Glucose

[Kerrynz]

:)Hi all.

I'm needing some straight talk please. Ist a bit of history and i'm adding a few side points, so i hope i don't loose you.
When our dietican 1st gave us the diet 2 things stuck out.
1.sprinkle some and add to every thing glucose to put on weight and give energy
2. side point SP] When i eventually get the diet right congrat's you will then have to deal with constipation.

I sprinkled and added glucose for 2 days. But within hours on the first day With all the symptoms etc, we had a new one. Lying on the floor almost unconscious, which i felt was my fault being a new diet.
So i'd pick her up and give milk and food and then off we go again.. When i mentioned we were having major lows we were summond to hospital and BS tested for two days. Funny nothing showed but then i never took the glucose with me. I was labled bad things at this point and sent home.

We went home and i hid the glucose and applied the diet all improved within days and is now stable, But with the recent posts and a nagging question in the back of my head, we decided to run a home glucose test using the glucometer.

So we played with it for 2 wks with daddy sticking his finger until she volunteered to try.Then it was time.

When she woke in the morning, 1st we gave her a 250 ml drink of milk, SP with benefiber desovled in it, then took her BSL 4.7 great we gave 1/4 TSP only of pure glucose. Then every half hr we tested.

1st it went up 5.7 then dropped 4.2 3.4 So at 1 1/2 hrs in we were crashing and already under the considered safe line of 3.5.

At this point we stopped the test. she was on the floor.and we had proved our point and HAD it RECORED.
We gave milk carbs and cheese. She responded in 10 mins. We tested, it was rising 3.8 we went out to play in the puddles and congratulated ourselves.

When we came in she ASKED for a test. 3.7 it was no better. We now feed and watered and it jumped to 7.2. SP. I know after a crash its normal to need food again about 1 hr later to keep the levels climbing so this we did.
So we had the normal afternoon sleep woke all was well, test fine, then again about 5pm she ASKED [not from the floor mind you she looked fine] for a test. 2.8 we then had diarrhoea. To cut a long story - next day with diarrhoea, it went up and down like a yo yo. Day 3 only now starting to balance out. All from 1/4 TSP pure glucose.

We need some idea's and feedback please we know none are DR's but comments from all please if you feel inclinded even if it's just to tell me we are crazy.

We are going to run another test this time with dextrose in a few days. 1st we'll let her little fingers heal, but at the moment the glucometer rules.
Then we get to show it to the DRs and with your imput we can move from here.. Can it be possible the intolerance is to this degree?

Kerryn

[Tammy]

I have to agree with Fred on this one. I think you're treading on very dangerous ground.

Sugar is still sugar. You don't want to add diabetes on top of HFI yet.

As much as all of you will not like this answer, I will repeat again. Stick with the artificial sweetners. They are the safest for HFI people. I know Fred doesn't like sweet, and doesn't use any, but my daughter Loves her sweets. I bake with dextrose, but other than that, we use Equal. (aspartame) I have never tried using glucose, or dextrose in drinks or on oatmeal, etc, so I have never had any experiences like you've been talking about. We've never had sugar highs and lows. I've never had to test her levels, because I don't play with them. She never eats pure sugar of any type. The sugars she does eat is always an ingredient, combined with others.

I also don't like the Stevia. It is another natural sweetner that is questionable. I don't allow it.

As far as the flax, I'm not sure. It's not something I've run into. So I've been running the question through my head "If I read it on a label, would I allow it?". I would probably stay away from it, only because I live by the rule of "if unsure, then avoid". I have a tendency to want to think of it the same as bran, whole wheats, germs, etc. It's something that is "healthy", therefore it is probably UN-healthy for HFI.

I need to repeat an earlier statment, STOP trying to make this a "healthy" diet by non-HFI standards. It's not good for them. Stick to the basic diet and use artificial everything that you can.

As far as the contipation problems, it sounds as though you've pretty much found a solution that works.

I think the weight gain problems will take care of themselves. Just like Freds did, and Regina has always been small for her size, but never out of proportion.

I really think it was wrong of the dietician to tell you to sprinkle it on everything. She should have thought about the side effects of it, too. I would definately let her know what I thought about it. I would maybe even think about finding a new one, except a new one probably wouldn't know anything about this either. That seems to be the normal.

And as always, these are only my opinions, but it seems as though us "old hats" are on mostly the same side. Pretty much "just stick with the basics " is the best advice.
Tammy

[kerrynz]

Greetings

Thank you all for your prompt and caring replies. We were happy to receive each of them. Yes we know we are travelling on dangerous ground. But I need to clarify a few things.
We did only give her 1 small dose of glucose no more.
We have seen this same floor laying scenario many times the only difference this time was we got a glimpse of what the BS’s were actually doing.

We live by the rule sugar is sugar and deadly whether liquid or granulated, and to be avoided at all cost.
But my question still remains in my mind? Can there be an intolerance to this degree, plus it now seems the antidote to LBS is no longer available to us because after we administer it we crash the same way we do when it’s a fructose crash. Plus remembering the late afternoon crash this 2nd was not foreseen and difficult to control.

Hypothetically if we had taken her to casualty with a LBS of 2.8 they would have administer glucose. But glucose was the cause not the answer.

After reflection can you give any more insight or have we overlooked something. We believe the glucose to be pure, but to enlarge the picture we have seen the same reaction with pure dextrose, but so as not upset anyone we will withhold this test.
Ours Drs are in the metabolic unit we have all 3 a Gastroenterologist. a Paediatrician and a Endocrinologist plus the dietician that works with this unit. Who we will be seeing soon.

The only way Zanoah tolerates dextrose is in cooking if there is a heavy fat content, and I usually use less than the recipe calls for, or she either refuses to eat or lays down afterward. In our home made ice-cream [just thickened cream frozen with a bit of dextrose add] she is starting to withdraw from this so we are going to remove it because its not cooked [heated].

Anyway maybe the suggestion is, unless you know your HFI person is happily tolerating glucose or dextrose, [because they are different]. I would trial a small amount first, if ever needed.

We seem to have queries with lots of the artificial stuff, does anybody use any of these.
#950 Acesulphame potassium # 952 sodium cyclamate # 421 Mannitol # Glycerin

# 421 seems to give diarrhoea #422 crashes her badly, and when I searched, is known to cause LBS. And she is always slow to go back if it’s got maltodextrin in it.
So we don’t use it.

On another topic Zanoah has never grown out of Constipation. 1 way I have come to deal with it is to offer broccoli every day. If she eats well and good, if no than that’s fine to, she knows her limit.
But benefiber is the only thing that keeps her moving and pain free and keeps her appetite strong, it is such a wonderful help.
The only way she will eat any white flour is if I have added Benefiber, Even Fred’s wonderful bread wasn’t working for her [/u]until I added 1 heaped teaspoon to the warm water.

All the time with think how thankful we are to have your feedback, keep up the great effort you are making, we appreciate it.

Kerryn

[Tammy]

Kerryn,
We use all of those sweeteners except glycerin. Glycerin was on my original list as a maybe, unsure. But we have found that it is something that she can take once or so if it's in a medicine, but not something she can eat on a daily basis.

Mannitol and Maltitol is on Kristens list and pretty much doesn't sound good. But Regina eats it everyday without fail and doesn't have a problem at all. Every package I've seen with it, it'll usually say that it can cause diarrhea if eaten too much. So that may not be HFI related.

Acesulphame potassium and Sodium cyclamate are both something that she has not problems with either. She eats these quite often, too.

I still use my old original lists from the Boston site. It says any artificial sweetener that has no calories, other than Sorbitol, is ok. (This was before Splenda). Some agree with this, and some do not. After reading Kristens list, I do not understand why this is so, but since it works for us, I will continue with using them. I guess this is one of those things that you'll have to try to make your own decision. What did your dietitian say?

[Tammy]

Kristen,
I think letting Coley learn "the hard way" is probably hard for you to do, but probably a good way for him to learn. When you find something that works, then that is a good thing. I was agreeing with Fred on trying "experiements" with sugars just to get "data" to give the Drs. It is very interesting, it brings up questions to be looked into, BUT it is a little girl we are talking about and I would prefer things like "tests" to be done with Dr's knowledge, advice and guidence. What if she would have "crashed" so far that a cracker or something wouldn't have done the trick? The real trick to trial and error is to know how far is too far. And my only trial and errors are with things that are limited. How limited was my question. If I would have had even an inkling that something would have made her act like Kerryn knew was going to make her daughter act, then I would have just avoided it at all costs. Back to the "if unsure, then no" theory. It's not that I forgot what toddlerhood was like, It's that I DO remember and would rather see the diet be too restrictive until she is old enough to help explain how she is feeling. Then maybe she can help answer some of her own questions.

I really can't answer any "crash" questions, or fat questions as I simply don't know. We've never had any of those problems. Regina has always just eaten when we eat, and even as small as a todler, if she didn't eat, we didn't have to worry about it. When she got hungry enough, then she'd eat. We didn't have any crashes or mood swings, or anything of the sort. She was just a "normal" kid with a different diet. Of course she has her handicaps, but none of the behavior or emotional problems that some have.

The whole potato question is insteresting. Fred's explanation makes sense to me. And since it works best for him that way, I'd say it's probably that way. Maybe it's the first mistake my old, tried and true dietician made. Maybe she just got it backward. It's something that I would not have found out because Regina doesn't have any problem with any potatoes. And it doesn't matter how I make them. Her favorite is mashed with butter and milk with fries coming in second. She will eat baked potatoes, but only if she doesn't have an option. Since she has no reactions, I don't think it's an HFI thing, I think it's just a taste thing. (Like Fred and eggs ;D)

Tammy