connections to asd/adhd and HFI in children

[annemarie]

I am a mom to 9 year old boy with symptoms of ASD/ADHD. He has been on fructose free diet since we discovered he has HFI 3 weeks ago. He has had elevated liver results on labs most his life. Does anyone have a child or know of a child that improved behaviorally and/or developmentally after being diagnosed with HFI and going fructose free? And any ideas to how long the body will take to clear out the toxic fructose and heal the liver ?

[colormist]

I'm not finding any straight answers online (answers are varying from 2 weeks to one year to never). My guess is that your doctor might have an better answer for you.

I know a few people on here have had HFI children undergo drastic changes once they were put on the HFI diet. I don't recall the specifics though. Hopefully they'll respond.

[rysmom14]

My son has been fructose free for about 8 month since he was diagnosed and while his liver function is better and his liver enzymes are continuing to come closer to normal range, the actual size of his liver is unchanged. When he was in acute distress it was 5 x's the normal size for his age and it has not changed at all. His doctors don't know if it will ever go back to a normal size or if he will just grow into the size as he gets older. ( he is only 2 yrs old now) I am less concerned about the size and happier that it functions normal. at one point it was not and he had to be on meds to keep him more normal. I have gotten the same answers as far as timeline for things returning back to normal. It could be quick, take years, or never go back. It all depends on the person and I do not think there is anything way to change that outcome.

As far as behaviorally, after the fructose was removed from is diet, my son became a new person. It was rather quick, maybe a couple weeks, but he seemed to come out of the constant "funk" he was in. He had always been laid back and we thought it was his personality, but after he was fructose free be became a very spunky and funny little boy.

I'm not sure about the adhd/ add symptoms and if that will get any better, he may have been acting out because he didn't feel good, but didn't know what to do about it or how to make himself feel better.

[anne marie]

thank you for your reply! I really appreciate you sharing your son's experience and the information.

[stefaniebillette]

Feb 11, 2016 21:10:22 GMT -5 anne marie said:

thank you for your reply! I really appreciate you sharing your son's experience and the information.

My baby was hyper and would not sleep and hated car rides. Since being 100 % fructose free, he is much more relaxed and is sleeping better.

[jejns1]

We discovered HFI when our daughter was 8 years old. She was diagnosed with a sleep disorder, Childhood Onset Bipolar Disorder and possible Asperger's.
When we had her go fructose free, not perfectly but the best we knew at the time, the results were
amazing. Her grade 3 teacher wanted to know what we were doing because she was much better in school.
This was days after the diet change. The Asperger's like symptoms and most sleep problems went away after several weeks. She did not and does not have Bipolar. The misdiagnosis by several doctors had her on several antipsychotic drugs and the side effects were awful.
She is 16 and will sneak sugary treats sometimes. She knows she shouldn't. When she does, I can tell a day
or two later. Moody, fidgety, craving potato chips.

[colormist]

Mar 1, 2016 13:51:07 GMT -5 jejns1 said:

Moody, fidgety, craving potato chips.

I think you just described my personality in a nutshell!

[ukbill]

When in a post Fructose reaction for a few days I can be totally brain fogged. I cannot even get to the end of a sentence before I've forgotten the start of what I was saying and have great difficulties with finding nouns to name things.

I am badly Dyslexic however but the after effects exasperate the condition many fold.

So I would expect any behaviour problems to reduce dramatically as the diet improves and attention span increases dramatically as a result.

Someone once said "We are what we eat" well that might be true but certainly what we eat greatly effects who we are. study after study on children has proved beyond any doubt that junk food diets dramatically reduce children's attention spans and academic achievements.

Studies in America on feeding Prisoners a better diet also showed startling reductions of over 66% in violent behaviour.

McDonald's anyone??

[jejns1]

Interesting, Bill. My daughter is also Dyslexic. No doubt that what she eats affects
her schoolwork and testing.

[ukbill]

It is possible that a fish oil (omega 3 / 6) supplement and vitamin D of course along with our obligatory vitamin C might help a lot.

Nothing compares to having a very low fructose diet however.. that is the best for me its just occasionally I crave green foods (might be a vitamin deficiency making its self felt) or I eat out and a sauce / gravy has a little too much naughty stuff in it.. I can feel it for days after.

I do eat a lot of Fish Salmon and Trout or did my partner is not keen on fish or the smell of it cooking so we do not eat fish as often as I used to and I think this is effecting me a little. so might start on the Omega 3 /6 supplements as well.

There are none fish oil Omega supplements made from vegetable seeds.. however given my "sensitivity" to some Veg oils I will stick with the fish oils I think.

Will let you know how I get on.

[anne marie]

Thank you all so much for your replies. It has been 2 months since we are fructose free. I have seen some improvements in sleep and his liver functions are in normal range. You're responses are uplifting.   I haven't seen a lot of other behavior changes. But I am hopeful that a body that functions better will help him develop better. 

[anne marie]

It's official! My 9 year old son received the results from the serum test done at Baylor university which confirmed 23 and results. I was pretty sure but glad to have finally have the HFI diagnosis. It's such a relief to have this forum to turn to. His dietician recommended some veggies which I am pretty sure most of you would agree are a big no-no. I am concerned about his diet ...I would like to try some low fructose leafy greens like spinach to start.
He is dairy and gluten intolerant. We took him off gluten and dairy when he was 2 and he started to speak and learn almost immediately. I might try to reintroduce dairy in the future but for now I know i believe he will need supplements to fill the GAP. The dietician suggested vitaflo friutyvits
but it has sucralose. I appreciate any of your suggestions to help me help him meet his nutritional needs.

[colormist]

Hi Anne Marie! Congrats on the confirmed diagnosis!! That has to be a huge weight off your stress load!

As for the vitamins, I would suggest talking to a pharmacist. I take Nature Made multivitamins, but I'm not sure if they have a children's vitamin that is fructose free. At the very least, the pharmacist would have more knowledge about vitamin contents and might have a better idea of how to get unflavored vitamins. It might just end up that the pharmacist chops up the flavor-free vitamins into child doses.

If you're trying spinach to start, be sure to read the bag and make sure it's not winter spinach (which is much higher in fructose). I would presume it's easier to obtain the normal spinach during the summer/fall months. From what I've read, winter spinach is grown in greenhouses during the winter months. I've never seen it distinguished on the pre-packaged stuff at my grocery, though (probably because it all comes from S.California and they don't have much of a winter).

Let us know if we can help with any other questions!

[anne marie]

Thank you for your reply Colormist! I really appreciate all your help.
I would ask if all types of olives and olives oils are ok or is is just green olives and olives oil made from green olives. I recently purchased Kalamata olive oil and I want to make sure it's ok for my son.

[colormist]

The only thing I've noticed that might be unsafe with olives is that sometimes the olive manufacturers brine their olives in sweet wine or grape juice! Other than that, I haven't noticed any issues. I use Olive Oil in most of my cooking, but haven't come across kalamata olive oil! That sounds interesting and exciting!

[heatherp]

My son was diagnosed with HFI much earlier - at 16 months - but we noticed huge changes after diagnosis. It took about ten months until I could no longer smell fructose on his breath (that's weird to say I suppose, and the smell was more dead fish and less fructose, but it took ten months for that smell to go away). In those same ten months he started to sleep (finally and hallelujah!) at night and no longer napped for hours after every meal, became more steady on his feet (he had issues with hypotonia prior to diagnosis), his nystagmus completely disappeared, he went from an always crabby baby (literally, very tough to deal with crabby) to smiley and happy, and he was developmentally delayed at diagnosis in speech and language and all other skills across the board, but by a few months after his second birthday he had caught up in all of them. It was like his brain just cleared about six months after diagnosis. So I think you may just continue to see favorable results. It was a long haul, and I always thought "wow, it seems like all the fructose has finally left his body." But then I'd look back and think, "Nope, last month I spoke too soon but this month it's all gone finally." In retrospect it was about ten months for my son.
Now as for vitamins, Solace Nutrition makes a vitamin called NamoVM that you can mix into foods. Of course your child could swallow pills probably and so you might not need this. But if you are looking for something like this just google Solace Nutrition and know it is safe.

[heatherp]

Oh, I was going to add that we thought my son was dairy intolerant as well but then he was diagnosed with a congenital lactase deficiency and now he does well on lactose free milk. He does so-so on wheat. Eats it with no HFI effects but it does make him bloated if he eats if with regularity. We haven't begun to investigate the why on that but it is on our list. Seems to be fine for him if we limit to a few servings per week only. Anyway, just thought I'd add those random tidbits. Glad you got the diagnosis confirmation and have seen some positive changes!

[anne marie]

Wow...that's really helpful information Heaterp!  Thank you so much for sharing !!!
Mark has started swallowing pills so I am currently looking into trying to find one that has what he needs. I will look into the one you mentioned even though it's in powder form. 

[jenn123]

I am just reading this post and wondering if you were able to find a comprehensive vitamin for kids that does not contain fructose, sucrose ? We have tried the Nano VM and my 9 year old prefers pills vs powder. Any luck ? Thanks

[annemarie]

Sorry, I have not found a multivitamin in pill form that is HFI safe.
Currently I am not giving him any vitamins but incorporating nutrient dense foods like bone broth, chicken liver or lamb liver in his diet. ( liver is from an private Farm- high quality or whole foods). We are also trying to incorporate raw butter again. The only thing that concerns me is a lack of vitamin C. And the vitamin C we were using really upset his belly. But from my research I see that raw sauerkraut has a lot of Vitamin C. And I believe it's HFI safe. Hope this helps!