Elecare

[Concerned Parent]

hello, my daughter is 9 months old. She's just been discharged from the hospital after a week stay. The GI folks suspect HFI and we are awaiting her DNA test results. They've placed her on Elecare formula via an NG tube. The research we've done says that Elecare contains corn syrup solids which are sited on BU's web site as "Caution".

Does anyone have experience with Elecare with their HFI infant? Is breast feeding safer than Elecare? Can you recommend any Pediatric Physicians who specialize in HFI?

Thank you.

[Maggie]

hmmmm... I think I might know you somehow.... Either you're my husband or we are living parallel lives.

I got a couple of responses already about the Elecare...:

hfiinfo.proboards.com/index.cgi?board=misc&action=display&thread=783

[maggie]

I just spoke with customer service over at Elecare - they have literature saying that it does not contain sucrose, fructose or sucralose (the unflavored version). Assuming that info is accurate, it seems the elecare should be okay (and as long as those are the only ingredients to be looking out for). still don't know why she is not tolerating it though.

[CJSculpts]

Feb 8, 2010 13:53:51 GMT -5 @Maggie said:

hmmmm... I think I might know you somehow.... Either you're my husband or we are living parallel lives.

ROFL!! So awesome! Join us already! ;}

So the thing about Corn Syrup Solids is that if they are made for HFCS, then they are not okay. If they are made from "regular" corn syrup, then they might be okay. I would be very skeptical if the person answering a phone at a food or formula manufacturer would know the difference but I am cynical by nature.

For some layperson speak on the solids, look here: www.thefitshack.com/2007/06/19/high-fructose-corn-syrup-vs-corn-syrup-solids-whats-the-difference/
(Okay, I am cynical enough to say that this may or may not be 100% accurate too.)

I LOVED the Seinfeld reference at the bottom of the page. My mother's boyfriend was watching me pay bills the other day & stopped me when I started licking the envelopes to suggest that I might want to have my employee do that part. Wonder if George's fiance had HFI. Hmmmm...must find the episode. ROFL!!

[elilly]

I cannot comment on Elecare directly but I can tell you that the "corn syrup solids" in Neocate are NOT safe. Graham was on neocate as an infant due to misdiagnosis by our 1st GI doc and his liver enzymes were through the roof! If you have the option of nursing, I would pursue it. FWIW, I pumped for almost 3 months after Graham was on neocate "just in case" but of course we didn't know about the liver enzyme problem until months later.

[Maggie]

Interesting... I thought about requesting a liver function test while she's on the Elecare - do you think it's a good idea?

[elilly]

Do you have a "baseline" to compare it to? That would be ideal. If not, you could do a level (AST and ALT) but without a previous, you'd probably have to wait 2 months and recheck to see what the levels are doing to establish a trend.

[Tammy]

On the subject of needing a diagnosis -
I am a strong supporter of this. A couple of years ago we had a mother on here with a daughter that everyone - including the doctors- thought had HFI. The mother pushed for answers and after the liver biopsy it turned out that she did NOT have HFI. Now this is important because they then kept looking for the correct answer. Had they not kept looking, the child could have possibly continued eating things that were harmful to her, and also missed out on the benefits of eating fruits and veges that were ok.

Another reason that I've come across personally is a few years ago Regina ended up in the ICU for an un-related HFI issue. After a time there it became necessary to start her on tube feedings. The one the insurance co would pay for contained fructose. ONLY BECAUSE she had the diagnosis did they pay the extra $1000 a bottle for the one that didn't contain fructose. The doctors can only do so much without the DX. We've also run into the same thing with some of the testing they wanted to do.

All is fine now. She is back home and healthy and eating her diet, but I'm not sure that would be the case if they had damaged her liver even more while she was so sick. Her body probably couldn't have handled that on top of it.

[colormist]

I got a diagnosis to mainly quiet anyone who said my food intolerance was a psychological disorder AND because I was worried that I might end up in the hospital and have to deal with fructose in a setting where I was not in control. Now everyone around me knows I have HFI and I am slightly more confident in the hospital being able to handle me properly in the future.

[charlie]

I'm mixed on diagnosis. My main thing is how you get it and how long it takes. yes it clarifies things and if they are prepared to do clear quick tests then yes, you deal with it better and correctly. However here in England they seem to go the long way round and try everything else first and after so many blood tests, scans, lumbar punture etc etc etc I am left with a very stressed child who has just had enough and if I had stuck to my instincts we may have reached a conclusion more quickly. Even to get her now to talk to the school nurse about things when she came to our house for a cup of tea was a trauma.
However as Tammy has said if it isn't in the medical notes as a clear diagnosis there are certain things that may not be given appropriately. Maybe it is different in other countries but unfortunately in England there are alot of doctors who do not like patients coming up with diagnoses.

[ukbill]

At 9 months old can she not handle cows or goats milk?

Breast feeding is always best but for a 9 month old she very likely to need supplementing with solids.

I suggest as a start for a delicate stomach a home made ground rice pudding but and I cannot stress highly enough do not be persuaded to put sweeteners in it!

I can let you know where to get the ingredients and where to get it in the UK, which are very simple (milk and ground rice) and can help if you want and a recipe for making it. (although there is usually a recipe on the side of the bag just leave out the sugar!)

The main problem a young child will have is controlling its blood sugar level. if a child (or adult with HFI) dose not have food being digested then as the body switches onto reserves ie converting body fat back into blood sugar however we create both Glucose and Fructose.. so we feel ill and "down" as a result.

Certainly as a child I was constantly trying to balance food intake to activity. I still do if I have any heavy physical work to do, I need to eat 4 or 5 hours before hand to ensure I do not go "weak" and feel ill as a result of burning all the glucose I am producing from digesting food.

So I suggest regular small feeds, do not trust labels on preprepared foods.. make your own always! Plain Yoghurt is good too.

I am constantly caught out by pre-prepared foods that claim to not contain and added sugar. Luckily I can detect by taste refined sugar and so can protect myself from a lot of damage that way.

DO NOT feed anything sweet tasting to your child or things with added Glucose, Maltose etc.

I'm aways avalible to help if you need any advice.. most importantly Don't Panic.. help is at hand.

[Maggie]

thanks everyone...

I just spoke with her GI doc, who agreed that something is not right with our method of feeding at the moment - she's been vomiting with every feeding and having diarrhea, despite the fact that she's on elecare.

The plan is to try breast feeding again tomorrow. most infants can do well on just breast milk for the first 12 months of life, so we're not so much concerned with other foods at this point, especially because of the suspician of allergies. Cow's milk protein is a no-no for her unfortunately. I will talk to them about goat's milk though, if we need some more calories. We're also dealing with an aversion to purees/solid food and spoons, so we're working with a therapist for that - I don't blame her - the couple of times she's been spoon fed has led to ER visits.

I think the first thing we're going to try are pureed meats. I pretty much make everything from scratch around here because we have other restrictive food allergies in the family (dairy and gluten), and I know how sneaky ingredients can be in processed foods!!! I'm shocked at how difficult it is to really confirm the absence of the 'not tolerated' sugars in foods (after much debate and research with her doctor yesterday, we found that pedialyte is NOT safe - it has some fructose in it - just for anybody out there who is looking for that information!!)

[CJSculpts]

Hi Maggie & Mr. Maggie, I was thinking about this situation yesterday and something popped into my mind. One of the considerations for allowable Fructose consumption is total grams per day. I am would think that this amount would also be influenced by the amount of other nutrients, etc., consumed as well. Maybe someone who has dealt with HFI for longer could explain this better.

Considering the fact that the Elecare is 50% Corn Syrup Solids (I think that's what I remember you saying in the other post), I would think that even if they were "safe" Corn Syrup Solids, this qty and or ratio would be overwhelming to a tiny little already overwhelmed system.

In my own (only slightly educated) opinion, even if I were to allow them into my diet, I would suggest relegating Corn Syrup Solids to a very minor portion of total ingredient intake. As an example, in the popcorn & chip section at Whole Foods, there are some that seem to use C.S. Solids as a flavoring. For now I have decided to choose items that do not but I might try one that does out in the future. No way would I consume something that had C.S. Solids as the first ingredient let alone if this was the among many other food items that I was eating during the day.

UKBill, I am confused. Isn't Glucose/Dextrose one of the main OK sweeteners?? Glucose cannot be broken down into Fructose. Perhaps you were meaning to say no Sucrose??

[CJSculpts]

Sounds like a good plan Maggie. Quick note about the meat: make sure to verify that it has not been plumped, brined, or otherwise messed with. Unfortunately, many commercially available meat & poultry products have been messed with even though the do not appear to be "processed" meats.

[elilly]

Maggie,
I sent you a private message. Check the top of your screen. Thanks.

[maggie]

elilly - I just joined as a member - I don't think I could get messages before when I wasn't a member - at least I didn't see the messages thing at the top. Can you send it again? Just make sure it's to the gold 'Maggie' and not the white 'Maggie'

[charlie]

That sounds great Maggie if they are going to let you go back to breast feeding, it seems the most sensible course of action and yes try the pure sourced meats and homeboil white rice maybe, anytime Megs is having a rough time I put her onto chicken and plain boiled rice using some of the chicken stock and it settles her system well. In fact she lived on it for over a week when first diagnosing her.
good luck.
Charlie

[charlie]

About the glucose/dextrose bit. Not everyone can tolerate it still and you have to be careful of its source and how pure it is. Megs struggles with it so I have taken it completely out of her diet again.

[ukbill]

Don't forget white fish (pollack, cod etc) poached in a little milk is very good and nutritious too, and not too hard on the tummy.

In the USA the Glucose / Dextrose is made in the same factories and possibly (probably) using the same equipment as they use for the production of Fructose.

Its also made from Corn Maize which has a 1 to 5% sugar content in it to start with!

Contamination is very likely!

Avoid if you can.