan's lists
www.bu.edu/aldolase/HFI/
and expanded it over the years with the help of some of the older HFIer's on this board.

As you have time, read over the older posts on this board and we'll gain more knowledge and security. YOu're not alone. It's overwhelming at first, but it gets easier.

[ktfrlnd]

Hi Claudia - My Name is Katie and I have a 15 month old son who was diagnosed at seven months of age. I def. understand how you are feeling. Here are the foods we fed/feed my son.
First off, breast milk is the best thing you can feed them, if you are not breastfeeding I found that ENFAMIL SOY is a safe formula. I used the infant and toddler. My nutrionist contacted the company for me the first time and I contacted them when it was time for him to switch to toddler formula. I am in the USA, just to note.

Current daily menu:

Breakfast: 7 ounces of 2% milk, 1/3 cup Beechnut brand infant oatmeal with 2 tablespoons of steamed and pureed spinach and mushrooms mixed together with water.

Snack: 7 ounces of 2% milk, 1/2 cup of puffed rice cereal or plain shredded wheat cereal.

Lunch: 7 ounces of 2% milk, 1/3 cup cereal (mentioned above) with 2 tablespoons of the steamed and pureed spinach and mushroom mixed with water. Some shredded wheat if he is still hungry.

Snack: 7 ounces of 2% milk, 1/2 shredded wheat cereal or puffed rice cereal

Dinner: 7 ounces 2% milk, 1/3 cup baby oatmeal, 2 tablespoons of the steamed spinach and a miniature grass fed beef hamburger patty. ( no added seasoning) I will crumlbe the hamburger up and add it to the oatmeal.

Other things:
My husband reserched the expected caloric intake for a fifteen month old child and cross checked Bram's (my son) diet. The meal plan mentioned above is roughly the caloric intake for a toddler.
I make my own crackers so he will have those as part of his snacks or meals.
He doesn't always drink all of the milk during the day but I always offer it.
Sometimes he throws more of the cereal than he eats!
He does not seem to mind his bland diet at all. We have tried a few things and we can tell immediately if they are too sweet. He will stick his tongue out and literally scrape it with his fingers to get the food off.
Interestingly, we tried whole milk as I read it was better for energy purposes and he refused to drink it! Like it was mentioned it seems to be a very person specific disease.
I limit his beef intake during the week so he won't have a mini burger every night.

I have begun to keep a mini notebook in my purse. The front are Safe foods and the back are unsafe foods. That way when I am out at the grocery store I can cross check ingredients if I see a new product. I have asked family to check foods they eat at home in the event someone finds a safe food I didn't know about.

Feel free to email me directly for a chat! Hope this helps, Katie

[ktfrlnd]

Email address would help: [e-mail]

[ukbill]

Mimi I absolutely agree with you, Claudia he MUST be kept off so called "safe" sweet things there is no such thing for an HFI child.. for far to many reasons for me to start listing here.
Katie I would not do too well on that diet.. far too much spinach ..it makes me not so much ill as jsut not "good" if I eat much of it.. let alone two or three times a day..

I would feed an HFI child much more meat than you are giving your child even at such a young age.. meat and cheese is GOOD food for HFI

Give him some fish and chicken.. what about pastry? unsweetened of course.

I love rice pudding and if its made good and soft should be fine for him.

I also eat Semolina pudding as well and Tapioca is great!

You can spice up his food with herbs.. I use a lot in my cooking and have never had a problem with them.

Pepper is also not a problem. there is a tiny amount of Fructose but you are only going to be adding mico-grams of pepper so the fructose load will not be measurable.

[ukbill]

I use a little fresh ground nutmeg in my puddings.. nice!

[charlie]

I agree with Kate, stick to same foods, the babies won't mind..... after all most only had milk, milk, milk for at least 4 months, they are hardly likely for a few years to sit there and say"excuse me, what about a bit of variety"....... Well if they do you have a genius on your hands.........

The earlier they get used to safe same old the better for their health. Its only us adults that nowadays have variety and colour in our heads about foods and that has to do more with all the celebrity chef TV shows now...... After all our grandparents and greatgrandparents had the same sort of food and whatever was available.