Symptoms-- Waiting on diagnosis

[brett]

I have seen on this board a lot of great resources for HFI, and also some people that were eventually diagnosed with similar issues.  Our daughter is 10 years old, we have been looking for answers for her issues for over five years now and circled around to removing fructose.  While she seems to be doing better with it, she is still struggling.  We are now waiting on genetics results for HFI and a few other things. Here are her symptoms:

"Lows" seem to be caused by intake of fructose OR heavy exercise.  She has PE one day a week, on Wednesdays, and Wednesday nights and Thursdays are always troublesome.  I suspect stress causes symptoms to be worse as well-- we live in Haiti, so we have taken her out of school for up to a month at a time to go to the US for doctor's appointments.

She is definitely Dr Jeckyll/ Mr Hyde-- she can scream for two hours straight or more.  Fortunately, without fructose, these times only happen a couple times a month and no longer a couple times a day!

Before screaming, she can get slap happy or very whiny.

She loses cognitive ability-- she can't learn, can't do homework during these times.  Considering she has only been in a state of being able to learn about a third of the time in school-- she is not doing too poorly.  But this is definitely affecting her academically in a big way.  Without improvement, she will definitely get way behind in the next few years.

Bedwetting is still nightly-- and not just a little!  I am not sure if this is related or not.

Chem tests have consistently shown slightly elevated SGOT/ SGPT and lactic acid levels.  Recently, phosphates were high (I have read they are often low with HFI).  She had an Hga1c at under 4%, 4.2%, and 4.4% in successive months, showing hypoglycemia, but we have never tested below 60.

Does any of this sound familiar with HFI or other (CSID, FM, etc)?

She is the 4th child- no other siblings have HFI.  One had Hirschprung's that affected her colon and distal 3-5" of small intestine.  We are currently waiting on genetic testing, if negative we'll be more than likely opting for biopsies.

Her diet currently consists of dairy, fish, beef, chicken, eggs, popcorn, rice, potatoes, and tropical potatoes.  For spices we have reduced down to salt and pepper only, and on the popcorn a cheese powder that looks safe to us.  We have tried spaghetti, but we tried flavoring the sauce with whole garlic/ onions and removing after cooking-- and this resulted in a crash.  So, we need to try spaghetti again-- but there is always fear and trembling with trials!  Any advice would be appreciated!

[jenn123]

My daughter is 10 and confirmed HFI. Many of your daughters symptoms sound similar to what we experience. Especially the tantrums. Whenever my child get going, i no longer say a word. I just grab some white rice and chicken ( pretty much always in our refrigerator) and just start spoon feeding her. When she is out of sorts, she doesn’t want to eat or drink, just continue her rant. After she gets about ten spoonfuls, she begins to calm. Sometimes she knows what she said to me during this time, sometimes not. I am grateful to know what is physically happening so that i don’t take it personally. Lol.
In regards to garlic and onions, both have fructose so we have given them up completely at our house. I have not had luck with safe ways to partially use either. We just do noodles and salt/olive oil or with a light gravy with pasta.

[brett]

Thanks, Jenn! I am sure you understand, yesterday was particularly troublesome so it is great to get some confirmation we might be going down the right road here. Isn't it amazing how quick the tantrums end if we can just get her to eat a little bit? A little food on the tongue triggers so much...

Quick question-- what oils are safe? We used to use coconut oil for popcorn, but have stopped that. Does anyone have any trouble with regular vegetable oil-- canola or soy bean? (If she tests positive for HFI, I'll have to write a post of some of things we have tried in the last 10 years that are really wrong in hindsight! Confession being good for the soul and all...)

[gerri]

Hi Brett,

The oils I use are sunflower and olive oil - I don’t use any other kind.

[jenn123]

We do just olive oil and butter at home. My 10 year old loves, loves to make her own butter from whipping cream. Yes, amazing how they calm down quickly with food. And yes, very painful to look back at all the things tried that would have helped a non HFI, but harmful to HFI. It took me about a year to be able to talk about it all without crying or swearing as 9 years was a long time to be all specialized/doctored up with no answers and daily, weekly symptoms.

[hfimomof3]

I seem to remember there being another metabolic condition that showed behavioral crashes after exercise. It's on this board somewhere, you might have to look back through some older threads to find it. I don't remember the name. There are also things like fructose malabsorption. There are other disorders such as eosinophilic esophagitis and FPIES, but I don't recall those being associated with hypoglycemia. If you are in Haiti you probablly also have to be thinking about tropical diseases like various parasites, but I'm assuming your doctors ruled those out first thing? As I understand it, two helpful markers for HFI are that the child responds especially poorly to sweet things including fruit, and that such children, if allowed to choose which foods to avoid (ie not forcefed) will voluntarily come to reject sweet foods, especially foods that most kids like such as cake and cookies. There are some kids who are allergic to some kinds of fruit (like fruit with pits, such as cherries, peaches, pears) but can eat other kinds of fruit. whereas kids with HFI you would expect to have problems with all fruit: cherries, bananas, berries, etc. So you have to work out if it is just a couple kind of fruit, or all fruit. I'm assuming you probably have already worked through all of that.

If your child actually does have HFI, then factors you might consider would be that her liver may still be affected. My liver was still enlarged as a teenager even though I stopped knowingly eating sugar as an infant. I think this is partly because it is tricky to eat a diet totally free of fructose and because it takes parents a while to work out which things really do contain fructose. I was fed tomato ketchup, and actual carrots and tomatoes for years as a kid. It can also be difficult to find prepared foods that are free of fructose. I'm looking at you, storebought sandwich bread. (for a good sugar-free recipe you can easily make at home: www.kingarthurflour.com/recipes/no-knead-crusty-white-bread-recipe

Another issue you could be looking at here is micronutrient deficiencies. Unfortunately, our diet can become so restricted that we cannot really follow the normal recommendations for how kids should eat. i've always been told that it's important for people with HFI to have a vitamin C supplement every day. Sugar-free vitamins are difficult for our kids to find. But you should at least be able to get an unflavored vitamin C supplement at your pharmacy. If you are in the tropics, where there might be fewer options, you might have to ask your doctor to prescribe it (that is what my parents had to do as a kid). Soemtimes the vitamin C supplements on the shelf at the pharmacy are orange-flavored, that will probably not work for your child.

it could also be that the potatoes are not tolerable for your child. I sometimes find potatoes make me feel unwell. I've never been able to track down if this is because of fructose or something else because sometimes i eat potatoes and feel fine, other times, not so good. Your child does need some starch,, and potatoes have nutrients that are not present in rice, so if you think the potatoes could be a factor then you might talk to your doctor about this.

What are tropical potatoes? Do you mean cassava? I cannot eat cassava or yam. Or breadfruit. How about greens? Can she eat spinach? Watercress? Do you have something there called "green figs?" (I think these are like unripe bananas, and you basically boil them in their skins and then peel and eat. Most people find them disgustingly bland but for me they were delicious! They are high calore. But this is a memory from 30 years ago so my recollection is a bit fuzzy).

[brett]

hfimom, Thank you for the reply! Once the genetics tests return (hopefully any day now...), if necessary I'll check out some of these other diseases. We'll definitely look in to the bread recipe, as she has gone no bread for quite some time.

Tropical potatoes are the taro root. I have not tried cooking them in water for a while to dissolve out the fructose, then changing the water or blending them. People here do that with regular potatoes-- and it makes sense, but I had not thought of it myself. We'll try that, as we had been questioning the root.

en.wikipedia.org/wiki/Taro

Greens are hard to find-- the easiest one would be morenga, which I think the leaves might be ok. We were wanting to get her "more stable" with carbs to get blood sugar balanced before adding this in. We order spinach from the US-- it can only be grown seasonally here as it is often too hot. Green figs-- is this the same as plaintains? I don't know-- I would guess with both this and breadfruit that IF it is green enough, it would be fine, but once they start to turn, fructose would be present. But this is a guess on both breadfruit and plaintains. They are bland-- but very good when fried-- especially as chips! Thanks for the suggestions!