School

[laurie]

i guess i'll be the first to post in here being as hunter is 7 1/2.......haha
hunter went back to school this past wednesday. (the first time since the end of august) he did very well.
of course it was hard on me, i had to get up and actually cook him something for lunch, and i was worried sick, but he did great!
i've got to give him credit, he's adjusting to this better than i thought he would. he got to go to the "treat" bucket for good behavior this week, and he picked out little toys, not candy.
he now sees commercials for food on tv and he tells me they aren't safe foods.......haha.
the circus is town here right now and we went last night. i thought it would be very hard on him, and i think it was, but he didn't show it much. i bought him a snowcone (with nothing in it, so it was just shaved ice) but he didn't complain.
i guess this is going to end up being harder on me than it is on him..........of course i haven't had to deal with any parties at school yet, but valentines day is coming up. anyone got any suggestions for me on that to make it special for hunter?

laurie

[Tammy]

Ahhh....My catagory. Mom stuff. lol.
For valentine's day, try making red velvet cupcakes (See recipies) and then making little hearts on them with sugar-free pudding. Just make the pudding with less milk so it gets stiffer. There is also some sugar free candy that you can put on top of them. Sweet tarts, smarties just check them when you but them because I've heard reports that they now contain sugar, but here in my area they are still fine. Maybe made in different plants? Regina used to take valentines with smarties in them instead of lollipops. Actually, there is lollipops out there somewhere, although I don't know where. Regina's pediatrician used to get them for me. Now he gives out stickers so I don't know if they still have them or not.

And this will bring us to Easter. There is a candy store down the road from me. They have sugar-free chocolate that is fine for Regina. I believe they use one of the sugar alcohols (but NOT sorbitol). Regina has always done fine on it as long as she doesn't eat the whole bag at once. She does eat some every day. If you eat too much it'll give even a "normal" person loose bowels. There web site is: www.puritycandy.com/ Just watch out for anything coated. They call it sugar-free, but the item they are coating may not be. They make sugar-free chocolate covered pretzels, peanuts, raisons, etc. But the pretzels themselves contain corn syrup, and I don't allow peanuts, etc. So just get the solid chocolate items.

I've also posted some other ideas for cake decorating under the recipes.

This is definately harder on Mom than it is on the kids. As I've stated before, the hardest one for me is in the summer when we stop for an ice cream cone and she gets a bag of chips and diet soda. She doesn't mind. She'll even ask to stop. But be prepared for all the strange looks as your eating your cone and the pretty little girl (or boy as in your case) is only sitting there with chips. Now, quite often, we take our 2 dogs along and she gets a cone and feeds it to the dogs. She just loves doing this.

Tammy

[yvonne ruggles]

Hello.
I too am a mother with two children with HFI. I usually wake up pretty early on days like Valentines and Easter to make special treats for my kids. I teach at the school they attend. Therefore, it has been pretty easy so far. I always use Bisquick Mix for baking. I usually bake muffins or roll out donut shape cookies for special occassions using Bisquick and Dextrose. My kids always take sweet tarts for the valentine day exchange. I always make sure that the room mom is aware of my kids condition. It has always been great since I make sure they are included in everything.
I wanted to know if any of your children are "petite". My two are both on the lower end of the growth chart.
thanks
yvonne

[yvonne ruggles]

Hello.
I too am a mother with two children with HFI. I usually wake up pretty early on days like Valentines and Easter to make special treats for my kids. I teach at the school they attend. Therefore, it has been pretty easy so far. I always use Bisquick Mix for baking. I usually bake muffins or roll out donut shape cookies for special occassions using Bisquick and Dextrose. My kids always take sweet tarts for the valentine day exchange. I always make sure that the room mom is aware of my kids condition. It has always been great since I make sure they are included in everything.
I wanted to know if any of your children are "petite". My two are both on the lower end of the growth chart.
thanks
yvonne

[Bia]

My children are smaller and thinner than their coetaneous as well, but not too much.
I also cook things for them using dextrose monohidrate i buy at the chemist here in Italy.
It's hard for the mum, it is, but it is harder for the children, believe me, even if they grow up stronger than others. As long as we try not to exclude them from a normal child life, it is ok. Other children oftrn cope very well with this, helping ours not to feel too bad.

[nancyrandall]

My son is almost 6 and we have been on a strict fructose restricted diet since September. We are not sure if he has HFI or other fructose intolerance. He was diagnosed with a breath test. I have noticed that when he gets something he should not we run a cycle. Do others see the same? He starts out by losing bowel control (#1 and #2 with diareah). As he is getting older he has gotten better about making it to the bathroom. This ussually occurs 24-48 hours after eating something with fructose. This issue lasts about 6 - 8 hours. We then start to have behavior issues. He gets much more sensitive (crys over everything). He is also very slow moving (like he has no energy). He falls asleep easily at this stage. It usually lasts a day or two. Anyone have some tricks to help with the lack of energy? It affects his school work. We try our best to keep him on track but, we are still learning what he can and can't eat. We also try to let him be a normal kid and visit grandparents, friends, neighbors. They all try but, mistakes happen.

I love this board. Thanks for any insite.

Nancy

[laurie]

OMG Nancy, is my son living with you?? (haha) You just described Hunter and everything I go through with him!! We also had the breath test, Hunter's numbers were soooo high it scared the doctor. I wish I could give some advise about what to do when he goes through his "cycles", but I don't know myself. I do see the same things in Hunter though that you see in your son.
They are putting a g-tube back in Hunter next week. I saw his pediatrician and the nutricionist from the hospital yesterday. The only thing I know is that they are having to special order a formula to run through the tube and it will have to have other things added to it as well to give him what he needs right now.
When Hunter starts his dragging around I make him eat 2 packs of smarties and drink a glass of milk to put some pep back into him. Since I've been tracking these cycles we have figured out that when the dragging around starts, his blood sugar is very low. The docotr yesterday said the smarties/milk is a good "quick fix", but not something that's going to really help.
They will be putting something through his feeding pump to kinda help keep his blood sugar up. They also said he really needs to eat a bunch of small meals during the day rather than the normal 3 (breakfast, lunch and dinner). We're going to give things a shot with the feeding tube and see what happens, if it doesn't help then he will be sent to an endocrinologist (sp).
I'm feeling better just knowing that they appear to have a good plan in place right now, so I'll keep you updated.

Laurie

[nancyrandall]

I am so Glad to hear someone else has similar cycles. I know the doc things I am crazy. I have had his teacher (who does see the cycles) jot down some things she is seeing in his school work. Next time we go see the doc we plan to push this topic more. Is the g-tube to help with weight or blood sugar (or both)? I know lots of HFI (or other fructose issues) seem to cause a concern with weight. My son has never had an issue with weight. This has caused us some issues getting doctors to look at him. They look at his growth chart and say that he is growing fine so he has no issues.

I had figured that his crash time was due to low blood sugar but, with most people who have diabeties or other blood sugar issues it seems they can eat sugar and correct the problem in a few hours. We deal with this for days. His teacher is very understanding but he is only in Kindergarden.

His doctors are not much help. We see someone every few months because we want more answers. Our next request is to gave the DNA blood test. Did insurance cover (some or all) of the test cost for those of you who have had it done?

He does eat lots of small meals all day (always has). This year his school schedule is great for small meals. My concern is that next year it will be harder for him to do that at school. I will try your smartie and milk trick and see if that helps.

Have a great one for all of you! We went to a diatition and she said he is eating great and the diet should be no problem. Her concern was that I give him adult vitamins (I chop them and give him kid amounts in yogurt). She wants us to switch to one flinstone complete vit each day. It is a childrens chewable. And I am sure you know where I am going (IT HAS SUGAR). Her comment is that it is such a small amount and it would be less work. We are not taking her advice.

[kristen]

Nancy & Laurie - My jaw is on the desk here! I just don't know what to say!!!!

But about the vitamin - we got the same advice and tried the same adult vitamin approach too....long story short - I'm working my way through several varieties of vitamins

Anyway, my husband found a vitamin that is a childrens version, does not contain sugar & Coley chews & eats w/ no problem.

www.supernutritionusa.com/perfect.kids.html

We got this at Whole foods. I give Coley 1 in the morning. They have a bizzare array of flavors & after tastes that are difficult to explain...but for whatever reason that appeals to him, so it works.

Originally I was concerned because it's so 'natural' but I think the mentality that the dietician was pushing with the whole 'small amount' works better with this one, as it may have some natural no-no's but it's not a little candy pellet.

And, he's been tolterating them fine - so I'm planning to 'confess' to the dietician that this is what we've been doing.

Anyway, hope it helps!!!

KJ

[nancyrandall]

Kristen,

Thanks for the vitiman link. I think I can get them at the local whole foods. I am sure he can tollerate them. He was doing fine on the standard childrens vit but, I just hate to add anyting into his system everyday if we don't have to.

Nancy

[Bia]

I give my children something prepared by the chemist, which is a copy of a British drug - Ketovite, produced by Pabyrn