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Sisters with HFI

Message: From birth our mother knew something was wrong when we would not accept anything sweet or would throw up if something sweet was swollowed. At this time there was no name for our condition so we went through childhood hating being different. I was 50 years old when we first heard of HIF and what a releif to know we weren't crazy! Both of us do not like anything that taste sweet even if it is artificially sweentened. I wonder if there are others who experience this.

From: dove1 bpparker388@aolcome

7 September 2002 12:00 PM


Childrens antibiotics

Message: My biggest problem is antibiotics. Almost every one that is for children contains fructose, sucrose, or sorbitol... Thank goodness she has not had to take antibiotics often. Now we have resorted to grinding up pills and putting it in Sugar Free Chocolate pudding. Has anyone else had this problem?

From: winky mjelmer@optonline.net

6 September 2002 9:31 AM


new to forum

Message: My daughter is almost 8 now and was diagnosed at 2. She is healthy but entering public school has been difficult. They're are all those cupcake parties. I give the teacher each year Smarties and pixie sticks for those times when I'm not there. If there is a big party (like Christmas) I send in Sugar Free Chocolate pudding that I've made and put it in the teacher's refrigerator. Still, there are moments when my daughter cries because she doesn't want to be so "different". I am going to get her a medic alert bracelet so that the teachers and parents will know that this is serious and not let her have a "little taste" of something.

From: Winky mjelmer@optonline.net

6 September 2002 9:20 AM


Toddler with HFI

Message: My son is 2 1/2 and was diagnosed with HFI at 7 months. He just has no interest in eating and it is a daily struggle to get him to eat. Has anyone with a toddler ever experienced this problem and what did they do to resolve it. I realize that the diet is so limited and I try to make food as interesting as possible, but he really gets bored with eating pasta, rice and potatoes. Any suggestions?

From: jgr

5 September 2002 8:48 PM


Cookies and Cakes

Message: My girlfriend has found a source for dextrose! It is at a company that sells the sugar for brew your own beer customers. Check out www.onlinesu.com/byob. By the way, beer consists of dextrose if you didn't get that. I had my first cookie and lemon cake for my birthday this year when I turned 22!

From: kc3hfi WaterskiUS@yahoo.com

24 January 2002 12:45 PM





16 December 2001 5:41 PM


Middle-Age HFI

Message: I am a 48 year old female diagnosed with HFI about 40 years ago. I can identify with many of the e-mails you have sent. As a middle age person I was wondering if any of you have had problems with aging, and your liver or kidneys? I'm also interested to find out if the are any special condiderations in menopause? Also I take some great nutritional supplements which have been a great help. Please let me know if your take any special supplements. I originall was from Chicago, Ill., but now live in San Diego CA. Thanks, Jayne

From: conway jconway@palomar.edu

7 September 2001 6:12 PM



Message: i am 14 years old. i found out i had HFI when i was 11 years old. it is good to know there are other people out there that have it too. i have never met anyone else who has this. i think it sucks but thats just how god made me.

From: jerbearisapimp jerbearisapimp@aol.com

13 August 2001 12:39 PM



Message: My daugther, 10 and 1/2 years was hfi diagnosed 6 years ago. In this time we decided to let her know that every sweet taste were related to poisonon food. It is time to tell her about the sweeteners and let her decide if she will eat the ice cream like her friends. Does someone knows what sort of sweetners is allowed to hfi people? Sorbitol is not allowed! What's about manitol?and xilitol? And NutraSweet? and saccharin? and sodic saccharin? Thank you for any attention to this matter. F‡bio

From: fabio frc@alternex.com.br

22 May 2001 1:48 PM


Chronic Ear Infections

Message: I was just wondering if there were any other HFI patients that are having chronic ear infections. I have two daughters with HFI and both have had to have tubes put in their ears for the ear infections. Please let me know if any one else out there is having ear problems.

From: Debbie jdkossin@cde.com

6 April 2000 11:22 PM


Fructose in food

Message: If you want more information about the quantities of fructose in food. Visit this web site: http://www.nal.usda.gov/fnic/foodcomp/Data/index.html and select sugar content of selected food Bye.

From: chriss christophe_tournayre@yahoo.fr

16 January 2000 12:08 AM


Does anyone have more than one child with HFI?

Message: I have two girls ages 6 years and 1 year old, both have been diagnosised with the HFI. I was wondering if there is any one else who has more then one child affected by this.

From: Debbie kossin jdkossin@cde.com

1 December 1999 9:33 PM


Living well with HFI

Message: Hi. I have had HFI all my life but was not diagnosed until I was 12 years old. I am now 21 and am able to keep it under control and rarely get sick anymore. I would be more then happy to talk to anyone who wants to know more info about HFI and dealing with it. I wanted to know if anyone else with HFI has a strong desire to eat Sweetarts or Pixie sticks? I crave them all the time. They only contain Dextrose which is ok for people with HFI to have. Something to note: They contain citric acid and due to my over consumption of the candy I have lost the majority of my tooth enamal. My father is a dentist and since then I have been told not to eat them anymore...though I sneak a few every now and then. One of my favorite inventions is using pixie sticks and plain yogurt to make popsicles! I just mix them together and free them in popsicle modls and wala, I finally am able to have a popsicle like all the other kids.

From: Shana sandm@101freeway.com

22 November 1999 4:42 PM


adult females

Message: I have been contacted by a female adult with HFI who would like to correspond with other female adults who have HFI. If you are interested please let me know.

From: lborows lisacatw@bitstorm.net

18 November 1999 10:34 PM


How Did You Feel?

Message: I am so thankful for this support group! My son has HFI. He was diagnosed at 5 months. He is now 11 months old. He is my first child and I am so frightened that he will become sick again, that it scares me to see him around other children or with a babysitter. I am afraid that people around him will forget and let him taste something, and think "a little won't hurt". Did anyone else feel this way?

From: dwshbr sblake@nbnet.nb.ca

28 October 1999 11:33 PM


Cholesterol and Development

Message: My son has high cholesterol. Does anyone else with HFI have that problem? Also he was very late learning how to sit(8 mos), crawl(12 mos) and walk(18 mos). Has anyone else experienced this?

From: lborows lisacatw@bitstorm.net

28 October 1999 4:01 PM


Support Group Response

Message: Hi All! Since the support group started I have received emails from 5 others with HFI. Yes, there are others out there! If you have been diagnosed I urge you to get a password for this site.

From: lborows lisacatw@bitstorm.net

28 October 1999 3:57 PM


Sorbitol Warning

Message: I wanted to let everyone know that Sorbitol is used in many post-surgical IV's. Before anyone with HFI has surgery you must be sure that the IV does not contain Sorbitol. People have died from this! (This info was given to me by Dr. Tolan)

From: lborows lisacatw@bitstorm.net

28 October 1999 3:53 PM


Foods and recipes

Message: Hi, My son has HFI. He was diagnosed at 13 months old and is now 8. I would love to share food and recipe ideas with anyone. We have found special items, by brand, that have no sugar! For example: Sweet Tarts Candy; Pixie Stix; Lykes Grill Franks in the 20 count package only; Breyers No Sugar Added Ice Cream; Glitter Flakes by Wilton Cake Decorating; Albertson's brand Sugar Free Vanilla, Lemon and Coffee Yogurt; Rice A Roni Rice Pilaf Flavor; Hamburger Helper Fettucini Alfredo. I also have a recipe for "Lemon Meringue Pie". I would love to keep this support group very active, so everyone please contribute!

From: lborows lisacatw@bitstorm.net

19 October 1999 5:38 PM


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