HELP, need advice

[lbog]

I need some help from people who actually have HFI and could help recognize what would be HFI related or not, our GI doctor thinks my son has HFI, but I am not so sure due to some in-discrepancies in his eating.

My son (9 months old) has had 3 episodes of reactions to solid foods since we've begun the weaning process. His first reaction was at 6 months old, we gave him infant brown rice cereal, exactly 2 hours later he began vomiting profusely and repetitively until everything in his little tummy had come up (mostly breast-milk and the little tablespoon amount of rice cereal). He then began dry heaving and had bile coming up. We took him to the emergency room for fear of dehydration because he became very weak, pale, lips were a little blue, and was vomiting for over 2 hours at 15 minute intervals at that point. It was very scary. They put him on IV fluids and sent us home the next day.

Second episode was much the same as the first, only this time we tried banana. Exactly 2 hours later vomiting, dry heaving, bile, limp, for over 2 hours at about 15 minute intervals as well, but I was able to get him to nurse better this time on our own at home so we were able to avoid taking him into the hospital.

The third time he had some avocado mashed and watered down a bit for a smoother consistency. Again 2 hours later - vomiting, dry heaving, bile, about 15 minutes apart, but this time I gave him some watered down Gatorade that seemed to help calm his tummy and he was able to nurse again much sooner that time.

Since those three episodes, and after a couple months break from any type of solids because I was too afraid to try anything, we've been able to get him to eat several solids (pureed chicken, pureed beef, asparagus, barley cereal, and these little baby puffs that are made up of puffed corn, cheddar, broccoli and kale)

Here's the kicker, I recently decided to try peas (almost 5000 mg of sucrose), just because I am convinced that since I gave him Gatorade and he didn't continue to crash further from there on the third episode that he probably isn't really HFI. . . is that a crazy thought? He has not had any reaction to the peas like he did the first 3 foods, so far they've been fine, in fact since giving him the peas he's had the least mucousy looking stools since I can remember with him. The GI doc told me that the Gatorade seeming to calm his tummy could have just been a coincidence that he may have been coming down from his episode by the time I gave it to him...but wouldn't he have had another episode from the fructose and sucrose in the Gatorade after that?

I just don't really think he could be HFI and be fine with Gatorade and peas, but not avocado, which has much less fructose than the others? Maybe I am not understanding this genetic disorder very well?
Any help and insight would be wonderful, I worry that I'm slowly poisoning my sweet boy with sucrose that he shouldn't really be having, but think he should have reacted to the peas in some way by now, right? Or could it go completely undetected until it's too late? I don't want to cause him kidney damage....
Help!?
~Confused Mom

[Tammy]

Hi and welcome to the board.

First and formost I just want to say that I'm a big supporter of doing what you're doctor recommends. Like you, we certainly don't want to do any damage to anyone.

I do agree with you that the Gatorade and peas are confusing. The Gatorade especially. That would really make my daughter sick.

I would say the best thing to do would be to follow what your doctor says, and keep a detailed food diary. As you try new things, make a list. Since your son has a reaction that you can plainly see it should be a little easier to find the foods that work for him and the ones that don't. By keeping the diary you'll get a better picture later on of what the triggers may be.

Like you are already doing, it's best to introduce only 1 thing at a time. That way if he reacts you'll know what it was to.

I'm sure your doctor will be keeping an eye on his liver since you've already got his help in thinking HFI. That's usually the hardest part - getting the medical profession to help.

Good luck and we're always here to bounce things around with.

[colormist]

I'm going to chime in with Tammy.

I typically do not have a problem with avocado (even though it does have very small amounts of fructose), but I could see (being that your son was just weaned and might be extra sensitive to fructose) that a very small amount might cause this reaction.

However, you giving him watered down gatorade definitely would have caused a reaction. That makes me gag just thinking of drinking it. The smallest sip would cause most HFIers to feel awful at least for the rest of the day.

Asparagus, peas, broccoli, and gatorade are all things I would have a definite reaction to. He might not refuse the asparagus or the broccoli (as it doesn't taste very sweet), but I would think he would definitely refuse the gatorade and peas.

Follow Tammy's advice and keep a food diary. This will be your evidence to discovering his condition. It will also help you rule out HFI. Also pay close attention to ingredients. You might notice a pattern with a particular ingredient. You can use the nutritional database (http://nutritiondata.self.com/) to see what foods contain what ingredients. You're going to want to keep an eye for a few days after feeding something new. Fructose can cause lethargy and sleepiness days after ingestion with people with HFI. I'm not sure if babies get ravenous, but it causes me to binge eat.

I've had a doctor tell me (and I'm sure other's here can also echo this) that I couldn't have HFI because I would have died as a baby. I didn't discover my diagnosis until I was in my 20's. I didn't die. My parents did (pretty much) let me choose what I wanted to eat (which wasn't always safe stuff). I'm not sure why doctors tend to say that all babies who are left undiagnosed will die as infants. Most of us on the forum weren't diagnosed as infants.

There are some tests your doctor can perform to get a definite diagnosis for HFI. Those would help rule out HFI so you can move on to a more probable diagnosis.

Personally, to me, it doesn't sound like HFI.

[charlie]

I can't say much more than has already been said except this sounds like a very familiar story to my daughter, in the early days she projectile vomited +++++++ after foods, but after a while, although she reacted (usually in her nappy) it was less violent each time, trouble is this makes it more confusing.

Hopefully your doctor will cover the whole spectrum of -ose intolerances, it may be your son has severe fructose malabsorption as avocado and brown rices are off that list but sugar is ok. It is more to do with the balance of glucose to fructose in the foods (if it is balanced they can tolerate) so worth looking at that on nutrition data too, key in foods highest in and click on fructose and then glucose. www.nutritiondata.com or look over on www.fructosemalabsorb.proboards.com too.

The peas, if he only had a little maybe that being boiled removed some of the fructose as it is water soluble so often soaking or boiling will remove a bit.

the other one to consider that has been brought to my attention recently is congenitial sucrase isomaltase deficiency.

But stick with your doctor, and as Tammy has said, keep a clear diary including sick, poos, sleeping and moods, its surprising the pattern that may emerge, but if you don't write it down trust me - your brain turns to mush!!!!!!

Good luck

[susan]

Maybe I am stupid but..........
Why must you wean off the breast?

[jennifer]

I agree with colormist, it seems most docs refuse to even test for HFI saying that you would be so sick as a baby. We are trying so hard to convince our docs to test for it, and they won't even consider it. Sounds like you have a good doctor which will hopefully help you figure things out.

[ukbill]

We all are self "trained" to accept different levels of Fructose in our diets.

I would join in the vomiting if I had much Avocado also Gatorade would defiantly have me heaving big time.. UKK! asparagus is also too sweet for me.

Breast milk is fine but keep off the chocolates ans cakes before feeding him as I am sure some fructose can get through if you eat massive doses of the stuff before feeding time.

PLEASE do not give him anything tasting sweet he needs to learn not to eat sweet tasting foods they are all unsafe for him to eat..

Please No glucose drinks in particular they are almost certainly contaminated with fructose.

You have to avoid Sorbitol and make sure its not in any IV meds the doctors give him also.

I apologise for not posting recently but I have now 2 jobs and am working some 60+ hours a week.. + traveling..

So time is of a premium.

DO not panic he will grow into a big healthy boy just feed him meat milk and cheese with pasta, white rice and home made bread and just watch him grow!

Forget what the thought police tell you about a healthy diet for us with HFI its all reversed!

[ukbill]

The Glucose in the Gatorade smothered the effect of the fructose in the peas..

However he will have been damaged by the fructose in the peas.. please do not give him ANY green veg for a least a month or two to give his liver a chance to start recovering..

[lbog2]

Hi everyone! I'm sorry I've not responded to all your responses sooner! We have been crazy over here. It wasn't long after I posted that he got really sick and had blood in his stool. The doc on call saw him at our pediatrician's office, but they had me just collect stool samples...I decided the next day to take him to the ER, thank God I did, because he had intussusception (common in babies between 6-9 months, where the bowels telescope back into themselves). They had to perform surgery to get the bowels unstuck from each other. Since then he's been doing really well, but has still had some pretty bad diaper rash off and on. We go in on Tuesday to have him get some blood drawn for the HFI test. Then we play the waiting game for a while until we get results.
Thank you all for your prompt advice!

[ukbill]

I am glad that you might have found the problem.

However on reflection I would like to change my first answer.. Gatorade is a glucose drink yes?

Then he might still be HFI the time intervals are about right for my own self defences.. however giving him a glucose drink will stop the blood sugar crash and his body's defence of trying to get this nasty chemical out of his system as soon as possible..

With me its every 45 min. after vomiting (even the 10th time!) I feel better for a few min then the cold and uncontrollable shakes return, followed by vomiting again. even long after everything has come up ..

Now I would drink as soon as I can after vomiting to give me something to throw up again because dry retching is so very painful.

I pulled all the muscles in my stomach and chest last time.. after accidentally swallowing a glass of Coke thinking it was Guinness!

I was hot and thirsty OK? I "downed it" without it touching the sides.. I know I was in for a bad night after that We were camping and I really frightened my children, my daughter still remembers it and she would have been about 4 1/2 or younger at the time.

Did you give him Gatorade after the other meals too?

ID so then please try him without it and if he reacts then don't give it him again.. (or the Gatorade.. as it will mask the damage and stop him learning to defend himself.

Keep smiling

[ukbill]

Ahh OK so he is not likely to have HFI then

Thanks for that Fred I am very busy on 2 jobs at the same time (60+ hours a week) so did not have the time to research.

Thanks for enlightenment

[hfimomof3]

Is it possible the intussiseption could explain all these symptoms? I think it is great to raise awareness of HFI but it is a rare condition so most of the time it will not be the explanation for infant vomiting. I think it's important not to sidetrack people down a long and expensive HFI diagnosis pathway and thereby miss other possible explanations.

[lbog2]

Hello! We did have him tested for HFI now and the results came back negative. Since then he's had lots and lots of high fructose food items with no problem at all. We are so thankful that he is not HFI, I have never heard of this disorder before and it seems incredibly complicated and awful....you are all amazing to me. Good luck with all the continual learning you all go through with this complex disorder and thank you all for the great input!

[ukbill]

I disagree,

It is not complicated or awful.. once you have sorted out what is and is'nt safe to eat, and developed an aversion to the nasty stuff.

I'm haveing a great life and would not swap it for a bunch of strawberrys..

OK being able to eat the occasional bit of fruit would be nice.. but then where would it end??

The more I read about what the big food companies are doing to your diet.. I am so glad I am eating the far more healthy HFI diet!

Just think .. no risk of diabeties, of being morbidly over weight, no preservatives, emusifiers and the massive amount of addatives "normal" people consume which are likly to increase the cancer risk.. and no articfical colours, flavours or sweetners and hardly any trans fats and hydrogenated fats!

Great! I love it..

[claudiarivas]

Bill Thank you for that positive comment, those who are new to this get really scare when someone says is ¨complicated and awful ¨.........

[ukbill]

Just to add a bit of confidence and an "every cloud has a silver lining" type content, this is for any parent with a possibly HFI or FM child.

Current research in the US is indicating a very strong link between Fructose containing drinks and the age that Alzheimer's kicks in at!

Drinking Fructose containing fluids could bring on the start mental problems 10 to 15 years earlier than people who do not drink Fructose containing liquids!

The link is very strong in drinks. I am not sure how strong the link is in Fructose / Sucrose containing foods.. I suspect it is down to the amount of fiber in the food which will make the difference between safe and unsafe foods.

Research is continuing but we can expect any food or drink that contains HFCS / Sucrose / Sorbitol / Fructose to be illegal without at least a minimum % of fiber within the next 20 years.

Why is fiber important?

The non digestible and the digestible versions of fiber help slow down the adsorption of Fructose to a level that is much less dangerous to the body.

Quite why Fructose is implicated in Alzheimer's is as yet undiscovered but you can bet many millions of dollar's are being spent trying to find out why and how to stop this happening..

I suspect plenty of research dollars will come from the sugar refining industry.. while there is still one.

So if your child is FM or HFI at least they should be long lived and not have to go through the indignity of that disease in old age.

Something to smile about for your children's sake.. but perhaps not for yourself if you like sweet foods a little too much? But by then you will not be aware of it.. your children will however.