Is there a HFI convention or conference anywhere ?

[colormist]

I moved, from MI to WV.
I didn't know there were three people in MI or I would have offered a mini-meetup!

[ukbill]

The condition is not that rare .. It is however massively under diagnosed!

I live in a town with 60,000 inhabitants.. there should statistically be between 2.25 and 6 people with the condition living local to me!

None of the Local Doctors I have spoken to (and that's quite a few) have heard of the condition or know anything about it, they are therefore missing the condition when presented with the symptoms by a parent or patent.

I am only one of about 30 diagnosed in the whole UK.

UK population 60 million = between 2,750 and 6,000 of us here and only 30 odd diagnosed!

USA population 250 million = between 10,000 and 25,000!

There are a lot of us out there!

Or should be..

IF not then most are die'ing in childhood or living with a debilitating condition which can be easily controlled.

Neither situation is acceptable to me.

The condition needs promoting !

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I am thinking of a circular letter to all the Doctors in my local area pointing out the condition and asking them if they have any patents presenting with our symptoms.

Anyone any ideas as to the wording?

I am pants at that sort of thing.

A standard letter might do the trick and if everyone with HFI on the site sends it to all the local Doctors in their area then we could get the ball rolling and really help some people out there!

[susan]

Well, I think it is rare due to deaths and under diagnosed.

In the 1950's (+ or - ) there was a great surge in processed foods. When was HFI recognized? Shortly thereafter in 1956 in Switzerland, if I am reading things right, due to several children born in a short period of time. Information probably spread from place of recognition, outward. I honestly have never met anyone with HFI, or the symptoms, or anyone who does not like sweets. I only stumbled upon the name of it in 1999 or 2000, living here in the US in Arkansas.

Since food is becoming more and more processed, I think we will see more and more incidences of HFI, or similar symptoms. (Processed foods are not grown in the ground nor grown on trees. They are artificial. This moment in time with processed foods is but a speck of sand on the beach of time. I'm being philosophical. ) I think we were not meant to eat processed foods, but I don't see even myself going back 100 years. But we can be selective. Yet may I distinguish between processed versus more natural type foods.

Also, When the masses started leaving Europe to come to the Americas, they brought their genetics with them. However, I think the population here was more sparse and diverse. Could I be wrong when I think there is a greater gene pool in Europe? Honest, I have never met anyone here. I honestly thought I was the only person until 2000 when I found information on the web.

Here is another thought, are we bringing this upon ourselves by messing around too much with our food supply? We have moved from apples, to apple pie, to Pop Tarts (for example). Again, food in a more natural state versus highly processed foods. My family is about the only family I know who still cooks and eats at home. WE ARE STRANGE.
I ponder the meaning of life too much. I know. Susan

[ukbill]

Every country seem to be following the American diet and eating more and more highly processed fast food ..

Funnily enough Americans live for 10 years less than the average person in the UK and we live on average 10 years less than the average Norwegian ..

Could be a link?

[susan]

I did write to the La Leche organization(promotes breast feeding) informing them of HFI and how it can impact babies... and how breast feeding is a good thing. I am trying to figure out what I could do for activism. I have thought about downloading the logo and making myself a T-shirt. I need to think about what else I could do. Susan

[susan]

P.S. I personally think Sudden Infant Death Syndrome, SIDs, could be something other than just a sudden infant death. The babies can't say their food is hurting them. Susan

[ukbill]

Having experienced losing a child to SIDS I can say that I doubt it.

A SIDS diagnosis or autopsy report is fundamentally a baby who dies with absolutely no warning or underlying health problems which can be identified either before death or after in an Autopsy.

If there are known or discovered health problems the death certificate will show this and a record of SIDS will not be made.

Historically many SIDS deaths were reported as "OPEN"

I doubt unless given an absolutely massive dose of sugar a baby with HFI would just die overnight, anyway there would have to be considerable liver and other organ damage for this to happen, and that would be picked up on the autopsy.

With my second son he was perfectly normal and healthy until he did not wake up one morning aged 6 months.

Yes he had a cold but not a bad one, but he would insist on sleeping on his tummy, which we have since been told is a real bad idea as most SIDS happen to babies put to sleep on their chests.

The Autopsy ruled out HFI (I did ask for the check to be made on samples of his liver just in case)

My Daughter had a Liver problem when born she could not convert body fat back into blood sugar until she was 6 months old.

So she never woke up for a feed until she was over 6 months old. Sleeping through from birth.

To start with my wife would get her up for a feed as she was "ready" to feed her even if Jennifer was not ready to wake up.

However as the time between meals got longer one day we noticed Jennifer was not breathing.. her blood sugar level had gone so low she had stopped breathing.

At one time the aponeia monitor was going off up to 6 times a night until I got fed up with the advice from the baby specialist at the hospital, and fed her a bottle of milk at midnight.. she slept normally trough to 6am without an alarm!

So after this I would get her up and feed her every night at midnight until one night I heard her calling and went upstairs with her bottle ready to find she had woken up herself and was hungry!..

Unfortunately she then would wake up EVERY night at midnight and want to play and eat till 2 or 3am.. until she was 4 years OLD!

Its a miracle she ever got a younger brother!

[susan]

Yes I am sure you are right. The mystery of it ALL makes one ponder. So much is not understood or known. I just wonder about those mysterious deaths and desire things were more definitive. Did not mean to offend.

Could some doctor just brush things aside and say it was SIDs because he does not know? Just like I am brushed aside as being too picky with food? I have a medical doctor in the family and I can't even get his attention to take me seriously when I ask for Medical Journal Articles. Or maybe a mother gets written off as being too controlling, or neurotic, or even a mother being accused of making her child sick by Münchausen syndrome by proxy....? When in her heart she knows something is wrong.

Thanks for the health discussion. After 45 years of pent up frustration...I have an outlet. Susan

[esmee]

Susan,

Looking back on my own history, I ate a very low fructose diet as a child. I am not officially diagnosed with HFI, but I have come to the conclusion that I am definitely very sensitive to fructose one way or the other. My health problems did not really begin until after I decided to become a vegan at the age of 16. Well, adopting a vegan diet increased the amount of fructose in my diet exponentially. I just gradually got sicker and sicker and could not for the life of me figure out why. I now believe it was the increased fructose content of my diet. It has never made me out-right nauseated after eating it, and so it was difficult for me to identify it as the culprit until now.

I do think that the increase in sugar consumption after WWII and the further increase in sugar consumption with the advent of HFCS and its inclusion in practically every processed food in the market is going to bring this genetic disorder to the surface for people who have it. As long as people were eating a very low fructose diet prior to the industrial revolution, it would rarely have been an issue for people who have it. Clearly, many people with it today have made it through their childhoods undiagnosed and just figure out what foods to avoid as they grow into adulthood.

ukbill,

I do wonder if some SIDS babies could be dying from hypoglycemia? Is there anyway to test for that after the child has died. It sounds like Jennifer would have if you and your wife had not been so vigilant. If your son was being breastfed, then he would not have had any liver or kidney damage because he would not have been ingesting any fructose. I doubt that all SIDS babies die from the same cause, and I suspect that there may be some connection between the genetic mutation for HFI and your daughter inability to convert her body fat into energy. More research...

[buddhasbelly]

UKBill, I just wanted to say I am so sorry you lost your son. I hope the discussion here about SIDS doesn't stir up too many questions with yourself about what happened than. Not knowing exactly what caused his death must be very difficult.

I also wanted to reply to the topic about an HFI convention. I have a first meeting with the geneticist at my hospital at the end of the month, so I am (cautiously) hoping to know by the summer whether I have HFI or not. If so, I would really like to join a possible UK gathering! I will be in London in July anyway for a week with my family (befòre the Olympics, not during), so maybe then we could meet with some people. Although I still cannot believe that it would be possible for me to have HFI, but this has been such an amazing year full of weird discoveries. Who knows :-)

BTW I will also be in London for two days in April, since my sister picked me to enjoy her birthday present with her (a concert of Frank Turner and Billy Bragg), but will be mostly in Maldon than, and probably won't know anything than yet.

[denverjay]

I just updatd my profile to add my location, did not realize it was not there.

I am undergoing process to be tested/diagnosed HFI. Pretty sure it will be positive. I have hated sweets my whole life including as an infant. My younger brother is the same way. Everyone just thought we were weird not eating any fruits or vegatables at all.

I am 40 years old and never heard of HFI until late last year.

[buddhasbelly]

Hi Jay, welcome on board! That must be weird, learning about it after such a long time (a familiar story here for many of us, incl. myself). How did you hear about it? And how far along are you in being tested? Did you already find yourself a good doctor?

[ukbill]

Hi Esmee,

If Jen had died her autopsy would have noted very low blood sugar levels so it would not have been put down to SIDS.

Yes her condition might be related to HFI she still has problems when she has not eaten for some time with low blood sugar but nothing dangerous.

SIDS is very specific in the diagnosis, they go to very great lengths to first discount murder!
Yes we were cautioned by the Police and did not know if we might be charged with murdering our own child for over 2 weeks while they did all the tests!

Like we needed that over hour heads while we were trying to come to terms with loosing our beautiful boy.

The SIDS diagnosis is only given if EVERY other possible explanation is discounted.

They say he died because he had a cold and crawled backwards under his covers and over heated.

Apparently he overheated, had a fit and died.

By the time he stopped breathing he was already brain dead or so they said, this is common with SIDS deaths they cannot be resuscitated after they stop breathing.

On the few occasions they have been resuscitated they all have totally crippling brain damage.

[esmee]

Thank you, ukbill, for explaining that. You have taught me something new. The over heating makes a lot of sense. I am sorry for bringing up painful memories.

[ukbill]

Well I do not mind if it helps other people out and increases understanding.

I know it could have been worse if you have to have a child die, it falling asleep happy and just not waking up is really best for the child. If not for the parent.

I will do anything I can to avoid any parent having to go through that experience!

Perhaps it was "just one of those things" a "chance occurrence" etc.. but I feel I slipped up and missed something which meant he died.. That is with me every day of my life.

So I am now "driven" to try to avoid this happening again, if I can do anything to avoid it.

If James had not died then we would have lost my daughter, no question. We had a lot of additional support when Jennifer arrived and an Apponeia monitor as well, which saved her life many many times a night.

That also is not a period of my life I would like to repeat.

Last week I took people home ,in my Taxi, from a wake for a 21 year old lad who died suddenly in his sleep. it was diagnosed as SIDS (although really it should be classed as SADS Sudden Adult Death Syndrome)

So it is not only children that this happens to.

My only solace is "it could have been worse" for my child, he could have suffered greatly and then died, for example we might have had a house fire.. now I do not think I could have got over that at all.

So when I read or hear about sick children particularly with HFI or sounding like HFI.. I come in all guns blazing!

IF I upset a few people (parents particularly) then sorry but they must understand how important it is to get it right.. and of course have no idea just how much it hurts when we get a reaction!

I know how hard this is for parents because no one can cook or prepare food which is reliably HFI safe.. it really is nearly impossible these days with the prevalence for everything to have sugar or sweeteners added, so easy short cuts are popular.

This above all other reasons is why I keep stressing that eating Glucose, artificial sweeteners or drinking "Diet" drinks for an HFI is a really really BAD idea.. we all need to keep our tongues and taste buds trimmed to reject everything tasting sweet!

If we want any sort of real life that is.

Parents who insist on feeding sweet tasting foods to an HFI child make me VERY angry for this reason.. I believe at the very least they are depriving their child of ever having a chance of a real free life, and committing them to a lifetime of illness and being sick all too frequently.

Rant over..

Apology to anyone offended, but if you are a parent and feed your HFI child theses things I will come down on you like the wrath of GOD!

OK well it was .. nearly

There are so many easy ways to feed HFI healthy (for an HFI) food which simply misses these things out. OK cakes are a problem.. but it is possible to make HFI safe puddings and trifles for parties etc.. it only takes a shift in how you think about food, and being prepared to try new things.. yes and fail frequently until one day you start getting it right.. it then becomes easy (er)

Sorry I seem to have a lot of frustration coming out on here today

[esmee]

Simple sugar, whether fructose or glucose, is completely unnatural. Even for people with no metabolic abnormalities, it is not a great idea to eat sugar. It definitely distorts out taste buds, and it acts like a drug on the brain. Unfortunately, sweet foods have come to represent "love" for some bizarre reason that I still do not understand. Parents who deprive their children of sweets are often accused of not loving their children, like it is some form of child abuse. I think the real problem is that the parents of the HFI children want to be able to eat sweets in front of their child without feeling guilty. I completely support your position on this issue, ukbill. Keep up the good work!

[ukbill]

The simple reason is Sugar is addictive!

Just about everyone is addicted to the stuff so anyone who says.. "hold on as minute this is not right" is treated as being mad or at least odd.

Now I will be the first to admit to being "odd" but its a bit like the old fairy tale where an evil witch makes everyone mad except the king.. so the people lock him up for being in their eyes mad.. (a version of the Kings new cloths I think).

I know a few people in the Forum still think I should be locked up.. but you should have been on the forum 5 or 6 years ago!

Just about every posting was about Glucose recipes, which artificial sweeteners were HFI safe and people advising parents to go to MacDonalds and give their HFI child "Diet Coke" etc..

OH yes and about how dangerously ill they all were all the time! DOH!

The first time I said "now hold on a minute, this just is not right" I was flamed BIG TIME!

SO I left them to it for some years.. apparently there was a big argument and a few of the more strident advocates of to feeding glucose and artificial sweeteners left the site..

My heart go's out to their poor children.

[Tammy]

OK Bill,
I have left you rant long enough. You've pretty much been talking to adults so I've just let you go. BUT now we have a couple of parents back again, and I will not sit back and let you go. Now I've had enough. And you certainly had to know this would set me off.

There are many good reasons to use sweeteners, many of which I've gone over with you before so I won't bother to again.

The real problem here is that you aren't trying to help these kids - you're trying to turn them into you. And I, for one, do NOT want my child turning into a bitter, know-it-all old man. Yes, I feel sorry for how you had to grow up. How no one understood and how you had to learn yourself. But that was your life. It's not our kids lives. We DO know, and we DO understand, and we can make a better life for our kids than you had. We want better for our kids than what you had. And our kids have options. I'm sorry you did not, but stop trying to make these new parents feel guilty over wanting a good, safe, healthy, FULL life, even filled with things like fitting in with their friends. Actually, having friends even.

The reason you were flam-basted before was because you were as wrong then as you are now. They are your opinions. OPINIONS.

Children who learn to eat wisely, safely, and satisfyingly, are far more open, full, and relaxed adults. And they are much more apt to NOT cheat, therefore they are seldom ill. Even you yourself admit to cheating. My daughter NEVER cheats. She doesn't have to. She gets a safe form of whatever food she wants.

Now I know this will trip your trigger, so be it. I will not let you badger these poor parents who only want a better life for their kids than what you want them to have. They don't need to be you. They can be themselves. They can be better than you.

[susan]

This is why we need research, research, activism for more research and more research.

So we can have better facts about the disorder and better answers to our questions.

This is a multi-dimensional disorder not just biological. Yes is impacts biology, but also psychology, sociology, and spirituality.

This is a great sounding board. I have needed that. I think the longer one has lived without diagnosis, or without understanding,,,,the more one has to unload. I sure do.

I believe all here have some righteous indignation as well as compassion for children. Compassion is important. There will be a natural learning curve for the HFI person. One must go through trying to fit in. Yet,with research and education, hopefully it will be easier for those in the future.

We need to speak up to educate. We need more activism, more awareness, and more research. I have heard all of you and all of you care enough to be passionate. You all care. We actually need that.
Thank goodness someone cared enough to make this site.
Susan

[esmee]

I appreciate the difference of opinion here and I hope everyone will continue sharing their opinions.