cornstarch and sweeteners

[FMmom]

My daughter cannot handle corn flour (stomach pains and instant behavioral problems.) If she has a problem with that, does it follow that cornstarch is out as well? And dextrose?

Kaelin desperately needs to gain weight, but it's hard when she can't eat anything. So I made her a drink that tastes like melted ice cream and she was drinking it three times a day: cream, a splash of vanilla and a little sweetener.

I thought stevia was okay if you get the type without any additives, but she became very hyper. I switched to Sweet'N Low (saccharin) because we had it around, but that wasn't much better. Then I tried cane sugar and that was fine for a couple of days, but quickly overloaded her fragile system.

We saw her gastroenterologist yesterday who wants me to continue with the cream regiment but I need to find a different sweetener. I bought some Sugar Twin (97% dextrose and 3% saccharin) and she only used a half packet, about .4 grams. We'll see today if that is any improvement...

In addition, to help with the hypoglycemia, the doctor says that adding 3T of cornstarch to her nighttime shake can help slow down the digestion overnight so she doesn't have the crazy blood sugar problems upon waking. I tried it last summer and it was a miserable failure, but that may be due to the ice cream and cherry juice concentrate I used (before her FM diagnosis.) Wow, was that a disaster!

If she can't handle corn flour, does it seem logical that cornstarch and corn sugar would also be problematic?

[Charlie Arnold]

It may be you need to look into the make of your cornstarch as I think some are wheat based, however I have read somewhere that maize can be a problem for some.

I have heard about cornstarch for hypoglycemia, Meg was tested for Glut1 deficiency with a lumbar puncture to test glucose levels in the spinal fluid, horrid, horrid experience and it was Ok at the end of the day so they decided not to try it, never got round to trying it out of interest as never found out quantities to use, I think one mum I met in hospital had to wake her daughter at 3 am to give it to her and that kept her blood sugar up enough overnight.

If she isn't good with sweeteners of kinds can you keep her diet as savoury as possible with only occasional treat.

[FMmom]

Oooh, my older daughter had a lumbar puncture -- egad what a horrible experience! It wasn't the puncture that was so bad, it was afterwards. We were told that she should rest if she's feeling sore or tired after the procedure but she felt great so she went golfing. And threw up all over the course, then went to bed for two days with a headache so bad that she sobbed for hours on end. Hmmmm, the instructions should have been, feeling good bad or indifferent, just stay in bed for three days.

I wish I could stick to nothing but savories for Kaelin, but that is just impossible right now. The cream is the ONLY thing that I've been able to add to Kaelin's diet that doesn't replace other foods... Every time I add one item, she takes something out. But with the cream, she drinks it along with her meal or sometimes she'll drink it as a snack (when she wouldn't have eaten anything otherwise.)

Right now, I am just this side of complete hysteria -- she stepped on the scale this morning and she is now under 50 pounds (22.6 kg to be exact). She's down almost a pound since her doctor's appointment on Tuesday. Wed morning, Kaelin didn't take her meds for ADHD and she was really hyper when she got home from school. I gave her the med at noon and around one, she drank the cream with Sugar Twin. The meds should have kicked in by then, but she got much more hyper as soon as she finished the drink. I can't be positive that was a result of the Sugar Twin, but it seems likely.

So I tried again yesterday and she seemed not quite as agitated as Wed, but still showed a big change in her behavior. This morning I went back to cane sugar and she'll be home in about an hour so I'll see how this worked. Maybe it's not the sweetener at all -- maybe it's the vanilla... (I'm reading through a discussion on salicylates and there is a wide variety of problems associated with that. Good grief, if it's not one thing, it's another! I'm losing hope that I'll ever figure out what to feed her!)

Sigh I just don't know what to do -- I have to add calories to her diet, but not increase her activity/anxiety level.

I'm at a loss.

[sherri1]

I use dextrose as a sweetener all the time as does my daughter who has FM also. We order it from bulk foods.
I make my bread with it. also cinnamon rolls muffins etc.

[Charlie Arnold]

Hi Sherri1, have you tried table sugar at all, if so to what effect.

It is on our list as OK but I'm not convinced Meg is ok, she is definately yo=yoing more and seems to have less energy again to do much more that school these days which is very like the old pattern before I cut out all fructose.

[catherine]

"Table sugar (sucrose) when eatin in moderation, shouldn't cause symptoms. Sucrose is a double-sugar made up of one part glucose and one part fructose. Large amounts of sucrose in one sitting may be a problem for some"

From 2011 Shepherd Works, dietian notes.

What is your table sugar made from our is from sugar cane.

Corn Flour in Australia, needs to be gluten free as normal corn flour is usually made from wheat.

Catherine

[Charlie Arnold]

I am using the organic unrefined cane sugar as much as possible.
Its hard with the sugar as I think it triggers ADHD symptoms with Megs. So you then have a double problem.
I'm just building it up slowly and seeing what happens.

I might try that corn flour idea in an evening drink to see what happens as Meg wakes up with really low blood sugar and that creates real problems with getting her going in the morning and the school are starting to moan again about her turning up late.
what quantity were you advised to use FMmom is it 3 teaspoons or tablespoons.