toddler symptoms with HFI

[charlie]

Looking for help from sufferers. My toddler is 2 1/2 and still not fully diagnosed but seems to be heading that way. Just wondered if anyone come across related sleeping problems with it. Whenever she has any suspicious foods she seems to be hard to settle to bed at night and then wakes alot crying. especially between 11 and 3 am. now is this a toddler problem or an HFI problem ie is she experiencing pain and why at these times.
also is there an accumulated problem with HFI, ie can she tolerate a few sweet veg but a build up over several days creates the problem. Grateful for any advise as consultant not much help:-/

[Tammy]

Hi Charlie
This is always hard with toddlers when they can't tell you what hurts. My daughter doesn't have any sleeping trouble with this, but the first thing she gets is a migrane, followed by vomitting and dirrerhea. I have heard others say they don't have any symptoms until they have a liver function blood test. Maybe the degree of severity of HFI? The best thing is probably just to watch for patterns. I know this isn't much help, but that's another problem with HFI. Everyone can be just a little different.

My daughter will accumulate it. She can tolerate broccoli about once a week or so. But if she has it every day, she doesn't get the migrane like with sugar, but she will get the dirrerhea. So some things that have trace amounts will build up with her. Of course she is pretty severe so it doesn't take much for her.

Also, if she gets a small amount by accident, it takes 2 - 3 days before it affects her. So keep this in mind when you are looking for causes and patterns.

Hopes this helps a little even though it doesn't really answer anything. I'm certainly not a consultant, just a mother who's been dealing with this for 20 years. Glad to help anyway I can.

Just one question, what are you considering "suspicious foods"? Maybe I can help in that catagory. Whether or not it is okay.
Tammy

[charlie]

Hi Tammy, thanks for reply. still getting used to foods. Have read on websites permitted veg but it seems so limiting. Have tried her on avocado and cucmbers, both of which she likes and are easy for snacks.
Also not sure if you have same in America, we are in Britain, tried sugar free jellies which didn't list fruits or sugar, had aspartame made by Rowntree. She loved these. Also more savoury things that listed Dextrose or Glucose Syrup, such as fish finger, sausages or pate spreads. Sleeping got worse as these were added but then the weather got hot too.
She gets such a bloated tummy.
think i need to get tests done but don't know what they do in this country as so much guesswork involved.
Thanks for help and website don't feel as floundering so much
Charlie

[Tammy]

Hi Charlie,
Since our foods are different, you are probably doing the best thing, which is just keep checking ingriedients.

I have no idea how they might test for it in your country, but since Europe has many more cases of it than we do, I'm sure they can. Another option may be for your doctor to contact Dr Dean Tolan in Boston, Mass, USA. He seems to be the most knowledgeable in USA. I'm sure he'd work with your dr to find the results.

The vegtables are rather limited, but we have enough things in this country made with artifical sweetners that having snacks isn't a real hard problem. You just have to be diligent in your search for them.

I'm glad this at least helps a little bit.
Tammy

[jenferg]

Hi Tammy, My son is 17 months old and is suspected to have HFI. He was seen at Children's Hospital in Philadelphia and the DNA test has not come back yet. We are pretty sure that he has HFI as we totally eliminated all " no" foods from his diet and he was doing 100% better, but just as I have been reading in the latest replies, he sometimes has a cumulation effect and cries at night and does not sleep well at all. This web-site will be very helpful as we try and find things that Bailey can eat. My question right now is, can children with HFI eat "sugar-free" Oreo cookies? They are made with sugar alcohol. His sister loves Oreo's and he begs for them. We don't give hime "regular" Oreo's but thought "sugar-free" would be okay. Thanks for any advice. Jen f.

[Tammy]

Hi Jen
I checked out the Oreo page and it doesn't list any sugar free oreos. Is this something new, or is it a generic brand? If it's a generic brand, what all does it have listed in the ingredients? The big thing to watch for in chocolate items is sorbitol. All the chocolate cookies I've ever found have sorbitol or sucralose in them. If you have found some without either of them, please let me know what brand they are. My daughter would be thrilled.

Since you are working with the childrens hospital in Philly, are you from near there somewhere? I am located right in the center part of the state.

[kerrynz]

Hi Tammy

Tha'ts great yes i think you hit the nail on the head. Zanoah understands very quickly but answering back is slow. But the other day she did something new, instead of that stare when she was asked to say "hear i am" at pre school she looked for a while at the teacher and said I Can't So is this part of fructose or what. I even had one person say go to a speech help but i figure until i know the foundation or where it's coming from i could just annoy her.

Another question in pasta what flour do you use i seem to be hitting a brick wall she will eat one meal then says no until she has forgotten that she did'nt like it.

I understand the peanut issues and your daughter don't have it. But did i hear fred say old fashioned peanuts with no inclusions he has tried? I gave her some she seemed ok then thinking all nuts were ok i branched of into almonds OH Dear she eventually got over it. LOL

Thanks again
Kerryn

[Tammy]

Kerryn
20 yrs ago, ONE doctor told me that Regina's brain could have been affected by her liver cirrhosis. It was so bad that the liver wasn't cleaning the toxins out of the blood, which then caused brain damage. Dr Tolan now says that he never had any cases like that and none of his patients have that trouble. So who knows for sure? Regina also has a slight variant of HFI. So maybe that is it, Unfortunately this is something that just seems to create more questions the harder you try to find answers.

We tried the speech therapy for awhile. Didn't seem to make any difference. Thats not to say it won"t help your daughter. We also tried physical therapy, but she fought against it so hard that she actually made more progress when we didn't take her. Bull-Headed little thing.

As for pasta, I am a lazy cook and I just buy my pasta already made. When I do make anything for her, I always just use white flour. She doesn't have a problem with it, and I've long ago stopped trying to make things fit into our category of "healthy". The best for her is just plain old white flour. Maybe your daughter just doesn't care for it, unrelated to fructose. (Like Fred and eggs) Regina loves pasta and she loves cheese, but Macaroni and Cheese she can eat or let it lay on the plate. Bull-Headed little brat. ;D

The big thing to remember is that they are still kids. And kids will be kids. They'll like one thing today, and something completely the opposite tomorrow.

[bailey]

Tammy-
The sugar-free oreo's have maltitol, dextrose, acesulfame potassium. poly dextrose, and sucralose as sweetners. Are these okay? I was wondering if there is some way we can have a page here where everyone can just add foods, especially name brands that are sugar-free. I enjoy reading all the info, but sometimes I am strapped for time and don't have time to read the entire post to find out what I can give my son. We are so new with this and very overwhelmed. We live in a very small town and most of what I buy for him I have to travel one hour to the grocery store to get! Thanks for your support. I would be even more overwhelmed if I didn't run across this. One other thing, I hav efound other web sites, none as informative as this, but I was thinking that maybe we could start a HFI Foundation that would unify al this great info. Jen F.

[Tammy]

sucralose is Splenda. Oringinally some thought that it was ok. Now more and more info is against it.
I gave it to my daughter one time, and it made her sick. I would advise not to use it.

[Tammy]

Regina gets very sick with a very small amount of fructose. So I pretty much use her past experiences as my guide.

Maltitol. She eats this all the time. She doesn't have any problem with it. Right now she eats a chocolate muffin made with Maltitol and acesulfame potassium every night as her snack before bed.

As we've said before, that DHI list is so far off from HFI that I don't even consult it. I really think it'll cause you more trouble and confusion than it will help.

So for us, Both Maltitol and acesulfame potassium are ok.
As far as polydextrose, I'm sure I've given this to her with no problems. So if it is a combo with sorbitol, that's something I didn't know.

Fred? What is ok for you?

[jenferg]

To Anyone in the forum-
Bailey, my 17 month old is doing much better, but lives off of preztels, saltine crackers, green beans, a little pasta, and potatoes. I am continuing to search for more foods that he can eat. Please help with specific name Brands if you can.
I am confused about Maltitol? I thought that was sugar alcohol and was forbidden?
Thanks for any helpful hints? Jen F.

[lisa]

Nate's always had one medical problem or another, but they all seem fairly mild compared to what you have described. He was a preemie and spent a month in the hospital after birth. When he was 2 months old, he was diagnosed as having gastric reflux (GERD) and spent until age 1 on both zantac and reglan to reduce his vomiting. I now wonder if this was somehow related to fructose intolerance or if it was really just due to prematurity. He never really stopped vomiting altogether. If I watch him closely, I can see that he still does, but he swallows it (Gross!). He is still doing that, even on the new diet, but it doesn't seem to bother him in the least. His mouth usually smells pretty sour.

Anyway, as I get further into this, I just wonder how much is related and not and whether the fact that he is still having some issues means that we haven't entirely figured out what's wrong with him, or if I just don't have the diet quite right. I'm sure my husband thinks I have gone crazy and that all of these things will just eventually go away, so I shouldn't stress over them. I just can't seem to help it.

Most of my other questions are related to allowable foods and quantities, but I have a feeling that is going to be trial and error. Since he doesn't really look like he is not feeling well, it is hard to tell when something is not good for him. I was so happy to find the dextrose (and he was so happy to eat foods made with it - cookies & koolaid) that I did not control the quantity until I saw the resulting diarrhea. Now I don't know whether that means that he shouldn't have any or whether a reduced amount is OK.

[lisa]

Fred,
What kind of cereal have you been able to find without sugar?
Thanks, Lisa

[lisa]

Fred - Thanks for the cereal suggestions. So far I've tried the cream of wheat and oatmeal without success (he used to eat both but now won't even take one bite). I may try shredded wheat next (since I like it and will eat even if he doesn't).

Kristen - I sent you a separate e-mail on the preemie stuff. Looking forward to talking with you more about that.

[lisa]

Fred,
Hooray! Shredded Wheat is a hit. Thanks for the tip. He actually asks for cereal in the morning now and it has helped to get him a little more regular.
Lisa

[Tammy]

Regina does fine on it, also. I usually get the mini size so it's easier for her to eat. I can get Post or my local supermarket brand.

[lisa]

I grew up on shredded wheat with hot milk, a bit of margarine and brown sugar, so that is how Nate eats it (well, with stevia instead of the sugar). He can actually tolerate 2 days in a row. I have not pushed it beyond that yet.

So far this means that he has had 3 days with "normal" BMs. As Fred suggested, we avoided getting one with the added bran.