Breast fed or bottle fed from day 1?

[ukbill]

I am helping Metabolic Support UK with their description page for Fructosemia / HFI

They had missed out completely any reference to how to identify a potentially Fructosemic baby when bottle fed.

So I am wondering, do any babies survive who were bottle fed from day one? I have a strong suspicion most babies bottle fed from birth die as a "failure to thrive".

Can known Fructosemic / HFI people please reply to this and let me know. If you do not want to post a public comment, please message me so I can add you to the anonymised statistics.

I am putting this on all Facebook HFI/ Fructosemia pages as I can find as well as Proboards, to get as many people involved as possible. Please only answer once to keep stats clean and accurate.

Thanking you in advance.

Keep smiling

Starting this off.. :-

I was breast fed

[gerri]

Came home as a preeme - jaundiced - I was bottle fed - carnation milk with corn syrup - failure to thrive - then put on whole milk - rice cereal pablum. Within first year I had pneumonia - croup - ongoing ear problems(always had ear problems - always sick on holidays and weekends).

[Katie535]

Both me and my HFI brother were breastfed from day 1. We did not have growth issues. We refused fruit/fructose containing foods when they were introduced, and thankfully sugar was not added to everything back then the way that it is now. We ate rice cereal, and then lots of white foods, dairy, and meat . Interestingly though, my daughter had failure to thrive and lots of digestive issues. I nursed her for several years for many reasons, including digestive difficulties/discomfort with many foods. My son had no issues. She is not HFI, but she is sensitive to sugar and steers clear of most fructose containing foods. I chalk it up to raising her in a low fructose household because I could not eat it, although I did cook veggies for them often. My son ate them, but Lily has not cared for them much. I’ve read about carriers possibly exhibiting mild symptoms? I didn’t know I had HFI when my kids were little....

[rysmom14]

Hi Bill,

My son was 5 weeks early ( but was a twin birth so that was expected) and was a mix of breast and bottle for a month or two then was just bottle after that. at 4 months is when we was hospitalized with major HFI complications although he wasn't diagnosed during that hospital stay. at 5 months he was switched to a new formula that I am 100% sure saved his life. it had no sugar in it. if he went back on the formula he was eating before being in the hospital, I know he would not have made it to his first birthday

thanks for helping collect information as I am sure there are many babies that are not so lucky

[ukbill]

This is just the start of what I am planning I will let people know when I can what I am planning on doing and setting up
1st we need to get the 7 yes 7 names our condition is known as sorted out to one name..
HFI is really hurting us severely an Intolerance is usually just an upset tummy and there are 1000's of fake "intolerances" thought up every day by "alternative health 'Professionals' " (really Quack Dr's) to get people to part with their hard earned cash.

So trying to get the main name the condition is referred to as Fructosemia. This name far better describes the condition and gets Genuine medical professionals on the ball a lot quicker.

[jenn123]

My child was breast fed and was failure to thrive, most severe after Foods were introduced. She had some sugar given to her in nicu, and was there with jaundice and off numbers of unknown origin. They treated her with antibiotics at birth. She refused any and all formulas and most foods until nearly five years old. She is currently doing very well as well as an accomplished athlete with 20+ hr per week workouts. Her kidney doc said that all those years of breast feeding and her not being compromised is reflected in her current good health. It also made it very tough to diagnose as her number were normal or slightly off. And of course, i was one exhausted mommy.

[rysmom14]

Hi Bill,

since you are looking for more info on bottle fed babies I thought I would add this as well even though I already commented above.

Some of the things that stand out looking back that could be "symptoms". I know personality makes behavior different, but since I have the twins ( 1 with HFI and one without- not identical) I could do a good bit of comparison when my son was sick and undiagnosed and even now I can compare as both healthy 4.5 year olds.

potential symptoms:
lethargy- Ryan was very relaxed- people thought he was the best kid because he never fussed, he was the ultimate baby blob where as his twin was always trying to move on to the next milestone, he was content just laying there.
failure to thrive- Ryan was very low on all the charts, even more than expected for twins. he his sister grew pretty steady and he just hovered way at the bottom. he was way behind on all milestones even when he was getting physical therapy on a regular basis. he didn't start to catch up until he was diagnosed and had a good couple months of good eating under his belt.
Distended abdomen- this happened around 2 months and then was out of control right before he went into the hospital. it looked like he swallowed a basket ball.
Brittle hair an nails- Ryan's hair took forever to grow and grew in odd. until be was on track with his diet and now its normal. his nails never grew. I mentioned that every time I cut his twins nails, I would try to cut his, but they never grew. The doctors thought it was such a strange observation and one I could have only known because of having twins.
throwing up- he threw up constantly after he ate. of course he was eating sugar filled with sugar so that makes so much sense. many times Dr's don't look into throwing up because they say its acid reflux or something else, but he would projectile throw up, not just spit up.
spitting out unsafe foods- after we were home from the hospital and started solid food around 6 months, he would spit out every fruit I gave him, except strawberries ( which I am understanding is lower in sugar content then other fruits), and most veggies. he loved green been baby food.

Acid like poop- my son would have terrible poop.  very acid like.  it looked like it burned.  he was the worst "diaper rash" every and nothing fixed it.  his butt would bleed because the skin was so broken down.


every case and every child is different, but maybe seeing some of these symptoms will help. I know it would go along way to have the pediatricians understand HFI better

[tummyache]

I was a bottle fed baby in 1942; a very sick, low weight baby; episodic sickness and continued under weight until the 1970's when I was finally diagnosed and my diet was significantly changed and mega-doses of vitamins + minerals added.

[Stefanie (Ziba)]

My son was seven weeks early and severely growth restricted. He was in the NICU two months, given sugar by the nurses but I pumped 8 times a day and was given 100% breastmilk for the first 6 months. After that, he was on a formula that had fructose (brown rice syrup) for a while (in retrospect, symptoms worsened) but then we switched to one with no fructose. He vomited regularly and was failure to thrive for the first 18 months until we went fructose-free, and it was most severe after table foods were introduced. He is four years old now and doing very well with a fructose-free diet (and carnitine supplementation), but he still does not like eating. Every day he says "Food does not make me happy" and it just breaks my heart. He has had genetic testing and it has not revealed the cause for his symptoms which match/ mimic HFI.

[hfimomof3]

I was breastfed, mom tried to wean me to formula (this was over 40 years ago so I don't know what was in the formula). I would throw up a lot. She continued breastfeeding me until I was about 2 while also attempting to introduce solid foods. I failed to thrive during infancy: low weight gain, vomiting, lethargic. Eventually I rejected sweet foods on my own and began gaining weight. I don't know the timeline for a lot of this, except that she tried to wean my siblings to formula at about 6 weeks (so presumably that is when she tried to start weaning me) and had to breastfeed me for a couple years because of my problems.

[Stefanie (Ziba)]

I am surprised Ryan was so relaxed. Remy was the opposite...never content, always hyperactive and restless...until we figured out what was going on.

Like Ryan, Remy was very low on all the charts and had to receive therapies in the NICU and continued with feeding therapy afterward. Remy also had a "pot belly" and he had very thin hair that grew in very strange (only in front/top and not on sides) and he did not have any teeth until 13 months old.
Remy also threw up (projectile) constantly after he ate. Docs also blamed acid reflux for all GI symptoms.
When we started solid food around 6 months, he did not like any fruits except avocado and only liked green beans of the few veggies he would try.
His poops were awful-- copious, frequent, foul, acidic, and mucousy. They were watery and his diaper rash was terrible. The skin would sometimes be raw and peel and bleed as well. Once we got him fructose-free (and remember the fructose came from the sweet-ease in the NICU and then a few months later from solids), his symptoms went away over a very short period of time.

[ukbill]

Thanks everyone for these enlightening stories.
I have 2 appointments with Dr Cox in January one to help a mother with a 18 month old baby and also for me!

so hopefully 2019 will get off to a roaring start.

i sent a recent report on fructose making it past the barrier and into breast milk. He was scathing about the report.

Apparently it has not been peer reviewed or checked by other medical professionals and many other issues with it.

He admits it is possible if the mother is consuming massive amounts of fructose shortly before feeding but thinks in general highly unlikely.

Considering the "normal" diet of most people now is stupidly high in HFCS and other sugars I think personally he is possibly a little optimistic about the numbers of mothers eating too much sugar while breast feeding.

Personally I still think avoiding any sucrose of fructose for 30 min or so before a breast feed is not a bad idea.. just in case

Happy 2019 every one.

Question..
What do you get if you smile all day?
Answer
Smiled back to.
And those who want to make you unhappy get riled up by the apparent fact that they have failed

Keep smiling everyone