Behavior changes

[Benjamins mom]

For those of you whose kids have major behavior changes when a little fructose is in their system....do they have any measurable symptoms at that time? low blood sugar/ketones in urine/anything else? Ben is so 'off' from a little brocolli he had the other night, yet everything else is normal. He is beyond hyper....he sprinted in circles for much of the day yesterday and if he doesn't get his way he's violent...knocks over my chairs, picks up a handful of toys and throws them, hits, kicks. He's always like this with a little fructose in his system and I'm just wondering if anyone knows what is going on and if there is anything I can measure to 'prove' it's a reaction, not just normal toddler stuff. I haven't gotten the ketone strips yet. His breath smells fine and he insists his tummy doesn't hurt, but I know something is going on. Thanks!!

[nancyrandall]

My 6 year olds behavior changes (similar to yours) and I don't know of any measure. We have not gotten any ketone or blood sugar testers yet. I did talk to a friend of mine who's son is diabetic and does have ketone issues sometimes. She said that her son never has bad breath with high ketone levels and that it is a sign for some but, not all.

Our behavior changes are hyper behavior (almost jittery) and he can't get to sleep seem to control his behavior. After a day of this he crashes and will fall a sleep in odd places (alter at my sisters wedding, school, bus, friends house).

My son does tolerate a sprig or two of broccoli now and then but, we have not pushed it and he is not a big fan. We basically do no veggies or fruits and just eat lots of meat, sea food, dairy, pasta, and breads and our daily desert. He was sick with lots of ear infections, viruses, colds, ect as a baby but, once we cut the juice and then other stuff he had been my healthy one. He only goes to the doctor for shots and to discuss food issues.

Nancy

[Benjamins mom]

Thanks, Fred for the thought. I have thought of that also. Ben's sitter actually gave him a few of the bunny shaped smarties, left over from Easter, the other day. I remember him eating lots on Easter and being way above and beyond active the following week. I thought it was a reaction from too much dextrose...but I just checked smarties online and there is red dye in them. I guess it's a possiblity, but I think at times of true fructose overdose he has had behavior changes too. I guess I will pay closer attention now. It is comforting to hear others go thru the same thing with their kids, because I often get the crooked eyebrow look at the doctor's office and then think I'm over-analyzing and that his violent/manic behavior is normal toddler stuff....even though my gut says it's not, esp when he bounces back to the normal active toddler stuff a week or so later. So...thanks for the responses!! If anyone discovers something that can be measured during behavior changes to 'prove' it is a reaction, let me know! On a side note....for fructose intolerance, is there a limit to how much dextrose can be tolerated? I mean, I don't plan to serve it to him by the bowl-full's or anything....but just want to know if it's something I should monitor in muffins/(non-red)smarties/etc. Thanks!! carrie

[nancyrandall]

Good point Fred. My sister has issues with all artificial colors but red is the worst. My mom had her (all of us) on the Feingold diet (www.feingold.org) as kids and my sister as an adult still follows a diet free of preservatives and colors. She feels much more moody when she has something with colors. The diet does also restrict some fruit and veggies on one of the phases. This has to do with the natural salicylates. They have some very interesting info showing that these can cause lots of issues for some kids and adults.

We followed the diet with my oldest for about 6 months to see if it had any effect but, we did not see a difference. It was the first thing we tried because I knew apples and tomatoes were big in salicylates and he had big reactions to apple juice and tomatoe sauce. Now I know it was the fructose.

Nancy

[Tammy]

I just want to add a note here.
Lactose is also safe for HFI. It is also processed differently. Lactose is the milk sugars. HFI can have as much as they like.
As for dextrose and Glucose (and aspartame also), I've never had to limit it. She eats as much as she wants.

Regina is like Fred. She's also too busy being sick and is definately not hyper. She hurts so bad she doesn't even move. She also doesn't "cycle" like these kids are doing. She just gets sick until it's finally over, hours, days, one time weeks, and then she is fine.

As for the "limited" things, like broccoli, if she over does it, she's never had any behavior changes. Just a lot of running to the toilet. So in a way, I guess you could actually say it's still like being sick with the flu, just not as bad a case of the flu. Only the one end runs.

[CK]

I used to have a lot of hyperactivity, almost from an adrenaline rush type of feeling. It was similar to what you talk about with your children. As an adult, now I understood that something was out of balance that I couldn't control and stop, and it manifested as excess energy, needed to move a lot, etc. I can see where a small child would act out because it is very hard to control that adrenaline feeling and use up all that crazy energy inside. As they get older, they'll probably find ways to try to calm themselves down, not act out, and use that energy differently. (Jumproping, biofeedback/relaxation techniques, etc. help me) For me, I found it was the gluten (wheat, barley, oats, rye) that caused me the problems with behavior changes, dizziness, etc. When I accidently get fructose, I tend to have more stomach and throat/vocal problems, low blood sugar, sleepiness, etc. With wheat I also have the stomach issues, but more of that crazy "I have to move" energy, dizziness, and if I was a kid I would probably want to kick, bite, etc. When I was a kid I used to tell the doctors that it felt like fizzy pop in a tired body.

[Chelsea]

I have never noticed the hyperactivity with Gillianne. Her response to fructose seems to be more like Fred in that she just feels lousy. She gets very bloated, whiny and then she proceeds to breastfeed all day on and off. At age 2 she still nurses as much as most 8 month olds but it seems to make her feel better. I think we also haven't seen the LBS symptoms like many others have because of that.

There are two things for her, ketone's and glycerol. Ketone's I can check with her dipsticks and since I have to check her urine daily for Ph and specific gravity for her kidney issues anyway, I do notice a few things. 1. She is dumping at night- she wakes dehydrated with increased ketone's but quickly resolves. My ped wants me to talk to the our Dr about cornstarch at night to maintain and see if that stops the dumping 2. If I see ketone's in the afternoon hours I can trace it back to a food, like soy milk a few months ago. Other then the dehydration, I am happy to say we haven't had ketone's for a while.

For some reason not all fructose loads have shown ketone's. At times she wakes and her diaper is VERY stinky but there are no ketone's. This smell is likely the glycerol in her urine, of course there is no dipstick for this one. I learned this from the many expensive urine organic acids test she has had. The glycerol in her urine is what led to our diagnosis.

Kristen, I wonder if this is what you are smelling? Has Coley ever had the glycerol in his urine? I used to complain so badly of the smell, which is what started all of our initial testing. I once left a wet diaper in the car and the next morning we couldn't even get into the car until I let it air out for over an hour.

[Chelsea]

Gillianne has had the urine organic acid studies done approx 4 times. Once was 2 months after the fructose restrictions. There were no changes in the glycerol content of her urine, which is one of the reasons her Dr wants to move forward with the liver biopsy. He isn't clear on the glycerol and it's meanings, whether we should see it reducing or whether it is always going to be there. He also doesn't know if it's continued presence is a sign that maybe something more is going on, again, why he wants to move on with biopsy.

As for the dietary restrictions, they are surprised with her fructose limitations as they felt she would likely be able to tolerate some (like whole grains) but hasn't. They have not even contemplated reducing her fats. Opposite actually, she gets a lot of fats.

Gillianne is still failure to thrive and whether that is tied to HFI, RTA, JRA or something else, caloric intake is essential for her growth. While her body isn't growing, her head is, which is where the fats play the largest role in brain development. That said, I think she has a preference for carbs and her intake is high. I have never paid much attention to the ratios, just as long as food gets in. We also haven't had the LBS issues that you hae had to deal with.

[Chelsea]

kristen said:

Anyway, with all that and what I've read on the FDPase stuff, I decided to squelch the boosting with fats (although he does still get his daily Omega 3), after seeing the positive effects I reduced a bit more.

I am wondering where you have found the dietary info on FDPase. I haven't seen anything about further restrictions than fructose. I would definately like to read it and discuss it with our Dr.

[Chelsea]

kristen said:

Ok. I'll ask Dr Shih if Coley's glycerol levels are outside normal & let you know what she has to say about any interventions.

Any updates on his test results?