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Post by Maybe I can Help on Feb 28, 2006 19:08:03 GMT -5
Hello,
It sounds like you have quite a bit going on. I am 27 years old and have had HFI my whole life. Unfortunately I was not diagnosed until I was 12 years old - I suffered quite a bit as a child. I personally cannot stand the taste of vanilla, so vanilla yogurt and chocolate drinks would be an absolute no for me. Does your son have a strong ad version to sweet tasting things? I guess not everyone has that, and it has been my protective mechanism.
As a kid for breakfast my mom would always make me hot cereal. My favorite is still Cream of Rice (like for babies). I put a little butter on top and it's delicious. I also like oatmeal and cream of what - all plain, not with flavors in them. I also eat eggs. For cold cereals I eat shredded wheat (plain).
I am also a teacher, and I would hope that your child's teacher would be very understanding of the situation and helpful. School was never really a problem for me, it was birthday parties and other social functions that got me sick.
One of my favorite foods is Mac and Cheese - does he like that? I take easy mac to work and zap it in the microwave - easy.
Let me know if I can answer any specific questions. I am not a doctor, but I do have lots of experience living with HFI. I was diagnosed via DNA testing.
Sincerely,
Sarah :)
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Post by sapphicode on Feb 28, 2006 22:58:15 GMT -5
hi!
i can totally sympathize with coley! it doesn't matter sometimes what i eat...nerves make me gag.
i have to be super vigilant when i'm going through extra stress to have the blandest of the bland...sometimes that's all i have an appetite for. my job changes from day to day and the most stressful day is sunday (directing a church choir). just dealing with the different personalities keeps me up the night before feeling sick. and when it's all over, i feel better, and i have my appetite back. the whole intolerance thing has given me a very weak stomach and very strong gag reflex. so gross things and stressful situations set it off too.
the same thing happened when i was a kid. my parents were really worried that i was anorexic because i wouldn't eat much. you are so lucky you know what is going on, and that you cared enough to find out...not that my parents didn't care, but they didn't go to the lengths to find out what was really wrong. i just got allergy shots. but stress would always aggrevate things. when coley gets into a routine, he'll feel so much better.
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Post by kerrynz on Mar 1, 2006 0:33:42 GMT -5
Mmmmm ... I'm only in the same boat but i wonder if you stop the vanilla and chocalte and every thing thats not real food for now, narrow it down to the plainest of cheese forget trying for flavour.
When Zanoah was given something in her milk she there after refused milk for a week i change the time, and the cup and put her in front of a video to disguise the fact i was tricking her into drinking it. But the fact remains she won't eat or drink anything flavoured, go back to the basics. If she has a bad experience with something like milk she refuses everything connected to it.
For preschool she gets for morning tea puff pastry i make useing some milk splashed on the top and sprinkled with seasamee seeds. nothing like cinamon. Lunch is Mac and cheese arvo tea is a cracker.
Aspartane or any soft drink i would bury for a month or more, when Z tried sugar free lemonade it was ok for HFI. She at first refused then i encouraged so she had two mouthfulls. That night she screamed for hours. Next morning i said to her that drink mummy gave you gave you a sore tummy. She went to town telling me off.
I'ts only my thoughts but try to go back to total basic something is setting him off, use just water on plain milk. Chicken and even if he only sniffs it for a week, and that how long i think it will take he will start to trust food, but it will be the slowest week yet for you
Good luck
Kerryn
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laurie
Junior Member
Posts: 67
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Post by laurie on Mar 1, 2006 11:27:27 GMT -5
kristen, trust me, you are not alone!!! hunter may be 7, but i'm going through some of the same things you are. school is really difficult, partly because hunter really does hurt, and partly because he's scared something will happen to him at school and i wont get there in time to help him. this really tugs at a mothers heart strings!! i've been struggling thinking "my kid is just strange", but it seems we have two peas in a pod here...haha.
with all the conflicting information everywhere you turn it starts to feel like you're failing as a mother as well as failing your child. i'm still waiting for my "fairy godmother" to wave her magic wand to make this all go away or somehow make me the total book of knowledge.
it seems like all of our dieticians have different "diets" and different "rights and wrongs", so who do you believe? haha, sorry , sometimes i have to laugh or i'll just go crazy!!!!
you're about a month and a half more into this than i am, so i guess i'm waiting for you to get your "miracle" because i know mine will be a few weeks after that.
ok, back to the dieticians.... mine says smickers all natural peanut butter is ok, stevia is ok and splenda is ok. i have hammered her constantly, made her dig for information, and she still insists they are ok. so what do i do!!?? i mean geez, i feel bad enough knowing that it took them 7 yrs to find this problem, do i keep feeding him that stuff? is it REALLY ok? is it really NOT ok?? i dont know the answers, and it seems that none of our dieticians do either. but always know kristen, i am also feeling your pain and frustration!! i'm at the point now where even if they dont find that hunter also has eosinophilic esophagitis, i'm ready to request that his feeding tube be put back in. hunter is 7 1/2, will be 8 june 4th, is 4'2" and on really good days weighs 48 pounds.
i'll cross my fingers for coley and school. hunter comes home, on the days he actually makes it all day, and is totally wiped out. most of the time he wont "eat", he just kind of munches. he dehydrates at the snap of a finger, so i find myself pushing the liquids more than the food anyways.
i hope and pray things start to get easier for all of us really soon!!!
laurie
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laurie
Junior Member
Posts: 67
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Post by laurie on Mar 1, 2006 11:31:43 GMT -5
haha.............did anyone notice "smickers", it's smuckers all natural peanut butter.
one of the newly grown grey hairs on my head must be affecting my eyesight and ability to spell now too.
laurie
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