Adoption and HFI

[kayb]

We brought our son home from the hospital 2yrs ago. We had adopted his half brother 2yrs prior. (brother has no health probs).

Right from the start ds had huge issues. We actually meet with birthmother (bm) twice a week (tues and thurs) to get breastmilk from her. We supplemented his feeding with formula. From saturday until tues night he was a different child and SCREAMED Tues night thru about Saturday. I suspected some allergy and started holding off on giving him breast milk - which worked and he went thru multiple formulas (increasingly seeing good results). We even stopped feeding him solids for 30 days at about 7 or 8 months. Ped admits he knows nothing about HFI or FM.

Off to a GI at childrens hospital ds is now 14 months old. Specialist does not even TOUCH ds at appoinment but instead orders a endo biopsy to rule out celiac, malt, sugars and blood draw to eliminate common food allergies. I don't think he even tested his liver levels. (that is my next project is getting a copy of his labs) GI refused to do HBT saying 18mos is too young and it will prove nothing. He won't even refer me to a dietican. He says "why? if you give him grapes and he has a reaction....just don't give him grapes" WTH?

So at this point, I know my son is FM at the very least. He is a different child (understatment of the year) with no fructose/fructans in his diet. I cannot find a specialist on the west coast. (any reccomendations?)

What should I have seen by know if he was HFI positiive?? THANKS!!

[kayb]

I should add birthmother was adopted herself and has no family history, and birthfather refused to complete a medical history.

[colormist]

He won't even refer me to a dietican. He says "why? if you give him grapes and he has a reaction....just don't give him grapes" WTH?

I actually found this really funny. I know that you're dealing with a difficult situation right now, but this actually sounds like a pretty good doctor. People with HFI have a conditioned response to sweets and this response kicks in right about the time the child is weaned. We are notorious picky eaters and usually quite stubborn (cough-cough-bill-cough).

Dietitians will not help--especially if it's confirmed HFI. I've heard many horror stories from people who had dietitians help and were told to give their kid bananas, grapes, and all manner of things that were not safe.

Kids with HFI tend to refuse sweet foods (pop, cake, cookies). They might try them once, vomit, then refuse to eat them. They will be lethargic and vomity. I was always carsick. Any ride over a half-hour and I'd vomit. Your son would also show signs of hypoglycemia when he was hungry (lethargy, brain fog, shakiness, binge eating). He might also really, really, really like potato chips, saltines, and milk.

If you're not doing it already, you should be keeping a food diary so you can track any reactions he might have to his food.

There is one lab I know of in California that tests for HFI. You might have to pay out of pocket. progeneticlabs.com/molecular-genetics

HFI is a recessive gene. It is unlikely that parents even know they are a carrier. Most children that are born with HFI have parents that know absolutely nothing about the condition (and have not even heard of it). The birthmother wouldn't know she was a carrier or know how to deal with the condition any better than you are currently managing it. It sounds like you're doing a good job.

[ukbill]

Cough Cough.. Stubborn.. ME???

Perhaps its from trying to stop people who are addicted to something poisoning themselves?? hay Colormist?

OK yes I am but only for the right reasons..

IT sounds to me like HFI is very likely in this child.I would suggest (but then I would of course ) feeding him on an FHI diet and go VERY light on the "Tolerated" foods stick as much as possible to the "SAFE" foods and do NOT uses artificial sweeteners.

HE started off in life rejecting sweet tastes and this is good natural Pavlovian reaction.. he needs this to remain intact for his life to be as good as it can be.

So do not be seduced by the dark side keep him sugar and all types of sweetener free.. and watch him thrive and grow into a happy healthy strong boy

Keep smiling. hie will grow strong and healthy

[ukbill]

I have just re-read the first posting..

Do I understand he screamed if he was given breast milk but was OK on formula?

Mmmm this is the opposite I would expect for HFI, unless his BM was eating something or taking something he was objecting to? (strong curry will do it).

Other than his birth mother taking something she should be not taking I cannot understand this.

Did you say he reacts to eating grapes? what is his reaction please?

Keep smiling

[kayb]

Great info guys! thank you so much for taking the time to respond. I always feel i am crisis mode with this little guy and it's the unknown that scares us!

Re: Breastmilk. We really didn't put see the pattern until he was a about a month old and they it was VERY obvious. Birthmother just revealed to us about 6 months ago that she hated drinking milk and drank pineapple juice daily. She had government assistance was ate lots of fruits/veggies and ate more then her fair share of junk food and soda.

Re: Grapes - Explosive, mucousy diarreha that was so acidic it made his skin bleed. This was not the only fruit doing this, but after abstaining from all fructose, fructans and sugars, a "nice mom" at a birthday party gave him a grape and took away his corn chip.

Re Appetite: - he does love milk and salty foods. We have had many episodes of unexplained vomiting after sugars, but not fructose.

[ukbill]

OK then a good chance he is HFI then.

I really had strong suspicions about Fructose passing the interface and ending up in breast milk.

Her milk would at the very least have a strong flavour of fruit even if it contained little Fructose.

With regards to fruit and vegies and vitamins..

The old fashioned diet where everything is home cooked and prepared is obviously best for anyone who is potentially HFI.

So long as he gets a little vitamin C frequently there is little in our diet which is missing.

Provided you give him a "balanced diet" not just chicken every day he will need some Liver at least once a week to give him all the B vitamins and a good dose of vitamin A as well along with iron and iodine etc.. and fish of course is very good and safe.

Today I am having my main meal of chicken livers which I will pan fry and have with rice and some salad leaves.

They are very tasty.. however not everyone can handle them raw. (people are so squeamish these days.. )

For a child I would lightly pan fry them until just cooked maybe with some watercress or spinach leaves (no stalks) sweated down for the last few seconds, and blend them with some cream or stock of some kind into a soup.

Do not get sucked into this mind game of 5 a day fruit or Veg.. it is rubbish!

The only advantage of eating 5 a day is to get more Fiber into peoples diet and reduce by perhaps 5 a day occasions when people might eat junk food which is low in fiber and high in sugars and trans fats, like bought cookies or donuts.

His diet being very low in digestible fiber will need some help there.

The best I have found is called psyillium husks.

centurysupplements.com/now-psyllium-husks-whole-vegetarian-1-lb?shop

Although I know you can get them in most countries.

For a baby please make sure the husks are hydrated before you give them too him and do not get the "powdered" variety which I do not think do as good a job and have a strong aftertaste.

You can use them as a thickener for soups or gravy, but be aware they "protect" the foods from being digested easily.. which is a good thing for slow release of food into the blood stream but if taken in too high a dose can stop some foods being digested at all!

Please don't ask me how I know because the details are not nice.. use your imagination and you will not be far wrong! Lets leave it at "past experience" shall we?

Hoping this helps?

Regards

Bill A.

ps keep smiling

[Mimi]

Bill, I agree with 99% of everything you've ever said, but just thinking about eating liver makes me sick. Other than sugar, liver is the most disgusting horrible thing I've ever tasted. Please don't make these mothers of HFI babies think that eating liver is absolutely necessary to sustaining their lives. I've survived 60+ years without it. Sure, I guess it's very healthy if you like it. But if you don't, find other sources of those nutrients or take a supplement.

[colormist]

I second on the grossness of liver. I'm not a big fan of meat (I eat it more out of necessity) and organ meats are double-plus-gross.

Maybe use fish instead of liver.

[ukbill]

But you do eat it! Whats in meat loaf???

Lets think Oh yes mince meat and minced liver..

Whats in burgers, sausages?.. Err OK nothing as nice as less gut wrenching than Liver let me tell you. I am of course talking about Branded supermarket items here not local butchers burger and sausages.

Whats in any processed meat product! loads of the bits that would make even me throw up which is why they are ground up and stuck in something to disguise them..

OK so perhaps eating organ meat is not for some, but how about liver pate?

OK I know its about 45% fat but also tastes not bad really and is a spread and all that disgusting looking stuff is nicely mashed up and stuck in a tube.

If you cannot bring yourself to cook liver for your child then how about liver pate on toast?

DO not get me wrong if I could be a vegetarian I would be I hate the idea that animals have to be killed just so I can live. Not to mention the way most farm / factory food is raised.

Most farm animals do not get any sort of a life before they are killed. although quite why that is important to me I cannot really say.

Anyway I came to the conclusion it was them or me..

So I decided tough luck for them it was going to be me.

But if they had to die so I can live then I had better make sure I respect their sacrifice and enjoy the meat!

If I can afford it I buy organic free range meats partly because it tastes so much better and partly because they have had a much happier life and have seen the sun shining and felt the wind blowing.. etc etc..

I also cook the food to give it as much taste as is possible, If I could afford it I would pay for a dozen buddist monks to pray for my immortal soul, assuming I have one that is.

[charlie]

Ewww. god, it reminds me of the school dinners we used to have to eat. Once a fortnight liver and bacon, yuk yuk yuk, that day most people were off their food. And the dinner ladies used to dump it on top of the mashed potato so even that tasted gross.

To be honest, you would only want to give a baby a small amount of liver due to the high iron content. Much better to stick to plain old muscle meat, there is enough variety with that for kids. And with HFI you have to source all processed meat carefully so less likely to be padded out with offal.

As for your soul Bill.................... wouldn't cost much.................... they'd have to find it first...................

[colormist]

I typically only eat steak, bacon, and chicken/turkey breast. Every now and again sirloin hamburgers or a roast. I have meat about 2-3 times a week (tops). I really can't stand any other kind of meat.

I grew up on a farm. People seem to have this impression that farm-life is happy and pleasant, but it's (quite honestly) full of death. Dead cats, goats, sheep, dogs, cows, groundhogs, skunks, raccoon, birds, fish, bunnies, deer, etc. After a while I grew a bit shell-shocked by randomly stumbling onto another dead kitten in the barn or coming across a huge dead cow in the woods. It's all very unpleasant. When you grow up on a farm, you learn about the meaning of life when you're very, very little. I go out of my way not to kill things nowadays. (I lectured a 3-foot garden snake away from climbing up the side of my house. It took repeat lecturings, but eventually he decided to stay under the porch.)

That being said, this life is still better (for the livestock at least) than the stockyards. My parents had their own cattle that they purchased, took care of, and then schelpped off to be butchered. At least these cows lead happy grazing short lives. Once I get settled in my new home, I plan on trying to find a local butcher that has livestock that has been similarly raised.

It's easier for me to maintain a minimal meat diet and take a daily multivitamin than to attempt to eat organs. I would definitely ralph if I had to prepare organs. Seeing organ meat reminds me too much of my dog eating on a week-old groundhog carcass. It's all very quite unpleasant.

The short of it is, if you enjoy the taste and can handle the preparation, more power to you, but it is not a necessary part of a HFI diet.

[hfimomof3]

What is an HBT test? I am not convinced he has HFI. I would think a child with HFI on breastmilk should do better than on formula. Wouldn't you think? What formulas did you try?

[shan]

Just regarding the pineapple juice thing...it's standard advice to avoid pineapple juice when breastfeeding - not so much because of the fructose (which shouldn't be there) but because of the enzymes which are very powerful and irritating to a baby's system.

[kayb]

Pineapple juice: Birthmom had a hard time making "common sense" decisions, and breastfeeding and diet were no exception. After about a month, we could see a pattern that the days he was on formula were CONSIDERABLY better. Once we cut out breastmilk entirely, we saw improvement. Even with that said - He ALWAYS cried, chronic diarreha, NEVER slept more than 2 hrs at any given time (until we cut out fructose -WAA LAH)

As for formulas, each time we removed dairy, we could see an improvement. He ultimately ended up on Neocate (mix of about 20 amino acids instead of dairy) made in the UK and very expensive here in the USA. In hindsight, not knowing about fructose, I have never gone back and checked the ingredients!

But still at 2 yrs old, he throws up several times a month. Why?

@uk Bill - Why no artifical sweetners? Interesting about the liver, wincing just thinking about it! YUCK. Thanks for all the info.

@hfimomof3 - HBT = Hydrogen breath test, which should not be taken by a HFI'r because you have to consume a fructose solution to test.

[Tammy]

NO NO NO. Stomping feet and pulling hair...........Don't set Bill off again on sweets!!!!!! lol.
I'm sure he'll give an answer on his opinion. Just remember, it's just HIS OPINION. From an HFI standpoint, the ones listed as ok on Boston U's site is fine. Regina eats them daily. (In case you don't already know, he and I don't agree on this)

[charlie]

LOL @ Tammy, don't stomp too hard though ............. don't want injuries on this board...........

[ukbill]

Maybe hair pulling and foot stamping might happen.. Tammy please do not send me the bills for damage done to floors or wigs etc..

But on this subject it is vitally important that the parents of young HFI children understand the reasons I hold this opinion.

The reason Tammy and I disagree is mostly because Rigina is a very specific case and will never unfortunately be able to lead an much of an independent life.. About which I am deeply saddened.

I respect Tammy's opinion and agree with her that for Rigina's specific case only, this is completely correct and no harm will come to her as a result of eating sweet flavours and artificial sweeteners.

However for just about every other HFI the ability to taste very low levels of sweetness and detect hidden sweet flavours is our only real defense against accidental poisoning out in the real world.

If you are used to most things tasting sweet, it makes life far harder to detect the very low levels of contamination we need to taste in order to lead as normal a life as is possible.

There are also major health implications to us with HFI if we eat Sorbitol (an artificial sweetener) and like most people artificial sweeteners and Aspartame in particular causes real problems.. for everyone!

www.medicinenet.com/artificial_sweeteners/page8.htm#aspartamecon

Xylitol A sugar alcohol, has even worse potential problems than Aspartame in that most cells that adsorb it thinking its a sugar and therefore food then die of starvation!

I am not a medical professional but it takes not many brain cells (that I have left) to realise this is not a good thing for anyone to be eating.

Aspartame specifically, also causes me instant blistering inside of my mouth and would cause me real problems if I actually managed to swallow some.

This I do not think is in anyway to do with my HFI condition because I know other people who suffer the same effect if they come into contact with the chemical.

The main problem for the HFI diet and artificial sweeteners is the inability of just about everyone who is used to a very sweet tasting diet to be able to imagine a diet which is free from sweet flavours, artificial or real.

They (artificial sweeteners or sugar substitutes) are not needed and are potentially detrimental to any HFI who wishes to live as free and normal a life as is possible.

As a parent surely this is one of your most important wishes for your child?

This is of course only my opinion, however I have spent a great deal of time researching this and forming my opinion, I am willing to debate it at length with anyone, and also change my option / position on this, should anyone be able to show me a compelling reason to do so.