Fructose in breastmilk

[charlie]

I have put this in a new thread as it is coming up at the moment on several so getting confusing. This is sort of directed at Nicole at the moment but may be others who may be interested.

Nicole, this isn't a personal attack (honest) but I have been reading many comments recently from you about your daughters reactions through your breastmilk but haven't responded because I wanted to do a bit of research first. This also came up in 2007 I found on one google search so will link back to there too but I really don't think the reaction your daughter is getting to your breastmilk is an HFI one as nowhere can I find that fructose passes through in the milk and I have trolled through lots of pages.

One of the main defining things about HFI is that it starts as soon as the child is weaned but has been perfectly fine while being breastfed. Nowhere can I find any reference to fructose as a constituent of breastmilk as the mother will have already converted it safely in her system.

However one interesting thing that pops up is Oligosaccharides which is one of the sugars that those with malabsorption syndromes such as FM cannot tolerate, so I wonder if you need to consider more down this path, especially if she is reacting to small things in your diet. Here is a link to a page that has a very comprehensive list of the constituents of breastmilk.

www.analyticalarmadillo.co.uk/2010/10/ask-armadillo-whats-in-breastmilk-but.html

I do still think you need to look elsewhere too for answers for your daughter, I am in the process of updating our journey having been through a very similar journey to you 10 years ago and have said before how things look so black and white when they are little and they seem to be reacting to the tiniest thing but as they get bigger that does change. There are various things you are posting that say to me, I'm not so sure, white rice is one of them that springs to mind, that indicates a more starch thing.

I digress here slightly but there seems to be a new buzzword on this board about double zero sufferers of HFI, cannot source it at the moment but will have a rummage or happy to be corrected as I'm not really sure it is an accurate explanation so before spending alot on further expensive HFI gene tests etc I would step outside the box and think a bit more laterally, maybe start from scratch again and not focus on the fructose for a bit and see if anything else springs up.

This is the link to the old page:
hfiinfo.proboards.com/index.cgi?action=display&board=Children&thread=212&page=1

[nicoleh]

Hi Charlie,
I'd like to respond more thoroughly when I have a bit more time, but a few comments for the moment:

-white rice - not 100% completely positively certain she reacted to it, but it looked like it. given that she also reacts to things I eat, I may have made a mistake in my own diet that day and not realised it. There is some fructose in it, and her tolerance is very low - and it seemed better when boiled and drained. I know most HFIers can have it, but not all - and presumably most would boil and drain, rather than cook and keep the liquid? anyway, yet to re-try.

I don't think starch can be a problem as she is definitely fine on tapioca and cornstarches.

Both metabolic doctors went through all the different possible known conditions with me, and both ruled out CSID, FPIES, coeliac, lactose intolerance etc.

If you can think of any food nutrients that are present in any fruits and veg, wholegrains, nuts, sugar but not present in animal products or starches then do point them out as I can't think of any others myself.

we definitely won't be getting any expensive gene tests done - they are out of our price range.

I really don't think oligosaccharides are a possible candidate because breastmilk always contains these - they are synthesised in the mammary gland - regardless of what mother eats. Since she has had plenty of times when she was perfectly symptom free on my milk - only once I cut out fructose of course - then it doesn't seem possible that she reacts to oligosaccharides.

more later on fructose in breastmilk - but first - on that old link, there were 3 mothers who thought their babies reacted to their milk. One said she knew for certain that "Angelina" reacted even when only fully breastfed, if her mum ate fructose. Plus the lady known as mumof3 said her 11 week old fully breastfed baby had fructose in the urine at hospital. that fructose in her urine must have come from the diet. so it obviously was coming through in that mother's milk.

What do you make of these three cases?

books.google.com.au/books?id=DHtERWm0mrcC&pg=RA2-PA242&lpg=RA2-PA242&dq=fructose+%22human+milk%22&source=bl&ots=U6dkTrloTJ&sig=0qXTJKY6JL9pDqWnOEz2SmdgmIo&hl=en&sa=X&ei=xzb-UYvECKmiigeKnIH4BA&ved=0CFIQ6AEwBw#v=onepage&q=fructose%20%22human%20milk%22&f=false

page 242 of this lists fructose as one of the monosaccharides of human milk

www.benthamscience.com/cvp/sample/cvp7-4/012AD.pdf
and the table in that article lists the mammary glands as normal locations for the GLUT5 fructose transporter and GLUT12 fructose/glucose transporters. So question is - if the transporters are present on the cell membranes - why would fructose not be transported in?

there's more evidence but that's what I'll post for the moment.

I've seen the studies that look at the carbohydrate composition of breastmilk. these are usually used to prove that it's fructose-free - but actually, when I look at the full text of most of these studies, they don't bother testing for fructose at all - they just assume it's not there.

Plus even if they did look for fructose, it wouldn't prove that it's not in my milk. there are multiple reasons why it might be present in mine, but not in studied milk:
1: interindividual variation - maybe only 10% of women secrete fructose - maybe I am one of them, and the studied women were not
2: fructose is broken down in the liver. my liver is in a bad way. I probably have more free-fructose floating around than other women.
3: fructose transporter (GLUT5) gene expression is increased in the presence of more fructose (happy to supply really boring reference if desired)- so if my blood has more fructose because of my bad liver - my mammary glands may transport more than other people.
4: if dd has HFI, then I am, by definition, a carrier. Science knows for certain that HFI carriers process fructose less efficiently than non-carriers - thus increased levels in plasma again. I have never seen a study of an HFI carrier's milk.

In terms of HFI infants being fine when breastfed - there's 2 easy explanations for this, if the fructose is in breast milk.
A: baby may not get enough fructose in the milk to bother him/her - all have their own tolerance levels, and of course the milk has to be pretty low.
B: the symptoms that baby has on milk alone, if present, are not likely to be easily recognised as HFI - especially since all specialists won't consider HFI in a baby that's fully breastfeeding because they consider fructose intake to be zero at the time - so no fully-breastfed baby would ever be diagnosed with HFI. how do we know that some of the unexplained liver-failure deaths in fully breastfed babies aren't due to HFI?

Even if they're not really really sick, they may be chronically unwell - probably diagnosed with colic or reflux - but no one knows. Then when you add in solids, the symptoms are much more obvious and awful - that in comparison he seems like he was "fine" before the solids - but was he really? My DD was always off from birth. always vomiting, always screaming. we would have thought this was normal if she was our first, but as our third, we were experienced enough to know that something wasn't right. even when she stopped screaming (which, incidentally, only happened when I stopped eating melons, apples, pears, stone fruit, bananas and juice!!!) she was still vomiting at lot, and we, really experienced parents who work in health care, didn't think that there was much wrong with her. Only now, a couple of months ago when I removed all fructose from my diet, did she stop vomiting up my milk. and only now is she not a nightmare to feed - she always used to fight me. it changed in literally 3 days - 14 months of fighting and vomiting gone. and until that change, I didn't realise there was anything still wrong with her. If we didn't recognise it - would anyone else have? In other words, maybe all these HFI babies really are less-than-perfectly-healthy on breastmilk, but no one notices.

It would be super interesting to ask parents of officially diagnosed HFI babies who breastfed - in retrospect - was your baby a healthy, easy baby? or was there lots of diagnoses of colic and reflux?

anyway, it's freezing, I'm off to warm up.

oh, and I agree with you about the double zero thing - I'm not sure about the term.

[ukbill]

So far as my mother has ever said I was fine as a baby until she tried to bottle feed me (cows milk with added sugar was the method used by everyone back then because there were no formulas etc.)

I drank the first bottle but refused all others.

My mother was never one to eat much sugar or sweet foods and sugar had been on Rations for the previous 10 years because of WWII unfortunately we had a socialist government after the war and they kept rationing going far longer than required.

Rations were at their most restricted for the 1st year after the war when all food ships were stopped from Canada and the USA (again thanks to our Socialist Government again. )

[charlie]

Right, calmly now Charlie.......................

I have had a quick look at the links you sent Nicole, thanks for the info, unfortunately couldn't access the first one but the second I really don't think is relevant to this. It is very interesting though and gives a little more insight into the glut transporters which is of interest for me as this is still a path they are going down with Meg due to her "odd" sugar problem but as for an explanation about how it can get into breastmilk I really don't know about the relevance but I will study it further when I have time.

Due to lots of extensive lists of hundreds of items that are in breastmilk I am pretty certain someone, somewhere has tested for fructose thoroughly as well as all the other sugars. However, if they are testing yours it will be interesting to see?

I posted the link to the old discussion about this as I hoped you would notice who had contributed what. The question was posted by someone whose children have DFI as it was called so prob FM, and feeding other stuff that has fructose in it,
Tammy who has a confirmed case said No
Chelsea, a lactation expert, said No
Fred obviously said something interesting (as always) but that has been deleted.
The next 2 don't have a diagnosis, be interesting to track them down the line and see what they found out but I bet it turned out not to be HFI
SarahK, an old member with great experience and a firm diganosis says No.
Colormist, as firm a diagnosis as you will get said No.
Do I need to continue?

So I do think maybe you need to start rethinking your theories. Thankyou for sharing the extra information about yourself, I know it is hard in the public domain to put all the history out there but there is clearly a big problem going on with your health and your daughters so yes, you are right to pursue answers but please listen to them. Now I am not disputing the fact that there is a possibility that your daughter may be reacting to your milk as only you know exactly what she is having, when and how but several have now tried to tell you it is unlikely to be an HFI reaction. there may well be something else in the milk that is causing the trigger.

If you feel strongly that she is reacting and you cannot identify what then there is another solution which only you will know whether it is right to try, now she is 1 year old stop breastfeeding altogether. If whatever you are producing is the trigger and you keep everything else the same and she improves then that was the answer and most babies nowadays are off the breast by one year old. But keep it the same, keep it simple for a long time, I do get confused with your posts about does she or doesn't she react to something, eg the rice.

Alternatively, if you are still trying to feed her veg and fruit in whatever little amount and she is ultrasensative to them then it may just be the milk just unsettles an already unsettled system.

Anyway, I'll leave this subject now as I don't think I can go further with it. But I am concerned once again about confusion it may bring to guests and new members. We average probably somewhere in the region of 150 guests and a few of those each day may be actual sufferers looking for direction.

So, with respect, You are obviously a very educated lady who has done alot of studying into nutrition but sometimes you need to step back from your training and think like a mother who has little knowledge but alot of instinct.

[Tammy]

Yep, supporting Charlie here.
Regina is confirmed HFI. She was breastfed for 4 months and not an issue. And I ate everything sweet I could get my hands on. No liver issues until we started her on fruits at 6 months.

[nicoleh]

Did she have colic or reflux? did she cry a lot?

This is something you've posted about her on the 'how you were diagnosed' thread:

"She ate everything, she didn't get sick back then, had no GI issues, she had no behavior problems, she was small, but always stayed on the very bottom of the charts. The only thing that kept the Drs looking was the liver.

The liver became an issue at 7 months. She was BF for 3 months, then put on a formula that, just by luck, happened to be safe for her anyway. But then comes apple sauce, etc. We got her DX at about 2 1/2"

1st question: You said that she ate everything, didn't get sick and never had any GI issues, even when she was eating fruit at 7 months. So how would you know if she was reacting to your breastmilk - if she had no signs of a reaction?

2nd question: you say no liver issues until 6 months. Did you get her liver tested when she was a younger baby? how do you know that there were no liver issues starting to develop earlier than that? most people I know don't get babies blood tests or liver ultrasounds just for the fun of it - so I can't imagine that you had done this. How do you know that the liver problems that you saw at 6 months hadn't already been there at a lower level?

3rd: Regina tolerates some vegetables on occasion, from what I understand and therefore has a tolerance for fructose, whatever that level is. How can you know whether or not the level of fructose in your milk may not have just been a level that she tolerates? (My DD reacts to crazy traces of fructose. (1/3 of a brown rice (sugar free) cracker gave her a hypo). So there may be a level in breastmilk that was fine for Regina but is not fine for DD.)

I would be interested in your answers, thanks.

[Tammy]

I'm going strictly on the liver issues. You are right in that she wouldn't have had any symptoms, but she would have had the liver problems. Her liver was fine until 7 months. About a month or so after starting fruit.

She was never colic, never any reflux, was a very happy, calm, serene baby. And she was my 3rd so I did have others to compare her to. Plus I come from a large, close family.

How do I know the problems didn't start sooner? Because she had other issues, unrelated to HFI, that the doctors were already watching her for. These are her CP issues. There were present from birth. They were watching her much closer because of this.

I'm also going by what the doctors have told me.

Yes, she can eat very small amounts of veges once in a while, but in your example, no she could not eat brown rice crackers. She can't eat brown rice, only white rice. She wouldn't be able to handle those crackers either.

So I stand by my statement that I agree with Charlie.

I'm not saying your daughter doesn't react to breastmilk, but if she is, then it's not just HFI your dealing with. I really think you should follow Charlies advice and start thinking/looking at other possiblities. Either as a completely different problem or as a second condition along with HFI.

I would hate to see you miss something important because you're trying to bend HFI symptoms to fit your daughter even though everyone on here is telling you the same thing.

[nicoleh]

Thanks Tammy. I wasn't aware that Regina was having tests earlier; now I understand. from the sounds of her case, your milk definitely didn't have any (or more than the traces she can tolerate) fructose in it.

Unfortunately that doesn't really answer the question of whether or not it CAN have some in it. In particular cases it seems to have, and the one Charlie didn't address in particular is the baby with fructose in the urine in the old thread. whether or not that baby had HFI or DFI or fructosuria or nothing at all really is irrelevant - the question is - HOW did the fructose get in that baby's urine if it was 100% breastfed, unless it came through the milk? Unless we want to call the mother a liar, I see no other explanation. It was only 11 weeks old so I do believe the mother that it was fully breastfed.

In terms of considering other conditions:

Our metabolic doctor has a reputation for being the best in the state, and he is experienced with HFI. He has spent time researching different conditions and says that he believes DD does have HFI. when I told him about reacting via the milk he expressed doubt about the possibility but did agree that my case may be different due to my liver damage. His primary objection after that point is that he did not believe that the mammary gland contains fructose transporters (the GLUT5 etc mentioned above) so he didn't believe it was possible for the gland to absorb fructose from the blood stream into the milk. However he isn't an expert in lactation or in mammary histology - and the research I linked Charlie to above indicates that he is incorrect, and fructose transporters are present. My own lactation consultant, who is in high demand to lecture on lactation all around the world, also believes that fructose can pass through SOMETIMES. So the next step to take is obviously to test the milk which is in process as we speak. Then we know what to do. For the moment he wants me fructose free myself, aside from last night for the test.

On the other hand I do agree that she must be reacting to something in addition to fructose, and that something must be coming through the milk (or in the air) as her diet has been stable for a long time now and she was great for a few weeks there, but then I started getting more liberal with my own diet and the problems started up again. Because I am not eating any fructose and she still has low grade diarrhoea at the moment, there must be something else as well. I have made a few mistakes lately but not enough to explain all the days of diarrhoea. This arvo I think I may have hit on it. She reacts badly to olive oil which I've been told by a few people (inc lucky) may be because oils are hard on a raw system (and my own study confirms this in many people). I have removed olive oil but I was still eating potato chips cooked in other oils. This may well be the thing that is keeping her sick at the moment. It isn't the same as when she reacts to eating fructose, this is just diarrhoea. I will remove all oils a bit more carefully now.

In terms of possible weaning - no way. she can only tolerate breastmilk, meat, eggs, and 2 starches. to remove one of her 4 types of food tolerated would be putting her in serious danger of malnutrition. and no, I would have to be very silly to be giving her any fruit or veg. definitely no way she's getting any of those.

[charlie]

Unfortunately the mother only posted as a guest (not sure if she has become HFImomof3 since?) but we don't know the outcome of her child or any other history so as to whether or how much fructose was in the urine we will never know but that thread came up first on my google search of fructose in breastmilk which is why I am cautious about going too far down the wrong discussion and worrying other potential sufferers unncessarily about it.

As for your daughter tolerating your breastmilk? are you sure she is? cause that isn't the impression I am getting from your posts and if you remove one potential trigger then that may open up other options? Does she not have dairy at all, is that because of lactose intolerance? therefore could it just simply be the lactose in your milk? If not why don't you try introducing dairy? I don't know, only you will know if it is the right thing to try. We really are trying to help you but I really am not sure we can, I have been where you are so I know how entrenched you can get into analysing everything but I will repeat that sometimes the picture opens up more as it did with my daughter when you take a step back and look down another path. There are so many metabolic problems and when they are tiny everything reacts that bit more.

Maybe Claudia, Carlitos mum can help, he is only one and I think the boards youngest most recent diagnosis so maybe she is the best one to help you tailormake a suitable diet to try for now that will help your daughter thrive as by the sounds of it he is up and running and she has done a great job with him.

Anyway, I don't think I can help you any more, I have a life to live so I will leave others who are maybe more patient than me............. and have a definate diagnosis as we still don't have one. Good luck, please listen to those who are genuinely trying to help you through what is a very tough time and hopefully you will find the answers you are looking for.

[lucky]

Nicoleh,

There are two sayings:

* The devil is in the details
* Hindsight is 20/20

If you are lucky enough to be having your breast milk tested, you are in a far better position than most to have answers -personally-. Wait and see. The results may prove your fructose suspicions correct, or it may show another unexpected reason behind your daughter's digestive issues, or ultimately, even prove unremarkable (and therefore "safe").

Hindsight is 20/20.
One day it will all make sense. Or, more sense. But for today, don't drive yourself crazy trying to figure things out. Until you have formal testing results of some sort (and exclude potential issues), you will be stuck in a swirl of possibilities.

[Tammy]

okay Nicole. I don't for a minute believe that fructose is in breastmilk. BUT for the sake of argument, lets say it is.

If it's your breastmilk that is the problem for your daughter, then treat it the same as any other problem food. Eliminate it. She's a year old. It's time. You can just give her regular milk, same as any other toddler. But no............ you can't do that, you have a sick child......

So you have problems, you have possible answers that you are sure are right, and you don't want to consider ideas that aren't yours. You won't even believe your "best in the state" doctor when he tells you because it's not the answer you wanted.

There was another mother on here years ago who was the same as you. She had no diagnosis but KNEW she was right. She also tried to bend HFI to fit her son, even though everyone told her it wasn't. She tried to tell other new mothers what to do for their kids based on hers, even though it wasn't the same as everyone else on here.

So I will now just put you in the same catagory as her....... A mother who is the type that is "Oh poor me, I have a sick child. Feel for me because I can't eat something because my child will get sick" Oh the drama, drama, drama. Sorry, you won't get any sympathy from me when you know all the answers.

I wish your daughter all the best of luck. I think she's going to need it......

Guess I was a little harsh here. Must have caught me in a cranky mood........

[lucky]

Perhaps there is a safe middle ground...

If test results on your breast milk are expected within days -wait-

If longer, how about discussing -with your doctor- the option of trialing a safe formula (wean slowly to avoid constipation as system gets used to it) WHILE still pumping to preserve your milk production. That way, should there be an issue, your daughter still can resume nursing if necessary.

If your daughter is more stable on the formula, at least that is one less confusing issue in her diet.

[nicoleh]

I'm sorry Tammy that you think I'm all drama drama drama. It was not me that started this thread. I have not complained here that I am on a fructose free diet, and I certainly haven't asked for sympathy. I'm sorry that you feel the need to resort to insult - I hope that you are able to ignore my presence on this board from now on, because I hate to have brought out the worst in you.

Charlie,
that mother did say that when her daughter was in hospital she tested for having fructose in the urine. that was done. it doesn't say how much - I don't know that it matters. I just thought it was potentially evidence that some fructose must have been in that baby's breastmilk.

H has had a bad reaction to cream a few weeks ago. It seems that the cream was actually a bit "off" (her sister was a bit wobbly-tummied the next day too), but since I can't be 100% positive that it wasn't a reaction to casein (as her sisters used to have) I can't put her straight on milk until I have her stable, without diarrhoea, for 2 days to test it. Otherwise how will I know that she's reacted to it or not? It isn't a lactose problem, she was fine on my milk for a whole month until I changed my diet a bit (and started having more oils as I now realise was probably the problem.) She hasn't had any diarrhoea today or yesterday arvo which is practically a record for the past few weeks so hopefully we're on the up again now with it.

If all I have to do to get her tolerating breastmilk is change my diet then that's a small sacrifice to make. It is so far and away better for them than any other kind of milk or formula that unless there's no way to get her to tolerate it I won't wean her, especially not since it's not a reversible decision, but I am certain that she tolerates it if I eat the right things.

We are under the care of a good dietician and the metabolic specialist has a plan that he wants us to follow and he wants to investigate HFI further through the diet (including WANTING me to remain fructose-free until the tests come in, as he himself has enough doubts that it could come through that he's thinking better-safe-than-sorry, as am I.) So it is not that I am not willing to accept other ideas, but we are already considering other options, he has investigated other options and honed in on HFI, as have we and our GPs, and the kinesiologist, if that means anything - there are only so many people's opinions that we can follow.

I have got the list of foods that Carlitos can tolerate and I am going to use that as a guide of things to try next - we would have tried many already if she had been stable these last 3 weeks. The dietician is working on a similar list with us too - it's all covered. (and yes, dairy is at the top of that list) Hubby and I both feel that we should pursue what the met specialist wants us to do wholeheartedly (which is what we are and have been doing).

Charlie I appreciate that you do mean well and are trying to help (and thank you for being civil). Rest assured the doctors and we are doing all we can; I will ask for help if we get stumped (thus the question about the spinach). And you don't need to try to convince me to eat fructose - I will go by the doctor's advice on that and am not complaining in the meantime. If I need to eat an HFI-safe diet for this reason though, it is very difficult for me to hide the fact that I am doing so when I post on this board- my diet is much more complicated than DD's, thanks to me wanting to eat more than 5 foods - so I often have to ask about what I can and can't have. I really can't pretend that it's for DD or that will get really confusing later on. So I'm not sure what you want me to do other than not post at all. I don't think that I have posted any fructose-related advice to anyone else on this board in some time - not since you mentioned it a month or so ago anyway, so I'm really not sure what else you want me to do.

but thank you anyway. I do appreciate your time, and I really hope that YOU get your answers for Megs soon - you clearly deserve some.

Lucky, thanks as always. You're obviously a very nice person. YES! I am very lucky to be getting my own milk tested. I really wish I'd been able to get it done earlier as some of the work I've done with supplements and the kinesiologist earlier were designed to get my fructose-processing improved, and it may well have changed in the last few weeks - I will resume eating fructose-containing foods if it comes back clear but I will always wonder what was going on earlier, because I think some things have shifted with DD. not that it really matters.

I am waiting and she's doing ok for the mo. even with the diarrhoea she has still been well - bicarb a little low but otherwise normal.

Interestingly the reason why you can't temporarily wean at this age is a sucking thing more than a supply issue. they "forget" how to milk the breast within 2 weeks (lactation consultant tells me). Actually, with both my older DDs they tried to breastfeed about 2.5 weeks after they weaned and neither could do it. one bit me and couldn't do anything else, the other just put it in her mouth and looked confused! kind of funny at the time - nothing I can risk with DD (there's about 10 nutrients she's not getting anywhere else).

thanks anyway, we'll see what develops over the next week with poos and lab tests!

[charlie]

Tammy ;D
Lucky ;D ;D
Nicole

[lucky]

Nicoleh,

It is a personal choice to breast feed.
It is a personal choice when to wean.

No one can tell you when weaning is right for you or your child. But... at some point you will. Healthy child or not. Children grow up.

Yes, breast feeding provides a multitude of benefits, both in health and bonding (for both mother and child). But eventually, those are found differently as a child ages. Kids grow. Sometimes mothers are able to nurse. Sometimes not. Sometimes for long. Others not. It is what it is. And regardless of what milk is offered, the idea is to provide a fully nourishing milk so a baby can thrive. Breast milk or formula.

Formulas are fortified with nutrients/vitamins. Each company's product is uniform in it's ingredients. Obviously necessary for many reasons, but this consistency is also an advantage when a parent/doctor may need to scrutinize a child's diet. Your breast milk changes slightly day to day with diet (and who knows, perhaps with stress also?). It is variable. This is not.

In your case, it was a prudent measure to have your breast milk tested. You are lucky to have that option. I'm sure most don't. But as you mention, your added concern is that your diet/supplements at the time of your test may skew certain results. For fructose? I don't believe so as you were asked to load before testing. Regardless if other possible issues are found within your milk, if fructose can pass through, you will have answers. Little or a lot, they are just looking for different than the norm.

So, at least you will have answers for yourself -and perhaps only yourself- as damage to your liver earlier in life may be a reason for difference. Or...not...

I would wait for the results, and go from there.

But, if you find yourself w/o answers again, it may be wise to at least consider a short term formula test as an option if your child is not thriving. Discuss it with your doctor. My opinion is that if you are looking to provide a healthy source of nourishment for a chronically ill child -and not wholeheartedly finding it from breast milk- then you are going to have to re-evaluate at least one variable in your current thinking. Healthy is healthy regardless of what milk/diet you provide. Consistency in health is what you are striving for.

If you are willing to go the distance with all other testing, this is one that you may be in control of. It may give answers. And the goal is a healthy child, consistently. If breast milk provides a safe base nutritionally, great. But if there is an issue with your particular composition and it is not compatible with your daughter's needs, then she may not be getting what she needs to thrive for TODAY.

Even when there doesn't appear to be options, there always are.

Best case: The results come back and you find answers that are manageable and you can continue to offer breast milk with favorable, safe results.

Worst case: You find that your daughter has issues with some component, and breast feeding is no longer advisable.

Middle ground: You are left in limbo and should ask for suggestions from your doctor.

This is what I would consider if you are left in limbo:
You mentioned beforehand that you are not concerned with maintaining your milk production if you do a short term test to see if formula is well received. You are more concerned with a potential loss of your daughter's "latching technique" for nursing.

At the age of one, "nipple confusion" is not as it is when an infant is days/weeks/or month's old. Your daughter has been an experienced nurser for a year. Of course, never say never on anything, but you may want to consider that your previous children (when showing this type of anti-nursing behavior) may have also just simply been ready to end the nursing stage themselves. And by "rejecting" you, or more so the method of, they got what they wanted. They weaned -you- when you thought you might be weaning them to two methods of milk delivery (nursing or bottle/sippy cup). They were given a choice, and perhaps were ready (at that older age) for the alternative. It's easier, and more autonomous.

Sometimes, there are developmental factors involved (growing older and developing new interesting skills -dexterity, choice, control..) and not just one issue like nipple confusion. From the moment kids are given choices, they learn choices. In anything. Food, milk... and beyond.

Only you can say if your subtle issue is with 1.) the bonding aspect of nursing, or more so 2.) the nutrient aspect. If you keep up your breast milk production (through self expressing or pumping) WHILE trialing formula, you can always return to breast milk. Worst scenerio, maybe not through nursing, but definitely through expressing breast milk and offering it through bottle or sippy cup.

The breast milk is the same. Only the method of transport (through bottle or cup) is different. Yes, ideally, the best case is you continue nursing for as long as you wish, but this alternative is not a bad "worst" case. Same milk. Same nutrients. Same immunity benefit. Just different drinking method.

But, if it is more so the bonding aspect of nursing that you will miss, I understand that. But providing is providing. And if there is no going back (because of sucking confusion), then there is always the option, either expressed milk or formula. Sippy cup or bottle. Which ever is safer or more consistently favorable for your daughter's health.

Years ago, my son went from nursing (no expressing) to being very skilled with a sippy cup by 8mo (when I introduced formula: he drank that as milk till 15-16mo) and skipped bottles entirely. But I made sure he learned slowly and was very good at drinking from it before I stopped nursing him entirely. I never had an issue with nursing while he learned how to use a sippy cup (did not use a bottle). And IF he did, and I needed to put him back on breast milk for health/medical reasons (like in needing my immunity if he had a serious issue and was deficient in making himself...or other), I would have gone straight to the store (as long as I was still lactating to some degree) and bought a pump if he no longer was proficient at nursing.

As long as you are still lactating, you have options. Cup or bottle. Formula or breast milk. Safety first. Convenience, secondary.

I'm sure you'll have more direction when you get your tests back. Only you can decide with your doctor what you're comfortable with.

Hope something in here helps,
Lucky.

[flanagan]

I'm confirmed HFI, didn't have any problems when I was infant with breast milk. Hope that helps.

[lucky]

Just as a side note:

* How are DD3's full vitamin counts? (incl C,D etc)
* Are you taking supplements that may be causing issues?
* Is she taking baby liquid vitamin drops?
* Does she have FTT? (Failure to thrive) and underweight?
* Has anyone been tested for FM?
* Have stool tests shown anything for DD3? (acidity or other irregularity)

General testing usually focuses on: what goes in / what comes out (both urine/stool) / and blood. Everything ok? Or is it just food/breast milk investigation?

* Could your daughter's gut flora be compromised by the intestinal worms she had some time ago? Is it completely clear from her system now? And was it verified by lab testing? Were antibiotics used? Perhaps they may also have caused imbalance/sensitivity?

* How is the issue with your daughter's diet being too rich in protein? Has it been corrected? Is it creating concern in blood work/digestion? Is it perhaps a factor in your daughter's diarrhea or food sensitivity?

* If casein was/is a problem for your other daughter, could this be an irritant for this one in your breast milk? Like with FM, where there is one in a family, there may be more...

Maybe there are other factors in addition to a fructose sensitivity...

[nicoleh]

hi Lucky,
thanks for the caring response.

I know exactly what you mean about the breastmilk, and of course expressing and cup feeding would be possible if she 'forgot' how to feed. I hadn't thought of that. Honestly, I confess that I am probably not the right person to express and feed for very long - I think I would be too lazy and disorganised, but of course if that was absolutely required I would try.

It's my lactation consultant who says it's a 2 week time-frame during which they forget. I don't think it's the same thing as nipple confusion with a newborn. My DD2 didn't want to wean but I was pregnant. even when she wanted to have a turn at it she couldn't. anyway.....

yes I would miss the bonding, but that's not my major concern really. it's that until DD is old enough to swallow capsules, there are a number of essential supplements that she can only get through my milk. Like MTHF - (we all have the MTHFR gene mutation (folate activation) so she must have MTHF daily) - you can't get it in any form suitable for fructose-sensitive young children (well I and the doctors have looked very hard) so at the moment she gets it through me. There's also P-5-P and methylB12 that she needs. possibly may be able to give by injection, but it would really be unfortunate if she couldn't just get them through my milk.

All of this would be irrelevant of course if she couldn't tolerate my milk. However since she went a whole month (June) without any illness of any kind, I know that she CAN tolerate the milk - if only I eat the right thing - so that's what I've been looking to find out.

A few months ago our kinesiologist told me that she didn't handle vegetable oils of any kind. I removed olive oil from her diet (the only one she had) and from mine, but I forgot to remove foods that are cooked in other oils from my diet. As I said above, I was still eating crisps. Having stopped doing that on Tuesday, DD didn't poo at all yesterday - I think fat maldigestion is a big area to look at for her because she had a pretty fatty meal last night and her stool was half fine, half liquid today (who knows what is what, it's hard to sort out, but the day without a stool was presumably a good one). If oils are the only thing I have to be careful of then that's fantastic and feeding wont' be a problem. And it may even be the fattiness of her diet that is a problem. All this I'll be experimenting with little by little. luckily I keep a complete food diary for her with stools and other symptoms noted so I can look for patterns.

answering your questions:

-at the moment, her vitamin counts are really good except D was low, but I've been supplementing myself a lot, and we repeat the test next week for both of us.
-the vitamin K sup may have been causing issues but now I'm not so sure. I'll re-try it soon. I thought the probiotic may have been a drama so I'd removed it without improvement. It's back in now - maybe that is a mistake, but it makes me feel better, digestively speaking. I'll trial it for now. the dietician is happy with everything I take.
-she only takes zinc drops and vit C. that's all the dietician wanted her on.
-No, not at all FTT. she gains 100g/week and is at the top of the growth charts. she's the healthiest looking sick baby in the world! (and developmentally she's level or ahead for her age).
-all other family members can eat a massive plate of fruit, on an empty stomach even, without any symptoms. so no, no one tested; no reason to. which I'm told is one argument against the idea that DD has FM.
-stool tests perfectly normal. including no worms left.

everything tested is NOW ok (wasn't before, on fructose) except bicarb is a little low. This may be a combination of loose stools, a finger-prick blood test (can falsely depress bicarb) and still a little too much protein.

-she's never had antibiotics (neither have I in the last 6 years). flora seems to be ok - as far as we can tell...

-the protein is still a little high, probably a bit higher the last couple weeks as I've been a bit lazy with making her fish cakes. I should rectify that. It has generally been better though since she started on tapioca starch. really keen to see her with normal poos so I can re-try rice, or try noodles and of course dairy will help with that too, if tolerated. the high protein doesn't seem to contribute to diarrhoea because her protein was higher in the past even when she had some good weeks.

-yes casein may be an issue in the milk. if we still have problems after this oil removal I will try removing that.

There are definitely other factors as well as fructose going on, yes. And then I find out this morning that a certain sister has left a bowl full of nuts under her bed yesterday arvo - right where DD can get them. Who knows if she ate any, and what effect that had, sigh!

If the lab tests and fat removal don't show anything, I will try eating exactly the same things as DD for a few days and see where that gets us. trial and error, error and trial. At least she is well, her only symptom diarrhoea - I can afford to take some time to try different approaches. I might go a day or two without breastmilk too if I can convince her.

Thanks a lot.

[lucky]

Nicoleh,

Brilliant. Thanks. Very informative.

Vitamin D:
You may want to confirm with your specialist about daily dosage for yourself. I know you are in Australia, but here in Canada, daily recommended amounts have changed. It may make a difference in keeping yours and your daughter's D reserves up. Interestingly, I just learned that D can dip in a child when they grow. You just want to take care that iron etc is not later affected if it's not at an optimal level.

(You can message me for the new amounts, and discuss it with your specialist if it differs to your country's recommended amount.)

Infants in Canada get vitamin drops at different stages of development/age (D vi-sol, Tri vi-sol, Poly vi-sol) -even if breastfed- unless things have changed since my son was young. It's been ages, but I think these type of drops may still be fructose free. It may be a worth looking into it's components to see if so, or if there are safe equivalents in Australia. These may be useful when your daughter eventually weans (or earlier if needed).

My son is older now, but uses a vitamin D drop product called "D Drops". It is brilliantly easy and no taste. Has nothing to do with a balanced HFI (or regular) diet or not, it's just climate and lack of D from the sun. We all take it. Apparently, if tested, most Canadians are drastically lacking in D (especially during winter months as a body's storage can run low from what was stored during summer months). So it is good to be vigilant.

And if D gets low, it can drag down iron. And iron relies on vitamin C in the system for absorption. So everything is connected, and although a balanced body tends to stay balanced, one that is not yet (long term) needs to be monitored to avoid one issue becoming another, and another... in a domino type reaction.

My son only gets vitamin C and D:
But all his vitamins counts are monitored 1-2x per year as a precaution to monitor if he stays stable -especially during growth- as childrens' rapidly growing bodies and developing immune systems require much energy and may show strain (with new diet restriction, or past health issues, or healing from years of fructose mismanagement). Everything from vitamins (incl C, D, B12, calcium +++ etc), liver panel tests, glucose, electrolytes... and probably a few others I can't remember now. I know that his lab requisition form is lit up with check marks for all kinds of things. So he is still watched for stability, so that's reassuring. At 11yrs old our son is doing great. Everything is staying balanced for the last almost 3yrs solid. Longest healthy period of his life.

But D is tricky, although our son generally feels well (and not pale or tired often) he is still not high enough in his D. Luckily he has not tipped into anemia, and we're told his hemoglobin is still ok. So issues like this are not always very obvious. Especially when you were once used to a very sick child, and that is your baseline for assessing things. Anything looks healthy compared to those days.

Anyhow, we're working on increasing his D (again) and keeping it in an optimally healthy range, consistently. Tricky thing that D...

Vitamin C:
Make sure you are also getting enough too now that you're eating HFI safe, as the body can't store it so it must be added daily. But make sure that it isn't an irritating factor for your daughter. Is yours a safe source and void of fructose? If not, that may cause irritation for your daughter.

B12:
Watch out for that sneaky one. It is often overlooked, and may have serious consequences if low. It drops if one does not have enough meat (which I think you're ok with) in their diet. I know the HFI diet heavily relies on meat, but I've also noticed lots of noodles, HFI safe cheese style pizzas, crackers, potato chips etc. mentioned by some as staples. So there needs to be care, especially with the young. B12 makes new red blood cells. Everything relies on red blood cells for transport -from oxygen to all nutrients etc. For those that are unfamiliar with it's significance, have a quick google search. Very eye opening.

But to all:
Never add suppliments to your (or child's) diet unless recommended by your physician. It is important to do a full vitamin blood test in order in assess a person's need -if any- first. Just as it is not good to be deficient, it is also not to be "over". And truthfully, if I could find a safe child's multi vitamin, life would be more convenient. But till then, or till our son can have adult vitamins, we monitor and give what is needed. Thankfully, so far only C and D have ever been needed (since genetic investigation first started 4yrs ago).

In response to your last post:
* Your daughter's weight/growth/development: Wonderful
* Bicarbonate: Makes sense
* No antibiotics / flora healthy: Confirmed ok? Impressive!
* Others tested: Didn't your mom have the HFI DNA test?
* Casein: Good to keep in mind if still needs exclusion
* Fat absorption: Should ask if there is a link or just due to raw system
* Oils: We were told fried foods (oils) badly irritates a raw stomach, and to avoid till health stabilized long term. However, I'm not sure how it affects breast milk.
* Protein: If still too high have you tried white potato (mashed with your milk) as a carb? or fresh HFI safe bread maybe dipped in your milk if butter is out for now? (in a very little amounts to test). We were told at one point our son's carbs may have gotten too low (when he was very ill). Try to up it more if it is recommended. You don't want to go into a dangerous health slide.

* Trialing formula: If you need to trial it, I'm cautiously optimistic that you can get some type of results (even if minimal) far within the 2wk time frame you are concerned with. You may just be looking for little clues of input/output, satisfaction and food tolerance. But try and keep in mind formula does not have the same laxative properties as breast milk, so watch out for constipation, you will need to wean slowly. Ask your doctor first as to how to approach it safely and methodically within your ideal 2wk time frame. Or, if it is even possible. If you just go straight to formula (even for a few days only) you may shock your daughter's delicate system with constipation. So I would just confirm safe parameters in testing as a precaution, first.

Odd question:
* Is your daughter by chance teething? If so, that may be a connection to the odd diarrhea cycle and your difficulty tracking it.

[lucky]

Nicoleh,
I just re-read your post.
Your daughter is taking vitamin zinc drops and C drops?
Are those confirmed to be fructose free? If not, that could easily be an issue.