Reactions to your HFI/DFI condition?

[colormist]

I think this is so funny. Whenever I get into the mood to explain my diet/genetics to someone, their immediate reaction tends to be, "Oh! I'm so sorry!!" It's the same reaction you'd get if you told someone your dog died.

Then, of course, they try to test me to see what I can and cannot eat--and attempt to argue with me about certain foods having sugar.

Do you have similar reactions?

(or maybe I'm just giving this little pathetic depressed look that evokes this reaction? lol)

[Tammy]

The reaction I always get for Regina is usually one of 2, but almost the same. If they know what fructose is, they say "But that's in EVERYTHING, what does she eat?" And if they don't know what it is, they will say, "So what is it" and when I tell them, they then say, "So what DOES she eat?"

And it's funny here, too, just because it's always about the same response.

Of course, she's in a wheelchair, looks like a little girl, and even though she is ALWAYS smiling and laughing, and not a care in the world, She gets the same response as though SHE"S giving them the pathetic depressed look..............Poor little thing. lol. Little do they know just how much of a brat she can be. Just like any other kid.

[colormist]

I got the "what can you eat?" question yesterday and when I explained what I can't eat (which is always easier for me), she asked "so what DO you eat?"

That's when I point to my pixie sticks on my desk. LOL

Before I knew what I had, I would always say that I can't eat sugar. Then people would say, "Oh! I wish I had that problem!" "No, no you don't."

[julienc]

I typically get two reactions when I tell people about my "sugar issues". Normally they feel so bad for me. For instance, if the whole group wants to go out to ice cream, they say "oh we can't, because Julie won't eat it." It truly makes no difference to me. I've never eaten ice cream, I don't crave it, so I don't care if they eat it in front of me. People just CANNOT grasp that concept.

The second reaction is "I wish they could bottle that and give it to me!". Uh, no. Trust me, it's not worth it. Just like you said, colormist!

I sometimes get the "testing" questions where people start listing off food items and see if I can eat it. The thing that always confuses them is the tomato/spaghetti sauce. That's when they start to clue in on how sensitive I am.

One person once said to me "Well pie isn't that sweet, can you eat that?" Uh, that would be a "NO"!! Cracks me up.

If I get diagnosed I think it'll be a little easier to explain things to people.

[sarahk]

I get all those same reactions--and people assume (and have asked) that you should be "supper skinny"

and then people argue with you that carbs are sugars too....aaugh

As for people feeling sorry for you--a few weeks ago, when I was around 33 weeks pregant, my husband (wearing a t-shirt that says "mr. wonderful") went into Cold Stone Ice Cream and ordered some ice cream..then they asked "anything else" and he said no--I"m sure all those people there thought he was the last thing from wonderful--buying ice cream for himself and none for his pregnant wife.

[Tammy]

I had to giggle over the ice cream. We've had many, many stares and pointing and laughing at the local ice cream place. We have 2 small dogs, (cocker spaniels) and we take them along. We all sit at a picnic table, with the dogs on a leash beside Regina. I go over and get each of us what we want, and also get a big waffle cone filled with vanilla ice cream. I then hand the big cone to Regina and then usually go over and hand off Dad's ice cream. Regina holds the cone down for the dogs, who sit real nice and eat it out of her hands. But boy is it fun to watch all the people sitting in their cars, watching the little girl feed her cone to the dogs as soon as we aren't looking. We know they are laughing, thinking she's going to get in trouble.

Since these dogs are her babies, she enjoys this, we enjoy it, and the dogs REALLY enjoy it. Makes it much more fun than when she just sat there with her chips and diet soda.

[Tammy]

okay, I'm still laughing. I guess I can't tell you what kind of dogs I have. I am very glad that Chuck has all the sensors and things on this site. It's nice to know someone can't just come on and start trashing and making it obnoxious.

But when I wrote what kind of dogs they are, it automatically changed it for me.
So................you'll have to take the "thingy" out and use your puzzle solving abilities............. lol.

[colormist]

tammy said:

But when I wrote what kind of dogs they are, it automatically changed it for me.
So................you'll have to take the "thingy" out and use your puzzle solving abilities............. lol.

I read "thingyer" and thought you didn't remember the breed of your dog. lol You know, those thingy-er spaniels...

[Chuck G.]

Hey All!

We just got back from Disney World and had a terrrific time. Thanks for all of the helpful information.

I fixed the Cocker Spaniel - Thingy. This discussion board has a default list of "banned " words and that particular breed of spaniel was recognized.

Chuck

[Kelly Grace]

Hello Everyone!

I'm just going to throw this out there to anyone who would like to answer this.

We have twins, our daughter has HFI. Our son was tested and his test from Dr. Tolan came back negative. Our doctor wanted us to keep them on the same diet until our son could be challenged to rule out whether or not he has HFI.

They are both 3.5, and the doctor wants us to test him this year.

We're just going to give him a piece of fruit or a small piece of cookie then have his blood checked -- specifically his liver levels.

My question: how do I handle this with my daughter? They see my husband and I eat one thing and them another, and are fine with it. I am wondering how she will accept that Charlie, Mom and Dad can have this, and she can't.

I know this is best for her as she will be starting school next year, and this will help her in the end. I'm just wondering if anyone has some suggestions.

Did anyone run into similar issues and how did you handle them.

Thanks so much for your help.

Kelly Grace

[nancyrandall]

I would not offer the food infront of your daughtor at this time, tell you know for sure he does not have to be on the HFI diet. When my oldest was restricted from fruit at age 4 he wanted it all the time. We ended up keeping it out of the house or stashing it away and eating it when he was gone or sleeping. After a few months it was no longer an issue.

I am now dealing with my 3rd who is 21 months old and also has issues with fructose. We have had him on the HFI diet since he was born except for a few tests or mistakes. He is much more difficult to keep the no no's away from. He has gotten into brown sugar left on the table, other kids juice, ect...

He also now gets upset if others have something that looks good and he can't have it. Our latest was some strawberries. I offered him sweettarts but, he wanted the strawberries.

I don't have a good answer for you if you do have one with and one without other than try your best to make sure the one with HFI get something similar if she wants it.

We always have approved cupcakes, cookies, ice cream, marshmellows, ect.... It is not exactly the same but, helps. I do force the whole family to abide by a few rules: We only have approved crackers and chips in the house, we only drink water, milk, tea, and homemade hot chocolate (we don't do any pop even diet). We don't have a snack infront of someone unless there is something similar for them or there is an agreement that some other snack or desert will be fine. This works both ways we have had FF ice cream and been out of regular and it caused a big issue.

Good news is my 7 year old now is very careful to stay away from things because he does not like how they make him feel. I just started teaching him to read labels (this is going to take sometime) but, he was interested in something at the store and I asked him to read me the label. He found 2 items he could not have and put it back with out problem. Now if only his grandma could do the same.

Nancy

[Tammy]

Hi Kelly,
I read your post yesterday and have been mulling it around. I just couldn't come up with any better ideas than what you've already read on here.

I'm guessing how difficult it will be may depend on which twin is the dominant one. If Charlie is the protector of his sister, then it may be easier once Charlie understands it. Maybe he'll want to help keep it away from her. On the other hand, if Lily is the Protector, she may have a harder time allowing Charlie to eat something that makes her feel bad. Either way, it's going to be both of them that will have to make the transition. I'm sure it's going to be hard to explain why Charlie now can and she still can't have something.

I'm sure as they get older it'll be easier, but that doesn't help a lot now, does it? We have twins in the family, but they are all identical, so we've never had a problem with something different for one than the other.

I think you are looking at it right in that it'll be better in the long run. And it's a good thing that she's already used to eating different then others. Maybe that will make it easier to eat different than her brother, too.

When are you going to try this? Keep us posted on how you make out with Charlie. We have our fingers and toes crossed for you here.
Tammy

[Kelly Grace]

Hello Everyone!

Thanks for your posts. They were very helpful in allowing me to sort through all of this.

Charlie will be tested this summer. I bring Lily in for her yearly liver check in July, and will kick off the process with Charlie then. As I said, Charlie's test from Dr. Tolan came back negative, but they wanted us to keep him on an HFI - free diet until now. Lily's specialist said that by challenging him with a small piece of fruit and checking his liver levels, we'll be able to rule out whether or not he has HFI.

Has anyone been tested similarly?

In answering Tammy's question, Lily is the ball of fire, and Charlie is the laid back easy going child. Lily is like 3.5 going on 35! Everything has been a challenge with her, so I think I'm just going to go head first on this one! ;D

Thanks Fred for bringing up a great point that Lily really doesn't like sweets. I make HFI safe sweets ... Charlie goobles them up and Lily nibbles -- then gives her share to Charlie.

I keep telling myself that this will help her in the long run -- when she's in school, etc. And if Charlie is okay -- it will be fair for him to have a diet that his body can tolerate. I read on here once -- I believe Tammy wrote this -- Tammy correct me if I'm wrong -- that HFI restricted people bodies don't need fruit, etc. But we do. So I keep thinking about that.

I'll be posting more, as the kids are getting a lot easier to take care of, and my time is freeing up somewhat!

Thanks again for all the great feedback. Chuck and I feel so fortunate to be in touch with such a wonderful group of people!

Kelly

[Tammy]

Yep, Kelly, I do believe I said something to that effect. It's not a given fact that HFIer's bodies don't need the fruit, etc, but it sure is something that Regina's docs believe. She got less colds and normal type sickies than all the other kids when she was in school. Even when flus were going around, she was the last one to get it, if she did at all.

Actually, I think I've probably been next to rude on that fact one time. ;D Someone who had a hard time believing fruits and veges were bad, and then did an about face and tried to make the whole family eat that way. So I also agree that you are making the right choice for Charlie. You certainly need to keep him healthy, too.

I (like everyone else I'm sure) am looking forward to hearing more chatter about those twins.

[Kelly Grace]

Hi Fred,

Thanks for the great information. When I speak to the doctor, I'll ask about the additional tests for Charlie.

Lily and Charlie take a vitamin C supplement as well. I grind up an adult tablet in their morning milk. They take 62.5 mg per day. Their ped. calculated the dosage based on their body weight.

Since we found out that Lily had HFI when she was just three months old, they have both developed a taste for a wide variety of vegetables. They eat spinach, mustard greens, broccoli, green beans, cabbage, celery, cucumbers and califlower like it's coming out of style!! I was worried about the fiber issue as well in the beginning, but not anymore!

Do you take a fiber supplement? Or do you like high-fiber vegetables as well?

Thanks again Fred for all the information. I'll be setting up the appointments next month for July and will keep you all posted. I'm so grateful for all the information. Anything to make testing easier is greatly appreciated. He's just a little guy and I want this to go off as smoothly as possible.

Talk to you soon.

Kelly

[lisa]

Does anyone else eat cabbage? Nathan was asking me if he could try it the other day and I didn't know. A modified version of cole slaw might be nice to try, if yes.

Kelly, where do you get your Vit C from?

Nate's teacher was saying that she worked with a kid that was allergic to almost everything and over time, introducing him to small amounts of those things made him more tolerable of them. She was wondering if Nate might be the same way. I told her probably not, but didn't explain too much. (It just takes too much time and I've found that people like to argue. )

Seems people feel more comfortable being around him when they choose to believe it is a temporary condition. For now, I leave it at "Well, they'll check him again when he's 5, so we'll wait until then to see."

[colormist]

Well, yeah, Nate WOULD become more tolerable. He would become so used to feeling nauseated constantly, that his body would eventually start to ignore the nausea. That's how I was until recently. I'm certain it's not good for one to feel constantly nauseated and too keep eating stuff that you can't digest to the point that your body treats it like poison. And that's after YEARS of eating "insignificant" amounts of sugar.

Sorry, I get cranky now when confronted with an HFI challenge. You could always say that it's not an allergy. He genetically cannot digest sugar (then snap your fingers in the "Z" pattern and add, "So step off!")

My husband says I only amuse myself...

I know I had something significant to add to this conversation...

OH! Cabbage. I L-O-V-E sauerkraut. I haven't tried cabbage in a while, but I don't see how sauerkraut could be okay and cabbage couldn't be... It's always a possibility.

[Kelly Grace]

Hello,

I buy my vitamin C from my local grocery store. It's even the generic brand. It comes in 250 mg and it's not the chewable type, obviously.

I give them 62.5 mg every day in their milk. I grind it up until its powdery and put it in their morning milk.

Check with your ped. as to how much your child can have. They gave me the above calculations based on their body weight.

Their vitamin C is an adult version with no sugars, etc.

I mentioned that my children can tolerate cabbage. I steam it.

In reference to other people's opinions, I just tell them this is how it is ... period.

I had my children in Sunday School this past year, and for parties I would get the entire menu and duplicate everything with their versions. I was in the class helping so nothing was an issue.

As for school next year, I plan to do the same -- and let everyone know to NOT play doctor with my children. This is how it is. Less is usually more in these situations.

This summer we have our kids on a tee ball league. The snack issue is again coming up. I let the lady know that I will handle their snacks. She knows they have dietary restrictions. She's bringing fruit cups and juice boxes for the other children. I'll bring cheese and crackers and a milk box -- similar in looks to a juice box -- for my kids. I always have their candy with me just in case.

I do some substitue teaching when I can, and one thing I've noticed is the peanut allergy is big. Lactose-interolance issues are real too. So when I say they can't have this or that, I've noticed people don't push it because they are used to dealing with the other restrictions.

Hope this information helps.

Good luck.

Kelly

[sarahk]

I also love cabbage and sauerkraut, and bok-choy--with the red wine vinegar....and pickled green tomatos.

DON'T listen to the teacher who wants to introduce foods to him. A friend (non-hfi) tried to get me to do the same thing after she got really sick from mold in her building-and got better using that trick. BUT HFI is different. Nate, like the rest of us, is MISSING the enzyme (Adolace B) to digest sugars. Colormist is right, all he will be use to is being sick. Not only that, you'll be doing horrible damage to his liver and other internal organs, because the sugar will store there. I met a little girl years ago when I was diagnosed. Her parents forced her to drink apple juice (like all good children) and she had real problems. My parents never forced me.

[kerrynz]

Hi kelly

Just a few things that help people understand the dnagers of giving our kids a little bit to try.

I was told most kids grow out of allergy by the age of two, that is probabaly true, but it puts our kids at risks because they won't as you know.

So i never after a few trials never use the word allergy.
The conversation i use goes something like this

Your child has eating issues and allergies?
No my child doesn't have any allergies. Have you heard of the peanut thing? kids eat and drop?

Well my kid has a liver disorder its eat and the only difference is she drops 24 hours later. She cannot eat fructose ....

After i have their attention it is normally easy sailing but seperating her from all the other most unfortunate but less serious problems is the easiest way i find for people to understand and become helpfull, its just my thoughts

hope this helps a little

Regargds
kerryn