Hi, new HFImom

[marleen]

Hi there, I'm reading here for a while now (read 5 months). Why register myself? Today the pediatrician told me my daughter (15 months) has HFI. The first time we heard of HFI was 5 months ago. From then we have tried to give my daughter a HFI-save diet. Since then her health is much better. Her sleep has improved and that of the rest of the family. And she grows and gains weight.
With the introduction of solid food, we noticed that my girl was different than my other daughter (and every other child). She refused everything that tasted sweet (still does). And throwed everything out. She lived from, to the start of the HFI-save diet, breastmilk. Still that is what helps her through the rough days when she, by accident, eats something with fructose of suger.

The most difficult time was when she had earpain. She had to take amoxicilline with fructose and sorbitol. Wrong! And my daughter had to pay for that dissicion. After 2 dosises she got amoxicilline without the sorbitol. This was okay, but not the solution. Still there was fructose in there. But we managed to get through the earpain. How do you do that with medication?

What are we going to do in the near future? I have to write down for 3 days everything my daughter eats (in grams and liters). Then the dietiste will make a calculation to she what dosis of fructose my girl can handle. Maybe whe do it alright right now, or there must be cut more food out of here diet. Time will tell. Over 8 weeks will know. Also some bloodresults will be there.
I'll keep you posted.

Bye, Marleen

[charlie]

Hi Marleen,
nice to meet you on here. wow, sounds like you are very lucky to have found a pediatrician at such an early age for many it takes years of other tests first to eliminate well known conditions. Sounds like you are very switched on which is good because you will need to follow your instincts alot with this in the early days.

A good food diary is very helpful, I did one for my daughter but I also added in sleep and poos and mood as these were all affected. Beware of hidden fructose. To start with you are best to do a completely fructose (well as free as is possible) diet for a long time to help her system settle any irritation so start with plain meats, fish, dairy if she is ok with that, white rice, old potatoes and white flour products if OK with wheat. Use no veg, no fruit and no sugars or substitutes. as she gets better you could try glucose but leave that for now as she is only little (my daughter is not good on glucose either)

You mentioned earpain - Megs gets alot of earache for some reason when on a food reaction.

Is it definately HFI or could it be fructose malabsorbtion, with one it is always a limited diet, the other may improve.

Good luck, if you want a copy of the british diet advice send me your email via a PM and I'll send you ours.

Take care
Charlie

[marleen]

Hi Charlie,

Is it really HFI or is it FM? The doctor told us it is HFI. Every sign is pointing in that directing. Hopefully DNA-test will support that. But as I learned here sometimes they do'nt find it by DNA-testing. Future will tell us what it will be. I think I do'nt mind if they tell me in the future that it is FM.

And yes, we are very lucky with the pediatrician. He really went on a search to find out what was wrong with my daughter. He is head of the pediatrician department, and we got him after complaints of us during the 5 days stay of my daughter in the hospital. (I was the cause for the fact that my daughter was not growing. My breastmilk was no good anymore. 5 Whole days they talked in to me that I was the cause. But I couldn't give a bottle of milk. My daughter refussed that and eating solids foods too. Now I know why, we started with sweet fruits and vegetables! Strange bloodresults don't come from a lack of breastmilk. By then my husband and I wanted a good talk with the doctors, to know what the real thing was they were searching for. They could not tell us.)
They then dicided that he was the one that was going to do this case himself. That was our luck. Now we are in an other hospital where the specialist is stationed on metabolic diseases.

Thank you for your advise on the food diary and the menu. I send you a PM. I'm interesting in the britisch diet advice. I already had found the lists of the Boston University. But everthing is helpfull.
I'm also very thankfull for this board. It has been a true information source.

Bye! I'll keep you all posted.

[julienc]

Hi Marlene,

I'm glad you found this board! It very well could be HFI if your daughter is refusing all things sweet. My mom tells me that my brother and I were the same way growing up, and she fortunately had the good sense to not force anything on us. It's also a good sign that she improves when you restrict fructose.

It sounds like you're on the right track and in good hands with your doc! Keep us posted.

-Julie