A Message for All

[Tammy]

I have been kicking around the idea of posting my thoughts for some time now. I know this will piss some of you off, but I also know some of the silent crowd will be cheering. So be it. I have always been a great defender of the underdog. And who better to tell mothers off than a mother herself? You can't say I don't understand.
I do know what it's like to not know what is wrong with your child.
I do know what it's like to be told your child may or may not live.
I do know what it's like to be told your child will be completely blind by age 12.
I do know what it's like to be told your child only has 6 months to live if we can't find the problem.
I do know what it's like to be frustrated with doctors.
I do know what it's like to be told your child will never be like other kids.
And through all this, I always knew there was someone out there who was worse than we were. There was a child who did die in 6 months, and there was a child somewhere who did go blind by the age of 12. And on and on.

I used to enjoy this site very much. I looked forward to checking in to see what was new. Hoping someone just found a new item that was safe,(we are still rejoicing over having a "pizza party") or got a great new recipe, or found an easier way to do something, or even just gave someone new a little new hope. But lately the flavor of this site has changed drastically. Have any of you lately noticed the NAME of this site? It's a HFI - discussion board. It is NOT titled "Home diagnosis". We are not doctors here. This is NOT a medical site. The other day the comment (under the banana discussion) was made that we know more than the doctors. What gives anyone the right to say that? Probably Fred and I have more right to say something like that than anyone else, and we would be the LAST ones to ever say something like that. Why would anyone say, or listen to info that was posted on the Internet? Where did that info come from? Either a Dr, or some Joe Blow from who knows where? Just because someone put a couple of initials after their name, and posted something on the web somewhere, it does not make it true. And someone who has read all these things and comments on them, does NOT have more info than a doctor who has trained and studied for years.

It is also time for a reality check for some of you. Not everyone. And I hope the ones that I don't mean, don't also take offense. But sometimes kids are just kids. Regina went through a dill pickle stage one time. She wolfed them down like there wasn't any tomorrow. So should I have immediately thought she was missing something? Oh my god, I must be a terrible mother. I thought it was just a phase she was going though. Turned out she stopped when she got enough of them. Now I know that sometimes your body does tell you things. Just like when Colleayn needed salt. And when Fred didn't want sweets. But not everything is a sign. Yes, I think some of you are over-analyzing your kids. I actually feel sorry for some of them. They aren't allowed to be kids. They aren't allowed to want or not want something without having to explain why.

I just keep thinking that if I was new to HFI, and new to this site, I would be terribly intimidated by all the medical talk, and the what-do-you-think talk. I would now be even more confused than before. I wouldn't even be sure if I belonged here, even with a DX.

Which brings me to another point. Up until now, this post was for anyone who felt it described them. There is only one point I will make that is directed at one person in particular. Yesterday the post was made under Calcium and Adult Vitamins. The question was raised about a vit post that did indeed have some fructose in them. The statement was "Coley's tolerating them well" I'm sorry, what is Coley's DX again? I must have missed that somewhere along the way. I thought it still wasn't decided what his problem is. You don't know what or why he reacts to the things that he does. Why would you even consider advising someone to try something just because Coley takes it? I do say that with Regina. BUT I HAVE A DX that says why she reacts as she does. And guess what? It just happens to be the same as the name of this site.

I was asked why I keep coming to this site when it ticks me off all the time anymore. I thought about that and decided it's because I still care about this site, the people, and really the kids. I feel this site is worth trying to save. I'm pretty sure I know who is going to be hurt by this post, and also who is going to be silently cheering. My intention is not to hurt anyone. I think everyone here actually wants to help others. Kristen must have a heart of gold. But I also think it's time to put an end to all the medical stuff. Lets get back to the true reason for this site and let the doctors handle the medical questions. And we really need to stop being so sensitive to every word someone writes. Lighten up a little. See the humor. Lets stop scaring away the new folks just looking for some support.
Tammy

[fred]

Tammy

All I can say is that I agree with you 100%. I too, have had concerns about where this site is heading and I too, had prepared a posting. So what it is worth, here it is.

Over the last few months I have become more and more concerned about the direction of this Discussion Board. I really believe that we have lost sight of its purpose and why it was created. The name or title of this board is “HFI-INFO Discussion Board” and it was created in support of the genetic condition, Hereditary Fructose Intolerance.

As of late, we seem to be wandering all over the health spectrum.

In addition there have been a number of defensive replies in response to comments that were meant to be helpful. These defensive replies, for the most part, were from people who aren’t even involved with HFI. There has also been an amount of one-upmanship. Folks, we are supposed to be in support of each other, not in competition.

There was a statement made recently that insinuated that we (the members of this board) know more about this condition than the doctors do. That statement is completely ludicrous. Every technical thing we know about our decease was learned from doctors or their published writings.

This board is not a group of medical experts, it is meant to be a place where people with HFI and a few other like conditions (DFI, FDPase) and/or their caregivers, are able to come and share their experience with others like them, and discuss the trials and tribulations associated with these conditions.

None of us should ever prescribe any action. We should simply relate what our reaction has been in a given situation or to a given food. It should be made clear that any resolve by the person asking the question should be checked with their doctor before implementing anything. Otherwise, there are legal implications involved here for all of us.

I have lived with HFI now for over 67 years and with the exception of about three years in my late twenties it has never prevented me from doing anything I wanted to do. Although this condition may seem abnormal to some, to we who have it, it is our normal state. As difficult as it may seem to some people it is after all, all we have known. Discussion on this board should be about what the patient needs and not about what the caregiver wants. Since my diagnosis I have stuck strictly to the prescribed diet.

While on the subject of diet, yes, it might be less confusing to have one official diet rather than the three or four seemingly different diets that are published at various places on the internet. One has to realize however, that these diets are a guide and their use takes a little applied common sense. There may be foods listed that you don’t like or that disagree with you and so if it were me, I would just cross them off. There may be foods on the list that you have never eaten. With these I would try only a very small amount until I knew if I tolerated them and if I liked them. If they bothered me or if I didn’t like the taste, I’d cross them off too. One thing however that I don’t do, is try foods that don’t appear there unless first consulting my doctor or dietician. Most people with HFI (not all, but most) have a natural aversion to anything sweet. This is our protection and I for one would be very angry today if anyone had tried to mess with that, when I was a kid, by coaxing me to eat safe sweets. That aversion to sweets has, over the years, saved me much discomfort and illness.

Because of the creeping of subject matter on this discussion board, I currently feel that I now have very little to contribute and what I do have, nobody really wants to hear. I’m hoping that in future the members will get back to the original purpose of this board and confine discussion to the subjects related to the reason that this group was formed. I also hope will be less defensive about replies that are made by members that are simply trying to be helpful. When you ask a question, you have to make your own decision as to which replies best suit your situation and then check that resolve with your doctor before implementing anything.

Fred

[Tammy]

OH now this is more the response I've been waiting for. I knew it would come.

I don't want to get into a verbal posting fight, but then again, I've been quiet too long. I will say you are almost right in everything in that post. All but the sorbitol part. I've always said to avoid sorbitol itself.

Now the other things, lets see, you mentioned broccoli, green beans, brussel sprouts, alcohols, etc, yep. Seems to me I've seen every one of these things listed somewhere. Oh that's right. On the diet list as OK. hmmmmmm. A diet list from a Doctor that deals with HFI. And is fine for a person with HFI. Or sorry, a person with Adolaise B deficiency. And it was only posted on an HFI info site. I would NEVER give, or "trial" something that isn't on at least one of the lists. The only exception to that is very small amounts of onion powder.........which was first ran past the old dietician.

And the advise you gave to Colleayn to try it anyway was AFTER she questioned it having fructose in it. I agree that she is an adult and able to make her own decisions. And she should. It's your reasoning that upset me. Because Coley tolerates it. What's that have to do with anything? You don't know WHY he can and can't tolerate things yet. But it wasn't just this post that made my blood boil. This was just the newest example. My blood's been getting hotter and hotter for a while now.

So.......if you really want to do this, I'm game. Or we can just wait and see if others want to voice an opinion. We already got Freds. Imagine that. The oldest guy dealing with this problem the longest, and the Mother dealing with the problem the longest both agree that someone without a degree shouldn't be giving medical advice.

[Chelsea]

I joined this board last January shortly after we came home from the hospital after the first of many admissions for metabolic acidosis. She was given a probable diagnosis of HFI, at the time I didn't know the difference between HFI & FDPase, thankfully because being suspected of FDPase I may never have searched HFI and found this board. Gillianne's geneticist was so sure of her diagnosis based on testing he encouraged us not to move quickly with the biopsy.

This board taught me so much, more than, yes, any of our Dr's or dietitians. I still have the first list our dietitian gave me, molasses and brown sugar were okay. I have taught our dietitian much over the past 11 months and I hope in the future another child will benefit from that in the future.

I also stay away from many topics because, like Tammy, my gut reaction is always to think, not everything is HFI related, kids will be and should be kids. Though I also know how frustrating it has been seeing certain things in hindsight and maybe now I reach for a diagnosis based on some of those "littler things" . It is a difficult balance but one I agree needs to be achieved.

Gillianne does react to some fructose foods, less than she did in the past but she isn't HFI or under any of the fructose intolerances but she does have something, we just don't know what. Had you asked me 3 months ago, I would have said FDPase because everyone was so sure. I guess that brings me to my understanding of where Tammy is coming from, though I have to also agree some of the words chosen were a little harsh. I cannot express how I feel now about the liver biopsy, I am so thankful we went forward with it, that we now know what it isn't and we now know we are missing something. It pains me to think what damage I could have done to her had I let something else go undiagnosed and continued with the HFI path. I am now a big believer in diagnostically confirming diagnosis'.

I have grown to care about many of the members of this board. Kristen in particular through IM and I think you are a very caring and special person. I do hope that this board, like many others I have been apart of in the past will overcome the drama and "growing pains". I am sure it will because we are here for the same thing.

That said, I do agree a different board for those "out of the textbook" or dealing with other issues find a forum to discuss their questions, concerns, etc. I know Gillianne doesn't fit the HFI textbook and thus I don't really post here anymore but I thank you all for the tremendous journey, the education, and the many prayers over the past year. It doesn't mean I won't come here and find my fructose question or answer since she is still sensitive but I also respect the nature of this board.

I do hope my history on this board is an example to new and old that you don't really know until you know for sure.

[Tammy]

Kristen,
Lets forget about the vit topic. It doesn't matter what the manufacturer says about it. This is not about whether that vit was safe or not. That was just an example.

I have stated from the beginning the golden rule. If I'm not sure, then I don't give it. The ONLY things I would ever tell someone to "try and see to know for sure" are the ones that are on one of the lists. Never something that isn't on one.

You are right about my getting more and more defensive. I will gladly admit that. It's the reasons for the beginning of this whole thing. You say you are not a dr and don't give medical advice and then you turn around and say that people are contacting you off the board for more info. You don't think this is advising them? You are, without question, very knowledgeable on the subject. But what the new people I talk to need is more practical info. They don't need to be more confused by more and more questions of a scientific nature. And for the ones that need help diagnosing their problems.......This is another thing that we should not be doing. Again, they need medical advice. I know the Dr's are very frustrating, but they are the ones to give the advice. Sometimes it is better to go armed with everything you can find, and sometimes people can actually be a little hypocrondriatic and read all sorts of symptoms into anything they want them to be. Again, that is why it is better left to the experts.

Just to clear up a point. Regina is Aldolase B defiecient, found positively through her open liver biopsy. Dr. Tolans (who I've never met, only e-mailed to) test did not show it. So she is still Aldolase B deficient, just in the 20% that his blood test doesn't show.

I don't know what Chuck's real thoughts for this board was. I only know that in the beginning, when he first started it looking for info for his HFI DX'd daughter, His wife Kelly was sometimes involved in all the day-to-day living aspects and questions of HFI. All the practical info is what she seemed to want. She asked her doctor and dietician the medical questions. I can't even remember the last time she was on here now. Now if I'm wrong, and Chuck is still out there somewhere, I'll be happy to step aside and let this become an all-out medical site.

Marcy,
I agree that Kristen is a very good-hearted, generous person with only the best intentions. And she works very hard researching and experimenting. And that is the problem. She researches too much and confuses the newer people even more. You ask why I don't just move into the next post. That is what I've been doing a quite a while now. The problem there is that all of the posts have turned into medical issues and more questions.

I keep thinking of all the new FI people (I don't care if DFI or HFI or whatever) looking for ways to help cope with this new DX they've just been given. They come to this site, and it no longer has much helpful info. Just more confusing questions. Nothing to help make a day-to-day existence a little easier.

If you start a new board for medical info, I would probably even be a silent (I stress silent here ) reader. I, personally, do find some of it interesting. I have actually learned a lot from Kristen. I just don't think it belongs on here. I already know how to handle and cope with it. It belongs on a medical site.

I really don't feel that it is just Fred and I that feel this way. Have you noticed all the people with already known FI issues that have come and gone? Why did they leave? The ones I've talked to left for the same reasons I'm talking about. They wanted more info to support them in living their life and less about questions that go all over the medical field.

This was not meant as a personal attack on Kristen or anyone else. I only want the best for Kristen's new baby. But I also want the best for all the other new-to-FI-issue mom's too. I do remember how lost I felt in the beginning. I would have loved a site like this one USED to be. That is why I didn't want to just leave like the others. This is probably why you (Kristen) don't always know what to make of me. I've been going back and forth on what to do. Just leave? or Try to restore something good. I have made other comments but have always just let them drop so as NOT to have something like this started. But it just keeps getting farther and farther from the original board. That is why I didn't just drop it this time.

Marcy, I think your suggestion of another board may be a good one. One for practical, day to day living issues, and another one for medical issues.
Tammy

[kerrynz]

Hi there you guys seem to be able to type faster than i can think.

I also stay away from many topics because, my gut reaction is always to think, not everything is HFI related, kids will be and should be kids. this sometimes makes for a sicker child, because i try not to over do everything.
Though I also know how frustrating it has been seeing certain things in hindsight . It is a difficult balance but one I agree needs to be achieved.

I do hope that this board, will overcome the drama and "growing pains". I am sure it will because we are here for the same thing.

That said, I do agree a different SECTION of this board for those "out of the textbook" dealings would be of benefit then we can choose to drop by if we want. We just need to clearly mark the headings.

I best update, Our second daughter was born 16 wks ago. C-section and with feeding issues at 39 wks. I still express bmilk to feed she is thriving.

Our first insight into her future happened at 3 wks she was having a lot of wind and i did research to find a safe wind drop. I thought i had and after dehydration and diarrhea for five days we feel the next step will be a bit slower. As i know our first daughter is quick to refuse on the grounds of taste.

When she said let me try we did.
Guess what those drops didn't pass the test.

Now I'm all for a live Guinea pig [Come on laugh with me} she also was used to test the formula chosen in case we need it.
BTW she chose the only and same one she did as a baby. Interesting

For all you parents two kids are great, busy and ever demanding but I'll never quit being a mostly silent visitor to this board. It is worth all the tears and joys and oh those special moments. Especially when you need help, long lived practical advise, is just a day to day thing that gets things done. As long as we don't take ourselves to seriously.

To fix the wind the nurse gave me an old remedy of "almost to hot" water in a bottle one little tsp an up comes the burp. very safe
Regards kerryn

[Kelly Grace]

Hi Everyone,

Tammy is correct about why my husband created this discussion board, which was for us along with others in the same situation (HFI DX) to find a way to get by, and make life as normal as possible for our child.

I can still remember walking out of the hospital with my 3-month old baby, who nearly died, and not having any information as to how to feed my baby.

Chuck wanted a website/discussion board that was based here in the U.S. instead of Europe, so that when people mentioned products and/or resources, it would be more (local).

As far as the whole medical advice issue, people should read the scrolling message at the top of the board. It is in uppercase and bold letters for a reason.

I can say that I feel personally indebted to the assistance that Tammy offered me early on. She got me started and made me feel like I could manage this condition effectively for my daughter.

We (Chuck and I) would like to mention that he plans to turn this from a discussion board to a complete website with different features that will help us deal with HFI issues.

(Sorry Fred you heard this last year -- Chuck's travel and work schedule has eaten up a lot of his free time)

Chuck and Kelly Grace

[laurie]

Wow!! Iknow everyone is sitting on the edge of their seats waiting on a reply from me, so here it comes, and I will mke it short and sweet......

I dont want to "attack" anyone in particular, but you seem to have put yourself out on the line Tammy so it is you I will address. There are times, this being one of them, that you tend to talk out of both sides of your mouth. I am extremely happy that for all these years you have been able to raise Regina and that things seem to go very well for you, however Regina is not the golden child. As I've have stated in a prior post (no I dont post often) is that times have changed since Fred and Regina received their Dx. Foods are different (thanks to pesticides and fertilizers), people are different, etc.
You seem to be on this kick that if it never worked for Regina then it will never work for someone else. Hmmm, are you our doctor? You get offended if someone "tries" something. Actually what I'm seeing is that you are mostly offended if a person tries something that Kristen has suggested. Well, I guess you can color me as a guilty party on that one. I've tried things Kristin has suggested, but I've also tried things that you and Fred have suggested. I'm a grown adult and KNOW there is not a doctor on this site;however, a lot of things that Kristin has researched have been of big benefit in education Hunter's many doctors that have no clue what to do about him. Let me also add that I have NOT tried anything that has been suggested by anyone on this site without first checking with Hunter's doctors for some type of approval. The reply from his doctors is always the same........the only way to know for sure is to try it and see what happens. Look for any type of change in him, sleep patterns, desire to eat, blood sugar, temper, etc and let us know what happens. Through this site and help from EVERYONE on it, my son, who has endured 22 surgeries in 8 short years, has not had a surgery since last April.
All the diet lists are different, some have things that others dont, for example popcorn!! Let me tell you when I went to the doctors about the popcorn issue it wasn't pretty!! Yet they told me the same thing, trial and error. Had Fred not mentioned popcorn I would have never done it, but I'm happy to say Hunter is doing well on it.
I think the main problem coming from this board is the fact that you and Fred are dealing strictly with HFI issues, and like I said times have changed, and a lot of us are not just dealing with that but with multiple issues reguarding foods and our children. Hunter once again is a classic example in that one. The doctors are now wanting to send him to Duke University because they do believe he possibly has EE along with the HFI. They have determine that if its not EE along with this, then they need to get to the bottom of what it is.
I am one of the people that goes to Kristin off the boards with a lot of issues and I'll tell you why........with Kristen you get all the information you need, not just the icing on the cake, where as with you, you only get: nope, Regina does fine with such-n-such.
Do I do and follow everything Kristin says? NO! I'm not an idiot, Kristin is not a doctor, but neither are you. I'm an adult and can make my own choices and will continue to do so.
In closing I would like to add that you and Fred are not experts on HFI. The two of you are in a different boat then the rest of us because you have dealt with the issue longer and have found what works for "you". Finding what "works" is all any of us are trying to do here.

Hopefully I've covered everything, and hopefully I did it in a decent manner. I will still look to Kristin, Fred and Tammy when it comes to giving my child a better quality of life. And as far as not letting our kids be kids..........you're way off base on that one!! Hunter is all boy!!

Laurie

[Tammy]

Hi Laurie
Thank you for aiming this at me. I am the one who started it and I should be the one who takes the flak for it. So please, as anyone else reads these posts, (I am being serious, not sarcastic here) I will not take it as an attack on me.

I actually agree with most all of your post. My original post was not aimed at everyone. I think you are one that has handled this board very well. I think you said it all when you said that you talk to Kristen off board about all the other things that you can't figure out about Hunter. That is my point. That is where it belongs. Not on here. I'm glad she was able to help you. And by doing it the way you did, you didn't confuse other new people even more.

I do always base my answers on Regina. That is because that is all I can be sure of. And I always state that so no one thinks I know more about anything other than her when I don't. I also state it each time in case there is someone new out there just finding this board. That is something I always try to keep in mind. It's not just the regulars that come in here. Look at the mistakes UKBill made. He was new, had no idea what anyone was talking about, and just assumed that since it was an HFI board, we should have been talking about HFI.

I don't get offended when someone tries something new. I do get worried. I even tried to help Kristen when she did the big test. (with the Dr's ok). You are very good at looking at Hunter's whole picture and making wise choices regarding what you think might or might not help him. But when new people come in here, and don't really know what they are doing, it's just more confusing to them. And they might not be as smart when they don't know what to think.

This board was created to help everyone cope with day-to-day issues, and how to deal with HFI. When Chuck gets time to finish the new site, it'll be up to him if he puts a non-HFI medical link on it. Until then, I just still feel that the new people searching for HFI info, and end up here, should get HFI info. Not all the confusion on all the other issues. I'm not saying those issues don't deserve to be discussed. They do. But only at the right place.

When Kristen first came here, she was as lost as the rest of us. She found her footing here, and has now way exceded my knowledge. But what about the next new lost soul just trying to get a handle on how to start with all this? That is the one I'm trying to look out for. When they google HFI, that is what they are looking for. And they are now the ones who don't stay around because most of the conversation on here doesn't apply.

I may have been a little "harsh" in the beginning of this thread. But I just felt that anything less would not be taken seriously. I needed to make strong points here and stick to them.
I just want to see this go back to being a very good, helpful, supportive site for everyone, by everyone, again.

I hope my points are taken. Thank you, Kelly, for also clarifing what the intention of this board was for.

And I wish only the best for Hunter. Even though I have no idea what EE is, I hope it turns out the way you want it to.
Tammy

[lisa]

I can't help but feel like the straw that broke the camel's back here, since this all started after my last post. With that in mind, here's my 2 cents...

I have used this board as Tammy, Fred, and Chuck have stated was the intent - at least from my perspective. There are a few of my posts that have gone outside the HFI realm and I do try my best to put a disclaimer on them every time so noone gets the wrong idea. One of the reasons I don't post more regularly is that I don't want to confuse issues that are not strictly HFI. It makes me nervous. However, I do value everyone's opinion and there are times where I just need someone to talk to because noone else understands what is going on with us more than you all do. It's comforting to know that most of the time I am not insane and that others may have had a similar experience. I don't feel that IM-ing one individual would give me the variety of feedback I find valuable. (My paying job is as an analyst. My education is in rocket science for goodness sakes. LOL) I welcome critical remarks - they help me to think.

With that in mind, I would really love it if we could divide this board up into sections to allow both types of discussion to occur. Hopefully, this would make it more simple for the newbie to navigate through. I do whole-heartedly agree that we have gotten to the point that it would be impossible to read through all of the posts and form an opinion about what to do when starting out with a FI diagnosis. That is what I most valued about this site when I first stumbled across it.

The best advice Nate's doctors have given me is to follow the HFI diet. They have expressed gratitude that this board is around to give me the real life perspective that they cannot. Whenever he is experiencing a symptom that I feel may be detrimental to his long term health (blood sugar, recurring reactions, etc.), I do consult his doctors and have found their advice really helpful gain perspective that lets him be a normal kid. When all else fails, they remind me that sticking with the HFI diet is the safest choice to make.

I credit the information I have gotten from everyone on this board for Nate's current status of being at 50% height and weight for his age and medication free (not even a vitamin). Are there things that are still not quite right? Sure. That's true for all of us. I hope we can discuss those things somewhere.

[Gretchen]

WOW!!!! I guess now probably wouldn't be the time for that big get together we talked about!!! Hee,hee!!! I also feel kind of guilty, it was my Trader Joes post that started the potassium thing. I know how lucky I am. Jarrett "only" has DFI and seems to tolerate small cheats. I would never tell anyone to try "cheating" because it worked for us, but I'm grateful. I do remember very clearly sitting at our beloved GI docs office last spring getting this diagnsis. The biggest thing hit me when he told us bread was out. I thought this poor child of mine would eat water and sticks his whole life. As hostile as this has turned, you guys do need to know what a godsend everyone was. When I saw the list of conveneience foods that were ok, I about cried. As a busy mom of 3, they are my life line!!! I to tend to by pass the real scientific stuff. I have my child back with this diet. While it hasn't "saved his life" it's given him one!! I was cleaning out his closet yesterday and found about 10 hospital admissions for inconsolability dating back to when he was 4 weeks old. I know even now that the docs thought I was lying. I remember back to the few time we actually almost lost him to seizures and respiratory failure. I don't know if there is a corelation to the fructose stuff, but I cry when I think of my poor baby suffering for 6 years. We were given the run around and even got a trip to a shrink when he was little. Never once did they say maybe it's what you're feeding him. I thank our wonderful GI doc(the 3rd one we've seen) and you gvuys for letting him live life a little more like a normal 1st grader. Take what you want out of every post on this site. My little guy Jarrett thinks you're all great!!!

Gretchen

[CK]

As a newcomer, I didn’t know what this site originally started out as. If there was a problem, a gentle reminder or statement of site intent would have been helpful so that something like this could have been avoided.

I come from a background of working for many years at a different medical Foundation and I was so used to hearing the doctors say “Your best source of information would come from people living with the same disease, since there isn’t a lot of medical knowledge available at this time.” Part of the Foundation included a forum as well, and it became a place for people to discuss medical information, questions, research, bounce things back and forth, etc. So when I discovered this site for fructose intolerance- it was great- it blended in all that I needed. I loved the direction everyone took and the information. Because of my work background, I also have a very researching mind like Kristen and others, and didn’t realize it was causing a problem. When I read about people struggling to get their child or themselves better, I too want to step in and help, even if it may be something they are dealing with along side their fructose intolerance. I was born with several genetic diseases, and because of years of misdiagnosis, major problems piled up and I was the one to suffer. I would hate to see anyone follow that same path.

Regarding the advice given to me, it has been so helpful. I always make sure I re-check things- the website is also very clear about stating that. Regarding the vitamins and calcium, my doctor and dietician didn’t have an answer, and by asking you all, I could check into resources that could have taken a long time to uncover. I am grateful for the information and of course would do some research on it since it is very important to me that it is safe. I would think most people who read the information here wouldn’t just try something without checking into it more- this is serious when it comes to our health. UKBill came in as a person who highly regarded himself with knowledge in the HFI diet, and after seeing his list of foods, there were many items my dietician has told me to stay away from for the Fructose Intolerance diet (chickpeas, lemons, and quite a few more). So I know that even a “seasoned” HFI-er may have info. that I can’t use, but I wouldn’t get upset, rather I use it as a guide.

I am glad that a lot of information was placed on the forum instead of being taken privately between 2 people, so that I could learn more, and get a lot of different people’s perspective and advice. Plus as a newcomer, I wouldn’t know who I could email outside of the forum or who would some information that may help. It is also helping me distinguish what is the fructose part of the picture vs. my other health issues. My doctors & I didn’t have a clue that this was causing the hypoglycemia, night sweats, gout, etc. That is a huge clue in my overall treatment plan. You all have provided good information so that I can ask the right questions to my doctor.

I have a diagnosis of fructose intolerance, & am told I have a highly unusual case, but didn’t have a biopsy. All I know is that this diet works and my doctor told me to follow it, and to cautiously trial and error questionable food they don’t know about. The problem is that even though I have a diagnosis, I am sent home to follow up with a doctor that in the past wanted to treat hypoglycemia with lifesavers candy, when I said I can’t eat sugar, fruits, etc. As you can see, my resources are very low for help in this. I have had to be my own best advocate since I was continually told throughout my life by doctors that there is no such thing as problems with food. It’s good I followed my body until I could find the doctors in my state who knew to look for fructose, etc. (I also have Celiac- no gluten). It is amazing I am here to talk about his at all. I too have been close to death with last rites several times. So I understand the Mothers and Individuals who are researching, questioning, etc. because until they get their own answers, find the right doctor, and get on track, one can’t help but search and search for the truth, hope, & any bit of research to give to the doctors to find help. We dream to get to the place where Regina and others are, where we know a great plan and it supports us, but until then, I understand the quest.

I am one of the people with hopes there will be a place for open discussion, people sharing research & related disorders (since many of us have multiple health issues on top of the fructose intolerance), recipes, day-to-day issues, etc. even if it is in a separate area. There seems to be a great need for it.

[alice]

I have been waiting to see how this situation would progress, dying to type away and give my opinion, not cheering - but waiting and reading. If I posted my initial reaction I would have been too emotional. I realize that my opinion does NOT matter at this point. I feel the need to post but in no way is my intention to aggrevate or provoke this situation any furthur.

I know -(prior to joining this board)- that I am my child's advocate. I think it goes without saying, and it is posted, that anything written on this board is not medical advice, no matter how it is written. This is a reality on this board---and in every aspect in life, especially with a sick and/or chronically ill adult or child. As an advocate -we intervene and choose. This occurs in areas such as finding doctors, dieticians, and support/ info in our health quest. The quest of this board is HFI. This HFI health quest includes reading every food label, every vitamen label, every medicine label, every advise from doctors, nurses, friends, realtives and posts on this site- etc... the list goes on and on... I need to discern perscribed doctor's orders and advise, dieticians advise, etc., and discern EVERY post that I read to decide if it is something that will or will not work or apply to myself and my child.

I have just realized by reading one of the medicine posts that one of my daughter's old medications - being tried new again-was likely the cause for "new" (and old) reactions, and voila! after speaking to the doctor's office it has fructose. But even though I knew to do this and thought I had, I was once again reminded to check again and thankfully found a replacement and ... her reactions have stopped.

After reading the recent posts, I feel that I have caused, and chased some of the rabbit trails on the board that has been an offense. For that, and to anyone that was and is offended, I apologize for offending you and ask your forgiveness. I did not know I was offending anyone and it was not in anyway my intention.

When I joined this site, after watching the site as a guest for some time, I was sooo reluctant because we did not have a documented (by bloodwork or liver biopsy) HFI diagnosis, but was perscribed an HFI diet by my child's metabolic doctor. She continues to need and continues to be perscribed a strict HFI diet. I have learned from the best on this site and now have some advise to share with others. I also know I have a lot to learn!

I was soo thankful to find this site and even more thankful that I could enter the site because it did/does not have a big sign turning you away if you do not have a diagnosis via bloodwork or liver biopsy. There is a site like that, and I was so upset that my child (through me) needed help and I didn't have the documentation to back up her need, and couldn't enter that site. This site has provided the information that I need to educate myself to help her with our quest for an HFI diet. As all of you know on this site, that includes more than food.

Living with an illness or raising a child with health problems is stressful - The general population has No idea what every person on this board has gone through-and continues to go through with diagnosis, current illness, new sickness, flare ups, hospitalizations, prognosis, frustration, isolation, hopelessness, rejection, sleeplessness, and the list is endless... Every sick person and mother and dad of sick children on this board go through trials related to their illness daily/and at different intensitity, stages and times. Sick adults and children are also expensive adults and children... the cause of more stress. I won't even go into any of the other life stressors that we all have. Every person on this site(because we're human living in an imperfect world) has stress in their life concerning health and life issues.

This site is a discussion board and correct me if I'm wrong, should be a group of support. But this discussion board has become an avenue of stress. I don't think the administrator or any of the members want that for this board. I don't want that for this board or for myself.

Every person on this board is working so hard (haven't I said this recently?) to get or stay healthy, or get and keep themselves or their child(ren) healthy? My child is on the HFI diet, and thriving. However, like many people on this site, she does have other medical issues that may or may not be the root - causing the need for the HFI diet.

A "mission statement" would have been and STILL would be a wise thing to post. It would give people like me an idea of what is appropriate and what is not -concerning joining, or if it would be more appropriate to observe as a guest, and also what is acceptable to post and what is not.

If the board is going in a "wrong" direction then someone, ??the administrator?? should administer changes to prevent this from happening over and over again. *If every person on this site that does not have a "true" documented HFI diagnosis -leaves as suggested- this site will go on. But new comers will be back in the same situation before long, and it will happen again.

This bashing is unkind and unacceptable. If this group needs to go in another direction then it should be done in a way that won't leave hurt and wounds.

In closing:
I have been so blessed by this board and by every person on this board. I would like to thank every person individually for all of the help that I have gotten from this site to improve my HFI diet-ing child's life. The advise and support that we have gotten from this board has improved my child's health. I do not take that lightly. The information on this site has given my child quality of life. This board has truely helped me - to help my child in so many ways! Thankyou!
alice

[kristen]

Alice, you have just summed up my feelings perfectly!

The one thing that I'd like to add, or re-emphasize is that like everyone else in the beginning sifting through documentation that is seemingly clear to seasoned FI-ers was overwhelming - as it is for all newbies. Understanding what limited means, and that just because an item isn't 'listed' in an avoid column or a tolerated column that it doesn't mean that it's not a worry - things like nuts, grains, legumes, various corn products, etc.

Tammy's forthright approach with banging us over the head to assure that we understand the simple rule: if it grows from the ground it has fructose (and therefore something to be approached cautiously) is a lesson that came hard, but was something that is strongly held back by dieticians that have a hard time understanding that 'healthy' is relative.

In addition to that Fred's 'golden rule' unsure=avoid, has been the backbone of my research...my quest to be sure when Drs and nutritionists casually admit they can't help because they themselves are unsure (plus unwilling to find the answer).

These 2 things will NEVER be forgotten!

Finally, I too would like to repeat once again how much all the advice, experience and wisdom has helped not just my child's health, but also our family's state of mind and wellbeing. One year ago I would shutter at the thought of another child...not because I was afraid of the intolerance, but because of all the work and misery we had under our roof.

Every step of the way (as inpatient as I have been) has brought us closer & closer to normalcy...something that I have been striving for, and at times watching it slip further away, since he went off breastmilk at 3mos. It is true that it has been I that has battled these Drs, that has purchased the food, that has researched and cooked...but NONE of it would have been possible without the guidance I found here...so, as I mentioned before, you all, everyone, are equally responsible for proving my son with a life that by most accounts is typical! Looking closing (as the Drs and therapists still do today - mostly in disbelief) they CAN detect some atypical behaviors...but I ask you, is there any kid that is 100% typical? Personally I think his uniquenesses are all him...or as a direct result of his life experiences...yes he IS more seasoned than any other 4yo...but that's just one of the infinate things I love about him! In a way I would give anything for him to have had a nice cuddly gentle infancy and toddlerhood - but frankly I wouldn't want him to be any different than he is today! And more than that, it is what will make him such an awesome big brother!

So thank you again for not just helping my little tough-guy, but also for bringing 'family' to a family!!!!

KJ

[Tammy]

Kristen, and everyone else who has responded,
Thank you for remembering and understanding what it's like to be so lost and unsure when first finding this board. It seems to be the thing that most mothers are the most grateful for. That is the part I would truly like to see be the basis for continuing. Supporting and helping without confusing more.

I do agree that veteran, seasoned FI'er's with other problems should have another place of their own where they can ramble to their hearts desire. Somewhere separate, whether it be a link from here, or another board created by Marcy. That way it won't be so confusing for the new guy, and others can join in or not, as they choose. Even Regina, as most others, has other problems. I refer to them now and then, but try not to dwell on them. Just enough to let everyone know what some of them are. That way they can contact me if they think there is another coincidence. An example being.........Her blood clotting issues. I think by now probably everyone knows both her and Fred has them. And Fred and I have discussed them with futer details, but tried to keep it from being more confusing on the board.

As far as being a guest, or being a member, I prefer when members sign in, just because this brain is a little faulty when some are posting that haven't posted in awhile. I like it when they have their supposed problem (whether DX or not, at least what they are following) written on the bottom of their posts. It helps me remember correctly.

I also feel this board is important to Regina and I. Even though we knew what we were doing as far as what her diet needed to be, it is wonderful to share ideas and new things with everyone here. It was a long and lonely road getting here. I think of this board as a little like a family. Every one is different, but in the end, everyone supportive of each other, even if it means telling your sister off once in a while.
So lets lighten up on each other (I'm directing this at myself most of all), remember what this board is for, and have some fun. Let's take it back to being UN-stressful.
Tammy