New Member, This is my story of HFI.

[Nicole]

Hi Everyone. I'm a new member and just found this website, pretty cool. I was also born with HFI. I'm 38 years old now and doing fine. Of course there is always little bumps in the road every now and then. They say that reading helps your mind to stay sharp. Not a problem with a person having HFI and going to the grocery store. I get plenty of reading time..LOL When I was born the Dr.s had no idea what was wrong. My heart stopped and my veins collapsed. I was in and out of hospitals until I was 8 months old. They ran all kinds of test and had an idea of what I had, fianally. But they told my parents that I wouldn't make it and that they should just sign me over to them so I can help other children. But in the middle of the night another doctor called my parents and told me that if they want to keep me alive that they should come right now and take me to a warm climate as fast as they can. So that is how I ended up in Florida. I know this is hard to beleive but it is a true story. Of course this is the short version. Every time someone offers me sugar I tell them no thank you. The first question is always "Are you diabetic". No one I have come in contact with has ever heard of HFI. So It is really nice to find a site like this. Sorry for the long story.

Nicole

[nicole]

Hi, Fred. No I don't have any circulation problems. I do have about 8 scars from what they called as cut downs, from the tubes they place trew out my body. It looks like I had a wild child hood with all the stich marks. I do have a question. I'm alittle confused with the whole Dextrose thing. I was told to stay away from Dextrose also. Are you able to have it with no problems.

Nicole

[Tammy]

Hi Nicole,
Welcome. Can I ask how you found us? It's always good to hear what works, and where.

My daughter has HFI. She does just fine on dextrose. She eats it quite often.

You have a very interesting story. Sometime when you have time, I always like to read the long versions. What area were you from, before the quick trip to Fla? Speaking from a mothers point of view, You must have special parents. It must have been hard on them. But why did the Dr suggest a warm climate? A different problem, just to get you away from the drs where you were, or just because he didn't know the climate had no effect on HFI?

Sure glad you found your way here
Tammy

[colormist]

Hi Nicole!
Welcome to the group. We're pretty good super-sleuthing HFIers and tend to learn from each other's mistakes. We're always trying to find trends in our lifestyles and bodily issues we have.

Your story is pretty wild. I hear all these horror stories about kids with HFI and I wonder how I managed to sneak under the radar all these years.

LOL@Tammy -- I just saw your status. You are God. LOL

Anyway, we tend to go by Dr. Tolans website and what we generally have experienced with HFI. Lots of us crave dextrose. I don't know if you will if you've never had it before. It kind of melts warmly in your mouth and makes you very happy. Aside from buying it bulk, you can find it in pixy stix. I would recommend others, but this might be the easiest start for you.

(Somebody correct me if I'm wrong on this) Dextrose is glucose. Your liver produces glucose from the food you eat. Glucose is in all major dietary carbs. If you've consumed corn, rice, wheat, or potatoes, you're eating glucose. So, you can eat certain candies (we have a candy thread that I'm currently obsessed with) that are made with dextrose as a sweetener. You can also buy dextrose in bulk from online stores and make your own cookies, cakes, muffins, etc.

[Tammy]

Ahhhhhh geezzzzz Laura, Just means I have the biggest mouth. LOL.
Tammy

[nicole]

Thank you everyone.
Hey Colormist. When did you find out that you had HFI?

[colormist]

September of 2006 was my diagnosis. I think I found out in late spring that year. It took a while to get a DX. Like most people here, they didn't believe that I actually had it. At least they played along to humor me.

Before that my friends thought I had some mental problem. Like I was traumatized by sugar at an early age. They didn't understand why I'd eat pixy stix and gobstoppers like they were going out of style, but wouldn't touch cake, muffins, or cookies.

[julienc]

Welcome Nicole!

I'm so glad you found this site! I'm with Tammy - I'd love to hear the long version of your story when/if you have the time. When did you finally get a diagnosis? Did your parents just figure out over time not to give you sugar? Do you have any siblings with HFI?

My story is very similar to Colormist's. My brother and I both flew under the radar, going through life not eating anything sweet. I was just diagnosed this past year at age 30 after stumbling on HFI on the internet. I knew instantly that I had it after reading the symptoms and the stories of others. The doctors didn't believe it until the DNA tests came back showing the mutations.

Anyway, welcome again.

Oh, and I think I read somewhere that Dextrose is Glucose in powdered form, and Glucose is typically in a syrup form. Chemically, though, they're the same thing.

[nicole]

OK , The other half of my story. They did the normal blood test and a closed biopsy. Then they did the intravenous sugar test. I looked like some alien with all the scars from were they placed the tubes from what they called cut downs. I have about 8 places with stich marks. By this time my parents insurance called them to tell them that they have to drop them, the bills are to much. So now even more frustrated and going out of their minds the head doctor played on this and told my parents that if they sign some forms the hospital would take over the medical expenses. Not really paying attention to what they were signing, my parents didn't realise that they just signed me over to the hospital for reseach. I was about 8 months old and still so weak and unsteady. My weight was only 6 1/2 pounds and I looked like a sheleton. The head idiot doctor said to my mom that he wanted to do a open biopsy on me that coming monday. My mother freaked out and said "you are not doing that on my daughter, she will die". His responds was"So what she will be saving other children and you have no choice now, you signed the papers". That is when my parents found out what they had done. Well the other doctors did not agree with this jerk. So that night my parents received a phone call from another doctor telling them that if they wanted any hope for me, to come to the hospital right now and get as far away from here and as fast as they could. Of course before he finished the conversation my parants flew to the hospital, threw a blanket over me and ran like hell. The next day they put the house up for sale in New Jersey, because the doctor told them that I needed a warm climate because I was so frail that the next cold I would get would do me in. The house sold in two days. We came down to Florida to look for a place to live. The night before they came down the head doctor called my parents up and told them that they have no right to take me. Of course my father being Italian, had some choice words for that doctor and he never called again. We found a doctor in Florida that new about HFI. My mother somehow knew all along that I needed to stay away from sugar, she claims she had a dream that told her the answer. I like being a pain to them by saying I knew you never loved me you tryed to sell me...JUST KIDDING WITH THEM.... OK WAKE UP I told you it was long...LOL

[julienc]

Wow Nicole. Fascinating!!!! Your poor parents!!! What a horrible doctor...thank goodness some of the other docs didn't agree with him.

All I can really say is "WOW".

Thanks so much for sharing.

[Hilda]

Hi Nicole,

WOW your story is very similar to mine, I also have scars from cuts made buy doctors to take blood and I also was put to all tests possible.. My parenst also had to take me from the 1st hospital i was in or i would have died.. amazing how these things happen! I´m portuguese and like italians we are very strong and love to argue.. no doctor stopped my parents! LOL

Luckly I was taken to the Childrens' hospital in Boston were a great Dr. Carson knew about HFI and treated me..
It´s was nice to hear your story.. keep in touch!

[nicole]

Hi, Hilda.
How old were you when they figured out what it was? So your parents flew you over to the US from Portugal? Don't you just love doctors that have no idea and want to use you as a guinea pig..lol

Nicole

[Hilda]

Hi Nicole,

Sorry, i left out some details.. I was born in the USA at a local hospital in Mass. a week later my parents took me from that hospital to the boston childrens and about 3 to 6 months later they discovered i had HFI.. I moved to Portugal when I was 12 because my parents wanted to go back to their home country, it has nothig to do with HFI.

P.S - I was definitly used as a guinea pig, unfortunatly.. until i was about 11/12 years old i was very scared of doctors and cried everytime i went to a hospital or clinic or even if i saw anyone dressed in white.. traumatized!

But now i´m doing great, like everyone on here we just need to avoid sugar and everythings OK..

Keep in touch!

[gemmellee4]

Hi there, I'm 31 from Scotland and found out I had HFI about two years ago. I have never eaten sweet things since my wonderful Mother figured out pretty quickly that they made me sick! I was breast fed and went straight onto Cow's milk because the formula made me projectile vomit! I was lucky that I was the third child in my family as my Mum didn't bother listening to Doctors and just did her own thing with feeding me.

My whole life I have been the "odd one out" - none of my brothers or sisters have HFI and no doctor could explain why sugar made me sick. In fact most people thought it was something I would grow out of and even my parents couldn't understand why I hated veg like carrots and peas so much.

I found an article in a Sunday paper when I was about 10 years old that was about how much sugar was in vegetables and after showing it to my parents they relented and let me off with the carrots and peas!

I have had various stomach problems over the years and was eventually diagnosed with IBS. As an adult I was able to be more careful about the foods I eat and prepare all my own meals as I don't trust ready meals.

My saviour in recent years has been my best friend who is a Paediatrician and was on a training course two years ago and texcted me to save she knew what was wrong with me (other than the obvious!!!LOL). I was on the net that night and could have cried to finally have the answers I had been looking for! My Mum DID cry when I told her because she realised how lucky I had been that she had not forced formula or sweet foods on me!

Thankfully I have two children who are HFI free and an understanding husband who puts tubs of Pringles in my Christmas stocking so I don't feel left out! It's great to read other people's stories on here, I feel almost normal when I hear how others have suffered! My only concern now is that my brother and sisters could be carriers and as none of them have children yet then I don't know. At least I know where to get the information now if they ever have to face this! Also it seems Doctors in this country are slowly starting to recognise the condition which is great news for newborns in the future!

[Tammy]

Hi and welcome to the board.
Your story sounds a lot like others on here.
It's nice you finally found a place to "fit in".
Hope we hear more from you.
Tammy

[julienc]

Welcome welcome!!!

I was struck by this part of your story:

Nov 25, 2008 6:25:10 GMT -5 gemmellee4 said:

My saviour in recent years has been my best friend who is a Paediatrician and was on a training course two years ago and texcted me to save she knew what was wrong with me (other than the obvious!!!LOL). I was on the net that night and could have cried to finally have the answers I had been looking for! My Mum DID cry when I told her because she realised how lucky I had been that she had not forced formula or sweet foods on me!

My good friend's father is a pediatrician, and he is the one who tipped me off on HFI as well. He didn't actually call it HFI, but he clued me into the "fructose" part of my intolerance. I then went to the internet and was almost in tears reading the symptoms and description of HFI.

If only all pediatricians could be so educated. They really are the gatekeepers to diagnosing the condition.

So glad you found this site!!