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Post by charlie on Feb 12, 2009 16:26:00 GMT -5
Hi all, I'm struggling big time and I don't have the condition. Now I have my new system I have had a chance to sit and read old posts and would like to refer back to something Colormist started in 07 about her dislike of food and eating and meal times etc. I dread meal times at the moment, what to cook especially pack lunches for school, I dread going out for a meal with Megan as to what may be available for her, or sending to a friends for the day. People ask what she can have but as has been shown in other posts folks ideas of what has fructose in it is very variable. I don't want to become a hermit but at the moment we are close to that point. What is that teaching Megs? All I seem to do is worry about food, ingredients, symptoms to the point of obsessively worrying and researching every little symptom. How do other parents who don't have the disorder themselves cope and how are folks in general feeling about food, does it get better or is that it??? This isn't self pity but it is good to know other angles. Charlie  |
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Post by misty1 on Feb 12, 2009 19:27:34 GMT -5
Hi , I myself am still struggling with this whole condition I am dfi but also have other issues with egg, milk meat hormones etc. Once I realized there isn't much I can do about this problem and focused on what I could eat and NOt what I couldn't things got better . As a parent I also know struggles with children as I have a daughter who is 15 and has anxiety disorder and a eating disorder you just want them better and I know for me became almost obsessed with looking for a new book to read or a new dr or counselor or just someone to fix this problem. Food is so hard because you have to eat and then to have issues with it what a struggle. My advice focus on what she can eat.Plan her menu weekly so you don't have to constantly think about it don't worry about what other people think know that you are doing what is right for your child.
I also know for me it helped eating the same things for a week before I introduced something new becasue sometimes my symptoms didn;t show up right away for example I ate peanut butter sandwhich every day for breakfast and chicken and rice for lunch and chicken and potatoes for supper then the next week I would eat the same except maybe try celery or something like that. I hope that helps. My heart goes out to you.
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Post by Tammy on Feb 12, 2009 21:38:00 GMT -5
Charlie,
As a non-HFI mother of an HFI child, I can truthfully say it definitely DOES get better.
As you learn more and more as time goes by of the foods that are safely eaten, you can relax more because you become more certain of yourself. You'll learn that if you're not sure, then it's just better and safer to just say no and pick something you are sure of. This also applies to eating out, and eating at others houses.
When someone asks what Regina can have, I always ask what they are having. Then I either make suggestions, like leave one chicken breast out of the sauce, etc, and most people are more than willing to accommodate. If it just isn't possible, like say a wedding that is catered, then we just take a little microwavable plate of food along.
When at a restaurant, ASK. If all else fails, I just get a plain burger and fries for her.
As she gets older, and realizes that she feels better and doesn't get sick she will help. And you don't have to feel guilty because she can't have something. Like the others said, focus on what she can have. And make it fun anyway. As an example, we go out and get ice cream cones. We take the dogs along. Regina gets a diet soda, a bag of chips, and an ice cream cone that she feeds to her dogs. She loves it. And you should see the people laugh behind their hands as they are watching this little girl feed her cone to the dogs while the parents aren't really paying attention ( or so they think) We always come home laughing, we have fun, and Regina also enjoys the outing even though she doesn't eat ice cream until we get home and she gets "her" kind.
When she goes to a friends house, she always takes her own snacks along. I always just send the whole bag, that way they can all share the same things, and it's fun for all. If it's something big, like a party, then I ask ahead and do my best to match her food to what they are having and just take hers along. And if it doesn't match - Oh well, she still enjoys whatever I do take.
What you want to teach her is that it's ok to only eat what makes her feel good. It's ok to say NO to something that will make her sick. And if she isn't sure, than to always ask before putting it in her mouth. When Regina was very little, I even went so far as to pin a little note on her shirt that said "Please do not feed me as I am on a very special diet", and then let her run around with the other kids.
And one very big thing to remember is - accidents happen. We don't want them to, but they do. And when they do, don't feel all guilty over it. Turn it around to teach her that is WHY she needs to only eat what she can.
As for daily cooking, you'll probably discover that eating the same foods over and over is ok with Megs. Don't feel guilty because it isn't exciting. Even non-HFI kids like the same foods. How many kids would live on hot dogs or PB sandwiches if they could. So HFI kids are actually lucky in that they CAN live only on the foods they like. You'll be more tired of making the same things then she will be eating them.
Relax. It gets much easier as you learn and feel more confident.
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millan
Junior Member
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Post by millan on Feb 13, 2009 4:44:33 GMT -5
I haven't thought about it like that either, but it's just as Fred said: I don't care what other people eat, all I care about is what I can eat. ;D To be fair, this answer would probably be different if it were from my mother, who's the one that struggled during my childhood. I know that when she finally had a diagnosis for me she was relieved, but when she tried to follow the list she was given there were still plenty of things she weren't sure about. In my case, she mostly listened to me. I detested all sweet things and if I didn't like it, I wasn't served it. (From the time I was 6-7 years old, I was often the one who chose what our dinner should be. )  It should get better. With time your list of what she can eat will grow and you (and Megan) will learn it by heart. Concentrate on that list right now. Only pick things that are safe when talking to other people. Remember, the plainer the food, the easier it will be to find something for her - not to mention the easer it will be for her friends. If it really feels overwhelming right now - be a hermit - if just for a week or two. And then slowly start visiting again. Any time you are at a restaurant, fast-food-place or whatever, even if Megan isn't around, look at the menu with "HFI-eyes" and consider if they have anything safe for her. When ordering your own food, you could always throw in a question about the contents of something else that looks promising. That way you know in advance if it's safe or not and slowly you'll hopefully have some places you know are safe to eat at. That way, if you're somewhere the staff won't help you or say they can't modify a meal, simply explain that either they help or you can't eat there (and then you have options on where to go instead). |
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Post by colormist on Feb 13, 2009 8:36:52 GMT -5
I'm going to reiterate the "eating the same thing all the time" message. I think I had a peanut butter sandwich (toasted) every day for lunch for 6 months in a row this year. For most people, that would make them never want to eat peanut butter again. I still eat it because it's yummy and easy to fix at work.
Restaurants are very accommodating (I just don't like making a fuss). It's easier on you (and them) if the waitress you have is a native English speaker (I'm still trying to figure out how to express to the Japanese restaurant--yes, I keep trying--to not put ginger sauce on my tataki). And you don't have to explain everything. Instead of having them come up with a solution--find one of your own: plain bowl of rice, plain chicken breast, bun-less hamburger, potato crisps.
And when Megan gets older, she'll be able to better distinguish what's healthy for her and what's not.
Tammy's idea about the note on the shirt is excellent. You could also get shirts printed up with that message. When she gets older, more people will become familiar with her diet and bring presents like plain potato crisps and pixy stix instead of cake and chocolates. It's not about having people decipher what foods have sugar in them or not, but rather you telling people exactly what she can eat. It's not hard, it's just not convenient.
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Post by charlie on Feb 13, 2009 13:40:10 GMT -5
Hey, thanks everyone, this does help.
It's funny our concept of food these days that it has to be varied and exciting, colourful and full of 5 a day ( at least in England) portions of fruit and veg. As you have all said Megs is happy with plain food and the same thing, It is me who tries to give her variety. It doesn't help at the moment that that she can't have glucose until they have tested her on that problem.
I liken her diet here to a bit pre-war when it was more plain seasonal food, homemade broths and casseroles.
I am amazed how sensible megs is and she does always check food and never fusses if she can't have anything she can't, kids are so much more sensible than we are.
I did nearly burst into tears at school today, the teacher sent them all home with a treat today for some reason and everyone was trooping out with milky bar chocolate, then out came with Megs with a packet of plain crisps (chips), this is the first time this has happened, halleluhiah, the message has got through.
I suppose as her mother there is also the guilt that this is my fault - well my genes fault - as well her fathers but as he buggered off before he could shoulder any of the blame so I have to cope with it all. But that is enough of that, she has the condition, get on with it, it could be worse. If we are sensible about food she remains healthy.
What a great idea about Tshirts, at the moment I don't leave her at a party although she is very good at saying no but I must learn to do so, if only to use it as a chance to get a bit of time to myself occasionally.
thanks everyone, the support is so great from here cos no other bugger seems to want to have the hassle of helping with this,
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Post by Tammy on Feb 13, 2009 15:03:37 GMT -5
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Post by charlie on Feb 13, 2009 15:39:04 GMT -5
Oh Tammy, that is such a wonderful post, thank you for pointing us to it. wow, it says it all. I must say having read alot of your posts, and I remember you from your posts when I joined the board the first time when the diagnosis was originally suggested I have nothing but admiration for the way you care for Regina. She is very lucky to have such a great mum.
I also have you, and other older members on this board, to thank for making our life so much easier, you can short cut us through so many processes. It means we can make alot less mistakes and our children have a chance to be so much healthier.
We musn't dwell on guilt, the what ifs and the whys, otherwise we lose the precious time we have. It does help to voice it though, we are only human at the end of the day.
God bless you.
Charlie
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Post by charlie on Feb 22, 2009 13:35:33 GMT -5
Ok, we took a deep breath and ate out this weekend twice. Yesterday we took Dad out for lunch to a restaurant. I looked at the menu and there was nothing outright that Megs could have but they were very accomodating. They had chips but they had some odd coating and they had fish which megs likes but in cider batter but they said that is OK they could grill her some fish and do plain potatoes with a bit of butter on them. I had said she couldn't have any sugar or vegetables so no sauces etc. Well the plate came with grilled fish and unfortunately new potatoes and - peas!!! They said the plate didn't look right without the peas on it. Never mind I said and scraped them off onto my plate and didn't look while she ate the new potatoes thinking at this time of year they won't be too rich. She had a slightly wobbly afternoon but not too bad so far.
This afternoon she went to a birthday party and I just packed up her own box for her to eat, the hosts were more than happy and she calmly explained to her mates why she couldn't have their food, she said her tummy doesn't like sugar and makes her sick. What am I worried about!!!!
Going back to something Misty1 said earlier about sticking to the same food, I had forgotten this is how I first narrowed things down to this problem and will use it again now. I did an elimination diet as it was so confusing what was setting off so she lived age 2 on chicken and rice for a week then slowly I added new foods back in. She was OK on rice, potato and wheat but the minute I added I think carrots was the first vegetable she was sick so we took her back to basic again then added another vegetable after 3 days and she had tummy ache or diarhea each time. That was when they realised there may be a link to fructose. It was a very useful diagnostic process.
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