Stevia?

[nancyrandall]

We have not used Stevia (we use dextrose and glucose syrup). Peanut butter has some fructose. We use it very limited for special occasions (very thin layer). Anything more than that and we see issues.

My kids just drink water and milk. They use a lot of the little bottles of water. They are not cheap but, I figure it is one of the best drinks they could have so, I supply them.

My oldest did not eat meat for a long time. We just kept offering it in small amounts and he now eats some meat with out any problem. He still does not eat much hamburger or pork but, loves chicken in any form and most fish. Salmon is his favorate. We served shrimp and samon for his last b-day party (along with some other more kid liked food). The other kids just looked at him like he was crazy.

Have you tried dextrose? If not give it a try or see if you can change the donut recipe (in the recipe section) to use steva. I would suggest suprizing the kids with a dunkin donut day of your own at home.

With no meat, veggies and fruit, you must eat lots of pasta. He does not eat veggies much at all. I have not pushed them. He will eat lettus in a sandwich or taco, likes broccoli but, he can only have a few small bites a week. He loved eating pickles so when I read that cucumbers were ok I was thinking of making some pickles for him but, he will not eat them raw. I tried mushrooms on pizza but, he picked them off in true kid style.

Better run and get kids to school.

Nancy

[kristen]

Honestly Marcy, I'm at a loss today.

Coley loves PB, he loves legumes, and he loves veggies. But they apparently don't have the same affection in return.

In fact, we have an appointment with his ped today, and I'm literally at my wits end...I'm exhausted from no sleep this week, tired from fighting with his neuro yesterday trying to convince this man that in the absense of fructose exposure Coley's PDD symptoms disappear...I'm sorry this clashes with all that his precious books say, but it happens top be a REAL fact for us! GRRRRRR!

I literally just hung up the phone with DH, where we had the conversation that we feel like we're trying to force these Drs to find the solution, when we already know what it is: Coley can't tolerate any fructose - period!

As for the PB and other things...I'm now convinced that these things bothered him less than stuff like apples so he seemed to like it...I give it to him now, he eats it, because he loves flavors (plus I'm sure that Fred. Charles & Peter are correct that giving sweets ruins their aversion) but it bangs him up after too: sleep, focus, hyperactivity, depression, non responsive, withdrawn...

Why does it affect Coley neurologically more than digestively? I don't know, and I'm not sure it matters anymore.

I listed those items because according to the USDA they have very minimal fructose. Coley's ate cucumbers this week...OY! I just don't know what to say. Technically they are safer than broccoli. Reportedly others eat them unlimitedly. This is not the case for us. I obviously celebrated WAY too early!

I havent' tried stevia, we use only glucose & dextrose. Initially all sugars bounced Coley's BS, but it 'seems' like it just took some time for his body to learn how to deal with sugar in the absence of fructose...he does fine with it now.

As for drinks, Coley drinks milk, green tea (rarely) & water. He refuses carbonated stuff, and hates sugar free drinks, including pedialyte.

He won't drink milk plain though, so I make him 'iced coffee' (that's what he calls it). I use decaf maxwell house or whatever.

I'm still in the 'boosting' mindset with his weight being so low, but I've recently reduced the amount of fat that I use to boost. So I make a batch of his ice coffee as follows:

2/3 cup dried milk: 160 cals
1/3 cup dextrose: 355 cals
1 tsp decaf instant coffee (this I've been weaning this from 1 TBL)
fill to 32oz with 1% - 2% milk: 420 (approx)

This comes to about 30 cals per oz, which is basically what the dieticians told us to boost his drinks to due to his FTT. But they recommended just using 1TBL of cream in his milk/formula.

I've also used the Fountain flavor & the vanilla in place of the coffee...much smaller amounts though. I ask Coley each time I make a batch which he wants, and lately he's been sticking to the coffee thugh.

Since reducing the fat he wakes better in the morning and his BS doesn't swing so much between meals. So I've been able to allow more than 2 hours between meals, and I've really been able to attack that nasty eating disorder too. I been able to allow him to tell me when he's hungry because he's just not teatering on the edge of crisis all the time.

(edited to add) oops forgot one thing, Coley used to LOVE meats before restriction. I'm starting to think it's a lot like those other things: PB, legumes, etc. They were just the least offensive things to him....since restricting he's lost interest in his favorite meats: turkey, beef, sausage, ham, etc. He eats more chicken and fish...but since reducing his fat his interest in meats does seem to be rising, but slowly. He's eating steak, but burgers are a chore. Sausages, but chicken & turkey only. Ham, but only low fat deli meat.

I don't know if any of this was helpful...hope so.

KJ

[Tammy]

We also only use the dextrose and glucose. I've never tried the stevia. And I've never tried the PB.

As for drinks, we also stick with mostly just milk and water. But since Regina is fine with aspartame, she also drinks diet sodas sometimes. She also uses the SF Nestles Chocolate mix, but this also has aspartame in.

She loves meat. It has never been a problem to get her to eat meat. Most any kind as long as it's plain. She's not big on flavors.

I also think Nancy's suggestion of having your own doughnut day is a good idea. They also freeze well, so maybe take the whole day and let the kids help make a large batch, or several batches and then freeze them so they have them readily at hand.
Tammy

[kristen]

Oh...just thought of yogurt. Are the kids eating plain yogurt?

If so, especially with the cooler weather coming, you could make a richer type drink for them, a yogurt smoothie type drink. You could use either pixie stix or vanilla (w/ stevia) and just add some to milk.

Lisa (and I think Laurie) uses stevia, I'll shoot messages off to them so they don't miss this...

KJ

[laurie]

Yes KJ, you were right, we have tried Stevia..............
Stevia like every other substitute failed!! Hunter's drink intake is water. Every now and then I can get him to drink a glass of milk, but with his dumping syndrome he's only allowed a maximum of 2 glasses of milk per day!!!

Laurie

[lisa]

Marcy,
We have been able to use stevia, but since Faith and Foley are SO sensitive, I feel there are very few things I'm going to be able to suggest that will work for them. Before I found dextrose, this was all we used as a sweetener. Nate can tolerate dextrose, stevia and aspartame and I use all of them. I have found a few things that may be interesting to you though...

I have used stevia in ice cream because I ran short on dextrose and it turned out pretty good. Not sure if it would work using only stevia, but probably worth a try.

I make yogurt and smoothies with stevia. Nate's favorite is cinnamon vanilla. I bet the Lorann's flavorings would be great in those. I'm thinking about getting an artificial orange flavor and trying it out. When I make smoothies, I usually make extra and then freeze the rest into popcicles.

I did make popcicles with koolaid sweetened with stevia once and it crystalized all over the outside and tasted horrible. I think it needs to be mixed with something pretty thick if you're going to freeze it.

I have not cooked with stevia - usually use dextrose for cooking. There are a few websites that list stevia recipes. Here's one that has a lot of recipes on it: cookingwithstevia.com. There are a lot of fruits in the recipes, so it takes a while to find something that will work with this diet. I found a cheese pie recipe that looked pertty good. I'll either post it here or e-mail it to you. I'll also make my next batch of cupcakes with stevia and let you know how it goes.

Other than that, I use stevia to sweeten Nate's shredded wheat. He likes it with hot milk so that the cereal basically turns to mush. I usually use 1/2 packet per bowl. Sounds like yours would likely not tolerate cereal well, but not sure.

On the meat issue - Nate used to eat any meat we gave him prior to diet restriction in December. As soon as we restricted the diet though he went to only eating chicken nuggets and sometimes will even refuse those. He is pretty much a pasta, cheese, and PB&J sandwich kid. If I put any other sort of meat on the plate next to something he likes, he will boycott the entire meal until I remove it from the plate. It is frustrating that he is further limiting an already limited diet, but it seems that a few kids here have the same issue.

Oh yeah, I also mix stevia and cinnamon with peanut butter. I use 1 or 2 packets in the whole jar when I first open it. Doing this makes the PB not get hard when you stick it in the refrigerator. We go through a fair amount of PB here. It seems that is the only nut/legume that Nate can tolerate fairly well. He eats a tbsp or so maybe 3-4x a week. There are times though that I can tell he has eaten too much (bad BMs) and will remove it from his diet for a few days so he can normalize.

E-mail me if you've got any other stevia ideas that have worked for you. I'd love to use it more, just haven't had much time to experiment. I'm going to try the seltzer water and see if he likes it.
Lisa

[kristen]

Marcy, I found a medical write up you may find interesting. I've got a busy weekend a head - I only popped in to get Fred's mac&cheese recipe...but wanted to thank you for your note...and let you know that I'll post that link when I have a bit more time...it may generate some good conversation here...

Also there are other sugars that Fatith & Foley may be able to handle, but are probably harder to work with: lactose, galactose, maltose, maltodextrin, polycose, etc. There are a couple sites posted here that carry these. I'll dig them up for you later, if you are interested...thnking ice cream, pops, and that kinda thing should work pretty easily.

Lisa, please post the cheese pie recipe! I'm sure that most of the kids here will like it...I've been thinking along the same lines: cheese cake as my next trial. First though I wanted to master the gingersnap cookie so that I could make a gingersnap crust (versus graham). Tammy's tips helped a lot, which I need to update you all on, but I think I've stumbled on to something else that may be part of our baking woes AND something that may help reduce the burnt edges! Anyway...I'll post all that when I do a bit more home work!

BTW, were you ever able to translate Andrea's recipe's?

KJ

[kristen]

Marcy, I cannot find that article...I've been lookign & looking. I havent' given up, but just wanted to give you something to look at:

www.answers.com/topic/gluconeogenesis

What I recall from reading is that with FDPase deficiency, there is a chain reaction that occurs...the exact order of the chain I didn't commit to memory, but it starts with the hypoglycemia, glucagon generation, lactic acidocis, pyruvate, etc...if it is not interupted it eventually affects the mitochondrial process. Which can look different in different affected people: depending on severity, and damage to date.

This is where I had come up with the idea that perhaps (for example) Gillianne is seeing issue in her joints because there is already a 'weakness' gentically there, perhaps Coley's weakness is neurological due to his underdeveloped CNS, etc.

How I stumbled onto it was actually by following the trail from FDPase to GIS...apparently (as you are probably aware) there is a close relation between fructose intolerance and glycerol (fatty acid) intolerance.

I will keep looking...but didn't want you to think I forgot about it...

----

I just found this: www.merck.com/mrkshared/mmanual/section19/chapter269/269h.jsp

It's also not the article, but it basically spells out what I recalled, but in a MUCH better way...

Apparently anything that disrupts the correct degeneration of lactate and pyruvate will hamper mitochondial function. Fructose Intolerance is just one disorder that will foster a mitochondrial disfunction for this reason.

I can see now how a muscle biopsy can add to the list of all the 'other' clues that will support a FDPase diagnosis, but it still can't positively diagnose FDPase. Certainly, however, it can illustrate how different affected individuals will present widely different symptoms!

Hope this helps....it added a ton to my understanding! Check out the link I posted today in the other section too...great info!

Thanks!

[kristen]

Marcy, Here's that other link:

www.bulkfoods.com/baking.asp

It has some other sweetners that may be safer for Faith & Foley.

[Chelsea]

I use stevia for a few things, mainly baking. I still use the dextrose but cut some out and add stevia. I find that the stevia does make things sweeter than the dextrose alone, which is nice if your serving something for non-HFI people as well.

I use stevia for myself as well. The first recipe I used was to make Gillianne's Birthday cake. I used the crazy cake recipe, using dextrose:

cake.allrecipes.com/az/CrazyCake.asp

It wasn't very sweet though so that's when I added 3 TBS of Sweet 'n Natural which is stevia in a lactose base. It was perfect. I think I had read Kristen say if you used a recipe with vinegar the dextrose won't burn- Is that right? Anyway, it works for us.

[kristen]

I don't know about the vinegar...I just noticed that recipes w/o baking powder usually work better form/texture/burn wise & they also happen to use vinegar in it's place.

Course I made that judgement with the few recipes we have here and the few trials we've discussed.

I think I made that crazy cake for Coley when we couldn't figure out what the heck was bugging him...no milk, no gluten, no egg...

and it works well with the dextrose???