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Post by jenn123 on Jul 11, 2016 14:48:56 GMT -5
Hi,
We are new to this diagnosis and appreciate everyone's knowledge and experiences. Extremely helpful !
We have tried milk for source of calcium. Our daughter loves it, but it doesn't love her. Wondering if anyone has had any luck with almond milks? If so, which brands ? If I make it myself would it have enough calcium in it or do I need to supplement? What are some sources of calcium have people had luck with ?
Thank you !
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Post by colormist on Jul 12, 2016 8:16:13 GMT -5
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Post by rysmom14 on Jul 12, 2016 10:38:17 GMT -5
Ross/Abbott Carb free formula was mentioned in a similar post a while back, and also goats milk. not sure of these would be an option or even something you would ant to look into.
the lactaid would be a good option if it's a digestive issue. I know I personally had it in the past ( I do not have HFI) and it tasted fine.
Good Luck!
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Post by jenn123 on Jul 12, 2016 12:32:51 GMT -5
Thank you for your responses. This is definitely the place to come for experienced feedback. Nuts were listed on the safe list we received from dietician. 😤 Are there any nuts that are able to be tolerated ?
I will check out the formula, thank you. Lactaid actually does taste good and she loves it, but it sends her into hysterical crying sessions. I have been thinking that it was related to how she processes sugars ? The crying only happens with lactaid, regular milk causes GI problems and overall gives her a terrible smell. This smell related to any dairy consumption only began after she started HFI diet. It's strange.
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Post by colormist on Jul 12, 2016 13:39:55 GMT -5
Tolerated means that the food still has bad sugars in it and will cause medical issues--just not as severely as other foods. Given that you're dealing with a younger child, you will want to avoid all nuts entirely as they all have fructose in them.
And yes, I have yet to hear of a dietitian list that was accurate.
Is she drinking the lactaid without any other foods? That might cause her blood sugar to crash--particularly if she's still eating foods with fructose in them. Was she like this with breast milk/formula?
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Post by jenn123 on Jul 12, 2016 13:55:05 GMT -5
Okay, no more nuts ! So frustrating that so much information is not correct.
She was great on breast milk, wish I had an endless supply and that she could drink it out a glass. 😊
Honestly, the response to lactaid is so dramatic that i allow her to have it every few months to see if it is still there. So I have not done any tracking of other foods in combination. Maybe in a few months of HFI diet (once we are completely in it 😤), things will have settled down and she would react differently. Will post of there are any improvements next time I try it.
Overall, we started diet six weeks ago and already drastic improvements.
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Post by rysmom14 on Jul 12, 2016 14:59:07 GMT -5
I hear you on the breast milk! That stuff is like gold. and it's really the best thing for HFI babies since the sugars dont pass through to the baby. My son was diagnosed at 5 months and I was not able to breast feed at all (sigh) so I gave him formula. The regular similac formula was so sugar packed I couldnt believe it! The formula he was given in the hospital was made by Enfamil and is called Progestimil. It has shorter carbohydrate chains and is supposed to be easier to digest. He was given that because he was a liver patient when he was an inpatient. it happened to also have no sugar in it so it was a win-win and truly saved his life. It is super expensive, but it dint have the sugar in it. I was lucky to have insurance cover it because he was hospitalized for the HFI issues.
How old is your daughter? I have a good bit of the Progestimil that is just sitting in my cupboard that I was going to donate to a womens shelter. If she is still of age and it's something you want, I would be happy to give it to you.
They also sell it at Walmart, but only by the case.
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Post by rysmom14 on Jul 12, 2016 15:01:54 GMT -5
I just had another thought.... If your daughter has a confirmed diagnosis, maybe her insurance would cover the formula...
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Post by colormist on Jul 13, 2016 7:40:06 GMT -5
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Post by jenn123 on Jul 13, 2016 10:05:15 GMT -5
Thank you.
I will pick up a single can of formula to supplement for when I have a hard time getting vitamins to her. I got the Nano VM, but her consuming the full amount has been difficult. She is older (9) so she doesn't need formula as a main stay. I was thinking just like an Ensure, her friend is tiny and always drinks Ensure so she may think it is fun.
I will also pick up some rice milk. I have not looked at them for years so had forgotten about the option. If she won't drink a glass of it, at least I will know it is safe can use in cooking.
Thank you - after trying to figure out what was going on and what was safe by trial and error by myself for years, so nice to have a community with similar experiences. Appreciative.
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Post by tummyache on Jul 13, 2016 18:58:11 GMT -5
I prefer Silk brand Unsweetened Almond Milk as it has the fewest ingredients. Probably making your own from scratch would be better yet; but I am lazy and store bought is easier. I like the the small boxes to have on hand as well as the large ones, as I don't always need a lot a one time. I can't use the Lactase Pills -- not sure it is just because all the brand I have found have sugar in them or it's that I must be sensitive to more than just the lactose in milk. So I have to avoid dairy all together.
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Post by jenn123 on Jul 19, 2016 21:55:52 GMT -5
Thank you. I am hoping that her reaction to dairy will change after a few months on HFI diet. The doctor thought it might, but we will see.
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