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Post by shereeharris83 on Mar 17, 2007 23:13:18 GMT -5
Hello, after a long time of searching the australia net without success i was so happy to stumble upon this message board. I'm 23, was born with HFI, diagnosed when i was 3. Like most of you its been very hard growing up without knowing if symptoms are hfi related or not. My main symptons are tiredness & colic. Does any body else get colic??? Sometimes i get it for just a day and then sometimes like recently i've had it for 2mths straight, doctors keep saying its stress related but i beg to differ. I'd love feedback on this and also if anybody knows any colic pain releif if they suffer, nothing is easing the pain.
Once again, thanks again so much for the support group and i look forward to hearing replies
Sheree
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Post by Tammy on Mar 17, 2007 23:42:20 GMT -5
Hi.
I'm also glad you stumbled upon us. We're always happy to chat about all the HFI stuff. It's also nice to share our old ideas and get some new ones.
I am intrigued by your symptoms. What is colic? Here (in the states) we say babies that cry for more than 3 hrs for more than 3 days a week, for more than 3 weeks, have colic. It's the rule of "3's". Some people believe it is from gastrointestinal problems, but others don't. Is this what you're talking about? A lot of HFI people do have gastrointestinal problems. The only real cure for it is to avoid fructose all together. Once you're feeling good again, some can find what their "limit" to fructose is. This limit does vary quite a bit from one person to another.
My daughter is 24 and was diagnosed at about 2 1/2, so I've been dealing with HFI for about as long as you have. We very rarely have to deal with symptoms since we are very strict with her diet. The most problem we may face is if she eats just a bit too much broccoli she'll get diarrhea. Other than that, we advoid anything we're not sure about because it's just not worth being as sick as she gets.
So welcome, and I'm sure others will have better ideas for you than I have on this, since mine is all "second hand".
Tammy
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Post by shereeharris83 on Mar 18, 2007 1:00:09 GMT -5
Hello, thanks tammy,
Your exactly right about colic - its what babies get, however i've had it all my life - i think it is the way my body to reacts gastrointestinal problems, my tolerance to sugar is not very good at all, i'm always sick from colic, very very tired, hypoglaecemic and i'm still after all these years not sure what type of sugar subsitute i can have to give me energy. Is there anything anyone knows of for enery. By about 3pm every day i'm ready for a nap which obviously inteferes with work alot. Cheers
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Post by Tammy on Mar 18, 2007 21:27:59 GMT -5
I do know about pixy stix. I used to eat them as a kid. It is basically dextrose in a paper straw. You just open the end and pour it in your mouth. Just be careful you don't get the straw wet or it won't come out. hehehe. I haven't seen them in my area for years. Of course I haven't looked either. I've never given them to Regina because they are all fruit flavored. The ingredients say "artificial and natural flavors". Since a lot of other people use them with no problems, I'm guessing the natural part is very little, if any. I just never took the chance on them. The other reason I've never given them to her is because she doesn't like fruit taste. Things like sugar-free Kool-Aid or jello she never liked. She never developed Fred's natural adversion to sweet, but she did to fruit tastes.
It could be something handy to keep with you since they travel well (as long as they don't get wet) if you have a problem with hypoglycemia or even just to flavor water. It's just not something that ever worked for us.
If you google them, you can find them online to buy.
And one other thing, The "Giant Sweet Tarts" are not HFI safe. Only the regular ones. Just something to always check.
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Post by sarahk on Mar 20, 2007 12:32:49 GMT -5
I love SweetTarts and PixieStickies–and I’m excited to get the duck and bunny shaped ones now that easter is here
But be careful, my dad’s a dentist and has told me that I’ve stripped all my tooth enamel–which is probably a result of years of throwing-up and eating sweettarts and pixie sticks, and they are both very high in acid (citrus) concentrations
My uncle who is a children’s dentist has noticed that kids who eat los of the citrus candies (sweettarts pixie sticks) are wearing out their enamel as well.
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Post by kerrynz on Mar 21, 2007 19:44:53 GMT -5
Hi Such a lovely surprise to hear from a Fellow Aussie Congratulations for finding this board. You will maybe feel like the rest of us, it’s like coming home. This is a great help in the Walk of HFI Just wanted to say welcome, the others will tell you I’m not a very regular poster but check in quiet often. I’m wondering what diet you follow and do you have any Australian products or tricks we would be keen to hear. Pixy sticks and sweetarts difficult to get here. Belinda just put me onto a source there is 4 shops in sydney But they because of lack of support are discontinuing pixy sticks you can at the moment get sweetarts. Just ring Ph: 02 9439 3355 susan greenbank Sugarfix Artarmon NSW sydney they post it out and its easy. Can any one tell me what maltitol is can we use it  ? Cause they have a kitkat choc wafer type thing as well its only good in the milk choc version if maltitol is ok? If you look back over the posts in the last month or so you’ll see there is another woman Belinda in Sydney and myself, so we are getting up in the numbers LOL… But Tammy and Fred, are the ones who keep us all sane. Regards Kerryn |
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Post by Tammy on Mar 22, 2007 0:19:31 GMT -5
The best source we have for sugars and sugar substitutes are found here: www.bu.edu/aldolase/HFI/treatment/sugar_table.htmIt is Dr. Tolan's site at Boston U. He lists Maltitol as "tolerated depending on purity". Again, as I've said so many times, I can only answer by Regina. Regina eats it daily. She has maltitol in the SF chocolate she eats everynight before bed. She only has a small piece each night. (usually a couple of choc-covered pretzels from gertrude hawks) It doesn't have any affect on her. They do warn people that too much can have a laxative affect on some people whether HFI or not. With Easter coming, Regina's bound to really over-do it that day. Just like any other kid. The Easter Bunny is never very smart. He always gets so excited at all the easter shapes at the local choc store that he fills Regina's basket way too full. (It keeps for months in the fridge) Stupid rabbit. Tammy |
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lisa
Full Member
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Post by lisa on Mar 22, 2007 9:07:48 GMT -5
We have also found gummy bears and twizzlers red licorice that are sweetened with maltitol and seem to be OK. Nate doesn't ever have too many though, so I'm not sure whether a large quantity would have a different response.
Trident Splash gum is also flavored with maltitol (vanilla peppermint flavor is what we got).
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lisa
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Post by lisa on Mar 22, 2007 9:13:58 GMT -5
Sarah, does your dad say that brushing more often would help stop that from happening or that it is inevitable if you eat too much over time? There are days where the only thing I can get Nate to eat are sweet tarts, bread, and water (esp. when sick). Guess I'll be chatting with our dentist, but I would imagine she'll say that more brushing is always better than less. Wonder if the coating they put on kids teeth nowadays would help?
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Post by sarahk on Mar 23, 2007 11:22:01 GMT -5
Brushing will help, especially if done right after eating the candies. Bread isn't as safe as most people think, unlike candy (SweetTarts) which dissolves quicker in the mouth, the bread can pack into and stay in the crevasses of the teeth for a long time, promoting decay. Also, years of throwing up isn't good either. I forgot to ask about the coating--I'll ask later.
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Post by Elf Laurie on May 3, 2007 5:32:11 GMT -5
Just wanted to toss in my 2 cents about the pixie stix.....
Be careful with them!! lol............some are made with sugar and some are made with dextrose (always check your label).
If you have a store that sells Willie Wonka brand candy, his are safe.
Hope everyone is well.......I know I havent been around (posting) but I do try to read up at least once a week.
Laurie
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Post by colormist on May 3, 2007 11:04:16 GMT -5
Just wanted to toss in my 2 cents about the pixie stix..... Be careful with them!! lol............some are made with sugar and some are made with dextrose (always check your label). If you have a store that sells Willie Wonka brand candy, his are safe. Hope everyone is well.......I know I havent been around (posting) but I do try to read up at least once a week. Laurie I didn't even know there WERE pixie stix not made by Willie Wonka. Good to know. |
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