Is there a HFI convention or conference anywhere ?

[ukbill]

Tammy, No not trying to turn anyone into me.. that is not a thought that I or anyone else who know me would like

Its quite funny really we both want the same for HFI children and to make the lives of parents with HFI children better only we seem to have absolute opposite ideas as to how to do this.

I may be old (ish) but Bitter no I reject that totally, anyone who knows me would put bitter at the very end of a list of my personality features. However impulsive would be close to the top!

However I am able to travel the world and eat in restaurants where I cannot even read the menu because it is a different language let alone have a clue what I am going to get as a meal.

Is it wrong to try to help other people with HFI achieve the same level of independence should they wish?

I am helping (off site) people and parents with small children come to terms with the condition that if not handled correctly, while it may always will be a problem, need not affect their day to day living as an adult.

If handled correctly there is no reason why an person with HFI (not a double zero of course) cannot, for example, go out and enjoy a meal in a restaurant, the ability to detect anything sweet tasting is essential to do this safely so they can detect the smallest amounts of anything potentially damaging in various foods and drinks so avoiding them.

The main problem I am having is with medical professionals who seem to be unable to do a simple test like the HFI challenge test correctly and who all want to do the FM test first.. (like drinking a glass of Water full of Fructose will not harm a child with potential HFI???)

I intend making a posting with information gleaned from as many places as possible so anyone researching testing on the site can find simple step by step instructions.. and references as to where the advice comes from.

I did not mean it as a personal attack on anybody and I hope you did not take it as such. I know your personal circumstances are different to most parents of HFI. I do not dispute your feeding your daughter sweeteners even if I think it inadvisable.

If anyone is so confident that eating Glucose / sweeteners for an HFI is such a good thing, can they please explain why everyone on the site who eats Glucose seem to report poorer health / more episodes of Hypoglycaemia than those of us who either do not eat it or eat very little?

PS helping anyone with HFI live a happier, longer healthier and more fulfilled life is my sole intention and there is absolutely no reason why they cannot be "better" than me whatever that means?

I really hope they can be.

[Tammy]

Bill, you are right in that we both want to help the parents deal with this. We also both want the other things you mentioned like better/safer tests and more awareness. The real difference is that you only seem to be interested in the diet issues whereas I want to deal with all the issues that come along with it.

Eating artificial sweeteners is not going to change their ability to taste sugar. Sweeteners can actually be a good thing. Example - Both my daughter and I drink a lot of diet soda. If we are at a restaurant and they don't have milk (her drink of choice) and the water is terrible chlorine tasting, then she gets diet soda. If by chance the waiter messes up and brings sugar based soda, we both can taste it with one swallow. We know what it's supposed to taste like, and sweeteners and sugar are not alike. If we didn't know the difference, there would not be anything for her to drink. Chocolate is another. One bite of "her" chocolate or one bite of mine is all it takes to know.

When I read these stories of adults remembering how it was to feel alone, different, not fitting in, my heart goes out to them. They don't know what it's like for a child to have nothing but fun at a birthday party, knowing they are not going to end up sick or be made fun of. Some of Regina's teachers even made a lesson out of it. They would ask me to send something in for everyone. The other kids got to see that it was different, but not so different. They would then even help to make sure things were ok. I'm sure there are some adults out there right now nodding their heads and saying, oh what must that be like? To fit in and have friends that want to help instead of kids making fun? To want to go along and not worry? I can't imagine not wanting to leave home because it's the only place you really feel safe.

I'm not saying to force the sweeteners on the kids, but do not deprive them of it, either. If they want something, then just make it safe for them. It will not change how they taste things. They can still be independent to being able to eat in a restaurant the same that you are. It may even make them less afraid to demand to know what/how it is made, and to see the labels in somewhere like a fast food place.

I also help parents off site. I think they are afraid to speak up to you. They almost always thank me for letting them know they are not bad parents because they want to let their kids enjoy life.

Actually, Bill, you are the reason I keep coming back here. Every time I think about hanging it up, I either hear from someone new, or I think about the next new parent coming on here without anyone standing up for them.

And I give you credit for staying more calm than I did this time. lol. I really expected you to let me have it back............

[susan]

I find the variations among individuals amazing. The various degrees of sensitivities; the various degrees of toleration. Pie baking used to make me sick to my stomach. Yet as I got older I could tolerate the smells better.

However, to this day, I sincerely can not even imagine drinking a beverage or eating anything with artificial sweetener. It tastes sweet to my tongue and sends a message straight to my brain that it is a thing to be avoided. Then the message goes to my body. Gag ! Harmful or not, I would gag if I tried to drink or eat the item.

I would like to see a longitudinal studies of our health, chemistry, blood, urine...the works. I would like to see if there are any correlations with other factors. Blood type for example. I would like to see a study of co-existing disorders or problems.

I have decided to gently educate people everywhere I go. Perhaps someday..we can mass produce a letters to our senators, congressmen, or medical boards.
Susan

[Tammy]

Hi Susan.
I so agree with you. It is amazing just how different people with the same thing can be so different. Regina just loves her sweets, but give her something with a fruit smell or taste, and she just can't stand it. Even sour fruit taste. Where some on here can do a little lemon, she would absolutely refuse it.

That is always my point with the kids. Let them develop their own tastes. By no means ever force something on them. I would never make Regina eat that lemon, even thought it's safe. But for the kids who DO want something, then use the sweeteners to help give them what they want.

We had one little guy on here quite a few years ago. He just craved apples. His mother would find him hiding in the corner sneaking that apple. So I feel it's better to find him some sort of artificial apple to satisfy him so he doesn't sneak the real thing.

[ukbill]

The simple fact that Rigina might have swallowed a mouth full of coke is my point exactly.

I know you have a good heart Tammy, but parents are not always around to help and no matter what you say any child with HFI will try to cheat anyway HFI "safe" Sweets or not.

We are DIFFERENT! nothing can change that.

The best a parent can do is give their child the best fighting chance to make a go of life.

Evidence is pointing to Glucose / Dextrose not being safe, both from the point of manufacture and from people who have been taking a lot of it are reporting feeling much better for not having it in their diet.

I disagree with your fundamentally point that eating sweeteners or Glucose dose not effect a persons ability to taste sugar in food.

It plainly will do.

[sarosh]

I agree with Bill. Dextrose is addictive ( at least for me), I am never satisfied wiht little - once I start, I go hunting for the sweet trolleys in the mall for more smarties, or pixi stix or ..... secondly excessive glucose does turn to fructose and sorbitol and lastly one never knows how pure it is. It's through trial and error of 55yrs that I have realized that dextrose is not all safe for HFI even if it does not give you an immediate reaction and is so yummy.

[susan]

Again research and documentation.

[susan]

I doubt if any doctor or researcher has ever documented ALL our biological histories, all our social histories and all our psychological histories. I doubt if any doctor has every documented all the co-existing disorders. The studies seem to be assumptions that just because someone has lived to the age 50 plus, and has not died....they are okay. It looks like the documentations are just ASSUMPTIONS that everything is okay. If you find an up to date study, longitudinal study, which is comprehensive please send it to me directly. Yesterday I put my young brilliant pre-med nephew on a mission to find recent medical journal articles. Not enough is known.
I have already sensed there is co-existing ADD or ADHD. I am clearly ADD. There seems to be allergies, other food intolerances, and a tendency for high cholesterol. I doubt if any doctor has documented any co-existing issues. Activism is needed.

I have learned to speak up for myself. I was going to get an MRi for an enlarged lymph node. My doctor said it was only to be a picture. When I was getting the MRI the tech said they were going to start a IV of some fluid to make my internal organs show up better on the screen. I knew my liver and kidneys were going to clean this chemical out of my system. My liver and kidneys are already compromised due to HFI, so I said no. The tech was going to argue with me. It might have been easier for him to read the pictures,,, but was it going to be to be better for me? Activism.

[ukbill]

It is only though places like this where we can all share information and research that slowly we can all make progress.

We should be learning all the time how to improve our diets and change things we eat to reduce further the Fructose load on our bodies.

I have been accused of being a know-it-all.

I do not know it all I do not think in my lifetime anyone will know everything there is to know about HFI and its associated conditions..

I will however keep trying to find more information and understand in greater depth how we are effected by the foods we eat.

There are now new members on the site, I am very glad to see joining us, who have a far greater in depth knowledge of nutrition that I will ever have. However applying that knowledge in an HFI safe way is where we can all can help

Is there a problem with trying to learn more and analyse the data so we can all share and improve the way we with HFI live and our general health and well being??

Particularly in need of help and assistance are parents of HFI children who are being given contradictory, confusing and just plain BAD advice as to what to feed their children who have HFI.

This is where we with HFI need to help as much as we can.

[ukbill]

Sarosh,

Thank you for confirming this.

I had read thoroughly a lot of postings from people who use Glucose and dextrose a lot and they did seem to be showing addictive type behaviour and getting ill a lot!

So I researched the manufacture of Glucose and dextrose. I found that certainly in the USA all the Glucose is manufactured in the same plant, reaction vessels and filling out machines as HFCS,

Also the base stock they use to produce the glucose is maize.. ie sweet corn which has normally about 4% sugar naturally (not sure which type but most likely Fructose) which is NOT removed in the process. I also discovered that "confectionery" grade Glucose while being 100% pure glucose (on the label) actually is only 60 % Glucose the rest being classified as "other sugars"

I then discovered (I think in Dr Lustigs excellent video ) that we get a blast of endorphins when Glucose is broken down in the brain..

This is similar if not so dramatic as to what happens when someone takes an extacy tablet.

So I looked into blood sugar chemistry and discovered why we do not get a Hypoglycaemic reaction if the Fructose in the blood is below a certain level to Glucose ratio.

However the Fructose will still cause damage and make a person with HFI quite ill and likely to be very prone to Hypoglycaemic reactions frequently which if "cured" by eating additional quantities of Glucose will only exasperate the situation.. its a merry go round of damage being done.

This is the research and thinking behind my advice to everyone with HFI NOT to eat Glucose or Dextrose..

If anyone wants to recheck my research Please do!

Until then the only safe advice anybody can give to parents of an HFI child or children is NOT to give them Glucose or similar sweet foods!

[charlie]

Whew,

this thread seems to have gone a bit skew whiff......

the more we can get together, the better to compare reactions, levels of tolerance and diet restrictions. There do seem to be different levels of tolerance and maybe this is where we all have to tip-toe around the subject of "cheating" and find a safe level responsibly.

A similar topic has come up on the other board about types of FM, do some of these kids have HFI or Fm or both or somewhere in between. Only by all putting our heads and experiences together can we start to answer this.

Yes, we need to help advise new parents on how to reach safe levels, so yes Bill we do have to advise caution on the sweets and in a perfect world we would completely eliminate this BUT having a child who last year spectacularly cheated on chocolate inspite of my best efforts you do have to take into account how they are coping with modern day life socially. So we need to educate and find their safe limits somehow because otherwise they will just do it anyway. So if there is a way of damage limitation, occasional cheats and rebalancing then personally I feel their lives will be better. Chances are, when they are older they will decide for themselves.

[ukbill]

Yes I used the word "cheating" incorrectly.

All "tolerated" foods which are not 100% HFI safe are really cheats using the same analogy.

If I can withstand occasionally say 1g of Fructose in a meal what dos it matter from what source I get it from..

One Baked potato?
I spoon full of green beans?
One piece of Broccoli?
or 3 cloves of Garlic?
1/2 a thinly sliced spring onion?
A heaped teaspoon of finely chopped shallot onion pan fired till golden brown?
One small dash of tomato double concentrate?

They all contain the same amount of Fructose (approximately).

If cooking a special meal they can transform the taste the food.

[flanagan]

Sooooooooo,....

What about that convention huh? I'm in Chicago and my brother is in Colorado but I'm sure neither of us would mind traveling in the U.S.

Just to get this ball back rolling I'll toss out the idea of Michigan. My family has a lake house there. Sun, swimming, boating, fishing, etc. Though I don't really think of Michigan as centrally located to anywhere else

[susan]

On Jun 1, 2012, at 11:22 PM, Susan Walker wrote to Dr. Tolan:

Hello again,

PLEASE, is it possible to tell my when my blood will be tested?
I am trying to be patient.......but it is running low.

Susan Walker
Arkansas
***********************************************
On Jun 2, 2012, at 8:01 AM, Tolan, Dean wrote:

Dear s. Walker,

We are doing the test now, but it takes a couple weeks. We hope to have the test completed by the week of June 11.

Sincerely yours,

Dean Tolan
***********************************
Thanks. I have lived 50 plus years with a mystery disorder. I guess I can wait a little longer.

You...kind Sir....could be an ambassador for this disorder. No one knows about it.
If you do not feel comfortable, imagine one of your grad students going on TV or radio during Rare Disease Day.

We HFI'ers live far apart. Organizing seems almost impossible. You however, seem to be the center of testing and knowledge. You could do us a big favor, and maybe get your lab promoted.
Hmmmmm, I might just post this on the HFI board and get every one to encourage you.

The 6th International Rare Disease Day is February 28, 2013.

That seems far off, but some projects need planning to make a big impact.

www.facebook.com/rarediseaseday
www.rarediseaseday.org/

Susan Walker

[ukbill]

"The 6th International Rare Disease Day is February 28, 2013"

I will be in The Czech Republic around that time. if we are to get some sort of publicity movement going..

I am sure a lot of Doctors and Medical professional's and medical students keep an eye on this site occasionally searching for information.etc..

So I ask them to please make a visitor post if possible when they know of a conference coming up that might be either interested in a few of us turning up to answer questions or where we might find some of the talks interesting and could have a side room / meeting to discuss issues of food additives etc.. that effect us with HFI / FM?

I know in the UK CLIMB (who sponsor research into metabolic illnesses in children) have an annual conference but I have never so far had the funds or available time to go along..

I will see when the next one is and perhaps ask them if they would be interested in a couple of HFI'rs could turn up to discuss our condition with the medical professional's who make up the largest part of the conference.

BLAST it was this very week in Glasgow!
www.climb.org.uk/

However the good news is now they will be planning next years conference.. so I will try to get a plug in for HFI and see if we can get a mention or at least some one to talk on sugar metabolism issues in General?

For next year or maybe 2014?

Will keep you posted when I get a reply.. just e-mailed them about their UK only phone numbers.. they should list at least one number that is dial-able from outside the UK..

So dialog of some sort has been started already

[charlie]

When I last contacted CLIMB they didn't have any other HFI's on their books, and I posted a few times on their forum and got nothing.

[Shan]

...Well that's a big ol' fib! I- or rather my son Will, have been on there for years. Will introduce myself in a bit but it's 2 minutes to school run. fascinating thread - would be up for raising awareness - Bill, I'm not too far away in Birmingham where the children's hospital phone ME for dietary advice...

[hfimomof3]

HFI is a pretty rare condition at about 1 in 20 000. I am not sure publicising HFI really helps or whether instead it distracts from all the other possibilities in the case of any person searching for a diagnosis for their strange symptoms. I do think doctors should know about it, or at least should know what kind of conditions to be thinking about or what specialist to refer someone to if they have problems eating fruit. But, for the general public, I think it would be a bit like trying to teach physics solely by telling everyone all about the Higgs Boson.

I do think that some doctor should create some kind of information sheet for other doctors that would help in management of HFI patients. Even though the primary management of HFI is via diet, there are areas where a physician needs to get involved. Physicians need to know that their HFI patients are going to have a problem if they get sorbitol in a drip or in any kind of medication. They need to know that their HFI patients are prone to vitamin C deficiencies from dietary restrictions. They need to know at what age it is appropriate to begin regular tests of liver and kidney function, since it is impossible to completely avoid fructose in the diet. They need to know what are the special concerns that an HFI patient might have if she becomes pregnant and needs special dietary interventions. They need to know how to use their authority to help an HFI child who is being restricted in diet at school and how to ensure that child is treated appropriately at school in an emergency. There should be a standardised set of advice as to what is safe to eat and what is not allowed and how people with HFI are to get enough fiber, maintain stable blood sugar levels (despite being restricted in their carbohydrates to white rice), and so on.

I am just not sure there is a doctor out there who is the world expert in HFI, since most doctors no doubt see no more than one or two HFI patients in their entire career.

[shan]

???Um.. shall we not tell people about coeliac disease then? Lactose intolerance? Diabetes??

HFI is not so special. 1 in 20,000 is only on the cusp of 'rare'. The Birmingham Children's Hospital had never seen a case before they met Will but were scratching their heads as to why if the stated level of occurrence was to be believed. So where are all the HFIers?...

HFI's effects are often hidden by the incredible innate self preservation of the sufferers.

My mom was 72 before she was officially diagnosed and that was only because my son had been confirmed. 'Luckily' for her, growing up in poverty in a family of 9, if 3 of the kids don't want jam on the bread then no one asks any questions and as the staple diet was potatoes, cabbage and the odd bit of meat then she was hardly challenged on a regular basis.

It's not so easy for those who have HFI but don't know it to stay safe nowadays when even some single slices of bread have almost a whole days allowance in. And with the near rabid push on five a day fruit and veg it gets very hard to argue to the contrary.

If there is life saving/improving information to be had then it should be in the public domain - and I'm including doctors as public - some if the most ignorant and offhand comments i have had have come from doctors. If I'd have listened to them Will would have been in renal failure by now.

One, if not the, world leading expert is Professor Tim Cox at Addenbrookes in Cambridge.

[charlie]

Addenbrookes were who tested Megs genes for mutations. I'm sure that there are experts out there, it is just finding them. i think there is someone at Southampton in the Uk too who knows alot about it, its just finding them first.

Re your mums diet Shan - that is how I liken the the basic HFI diet, what our Grandparents ate before the war, old potatoes, meat, stock and seasonal veg.

As for general info, I think the great thing about a board like this is we are all pooling together sensible advise and ideas so that we can start putting together information that can be passed on to newly diagnosed, their family and medical advisors and schools.

I've noticed whenever a new parent or sufferer joins we all quickly shout the same advice: get off fructose , keep a diary, clear the system.