school and HFI

[mazian]

Hi, I was wondering if anyone has had a problem with conventional schooling. I have had extreme problems with the teachers not understanding the hypo episodes, and not really believing that children can't eat fruit and veg.

She has also had problems with learning in the environment as her blood sugar has not been stable and they can't give her food when she needs it. Now we are on a fructose free diet, maybe things will change, but I am afraid to put her in the situation. She still gets really tired when she has to use her brain and needs extra food when she works, which I am not sure the teachers can cope with. She is 7 years old and not able to insist on getting foods when she needs them as such she was getting sicker and sicker to the point of collapsing. The teachers don't seem to understand even with our Dr team coming to the school. Does anyone have any similar experience.

We are still going through the diagnosis process. She has had a DNA test (not Dr Tolan) which was negative, however, they still believe that she has HFI so we are waiting to find some IV fructose in the world for us to do a fructose load test.

The fructose free diet has made a huge change to our lives. She was given a limited life span last year before we went on the diet, but now they think that the situation has change.

[charlie]

Hi Mazian,
I feel for you, sounds like you have had a tough time but just to let you know there are others of us out there who have been through exactly the same and know exactly how you feel.
It sounds as though your daughter has exactly the same symptoms as Megs at school which is interesting. Our experience however has been completely different, the school have been fantastic with her. When she first started I sent in a diet sheet and was immediately quizzed by the school nurse about who had diagnosed her etc, since then they have worked with me really well, in fact they are the ones who picked up alot of Megs problems with focusing. I don't know how big your daughters school is, ours is tiny with only 80 pupils age 4 to 11 in the whole school so that means more individual attention. I'm not sure what you can give your daughter as I see in another post you mentioned lactose intolerance too but I send Megs in with extra milk each day, a snack sandwich as well as her lunch box which they all have. If the teachers notice her flagging they tell her to have her milk or sandwich and sometimes if she feels she needs it she has started to get it herself. If she is really struggling and completely "zones out" they send her to the book corner to chill. I think you maybe need to go in with a copy of the diet, if you message me your email I can send you the English version, Fred has the australian one and sit down with them and explain what is going on then maybe they can form a plan with you to help her.
Hopefully though, by eliminating fructose completely things will solve and she will cope well. It will take a long time to get the hang of all the little bits where fructose hides so keep the diet really simple and focus on the safe foods she enjoys, Megs will eat the same thing for days. We also haven't made it a huge deal as well so she doesn't feel she is missing out, it's just a normal way of eating to her. Watch out, she may have mini reactions while you are getting used to the diet and you'll suddenly realise you missed a minute tinsiest bit of fructose or sugar that crept in somewhere. If she does go back to safe and simple and build up again.
Good luck, keep in touch, you are in the best place now.
Regards
Charlie
Member of the PhD club in HFI