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Infant Formula Questions?

Guest AutumnE

By Guest AutumnE
in Parents, Friends and Loved Ones of Celiacs

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Guest AutumnE
Guest AutumnE
Posted

My nephew has seizures, they greatly reduced when he went gluten free but not completely. EEG came back normal all three times and the mri. But obviously he is still having them. My sister has linked them to food which is why we believe the reason he had them is because he had to fast and be put to sleep for the tests. He gets a seizure within a half hour of food. I found an article on line regarding controlling seizures and how it was recommended to try a gluten free (which he is already on), dairy free, soy free, corn free diet. He was on similac soy and sure enough it has corn in it. I found alimentum doesnt have corn but I saw casein on there.

I think she is going to try it and see if its just the corn and gluten.

Does anyone know of a formula that is corn, gluten, soy, and dairy free or since he is nine months old should she just use the alimentum till he is 1? I am hopeful as well as her to get them stopped. It scares me since he is just a beginning walker and Im afraid he will have a seizure and fall into some furniture or worse.

thanks for any responses

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bonnieboo Apprentice
bonnieboo
Posted

In alimentum, the cassein is hydrolyzed so their little systems don't have to break it down. It's for babies who are cow's milk protein intolerant (like mine).

I just looked around for a formula that is everything free, and I can't find one. Sorry! We've done very well on alimentum, but next time (if we are so blessed) I'm gonna do whatever it takes to breastfeed for two years. I had no understanding of the world of food intolerances until my supply tanked and I was left with a baby who was in pain and miserable whenever she had a drop of standard formula!

(hugs) to your nephew...and the those of you going through this struggle with him.

Mountain Mama Rookie
Mountain Mama
Posted

[Hi, my youngest dd had seizures also and reflux. She had to be on alimentum until she was almost 2 years old. It smells really bad, but she would drink it and not scream in pain and projectile vomit across the room. The seizures stopped after she had been on it for awhile, she was also on phenobarbitol at the same time.

ptkds Community Regular
ptkds
Posted

I just wanted to point out the the powder Alimentum does have corn, but the ready-to-feed doesn't. Most ppl don't realize this. I didn't until a nutritionist pointed me out to me when my dd was still having problems on the powder. We only give her the RTF, and she does much better.

I hope he gets better soon!

ptkds

Guest AutumnE
Guest AutumnE
Posted

Thanks so much I'll share it with my sister :) I hope he gets better soon too, she had problems with jaundice with him being too tired when he was born and she would breastfeed him all of the time but could not get him to stay awake regardless of what she did. He literally slept constantly and he dehydrated in a period of 36 hours and was back in the hospital so she put him on formula and reflux started; being her second child in a bit over a year she was overwhelmed and figured he would be fine on formula since her daughter was and he hasnt done well at all.

He isnt on medicine for the epilepsy yet, they said since they arent grand mals and did not pick up on the eeg to just wait and see. He has two kinds one where he will stare for a few minutes and the other one the upper half of his body shakes. His body shaking scares him and he usually cries but he doesnt lose consciousness.

Im going to print this out. Im having a hard time convincing my bil and sister that he could have intolerances to these foods. My bil is in denial even after the enterolab testing on his son, daughter, and my sister who all have the celiac gene. He is giving my sister a hard time about it and unfortunately my sister is easily swayed but at least they are gluten free.

Im the stubborn one in my family and always researched everything on my own and have never trusted dr's too much. My mom, dad, and me are ready to sit them down and talk about kyle and his seizures. We all feel they need to keep on trying and keeping him off these foods. But I dont know how its going to go over. I'm sick over this because I have had seizures for almost 18 years and meds never solved it but when I went gluten free and my other intolerances and they stopped. I dont want him to go through what I did growing up.

Wish me luck!

cs789 Rookie
cs789
Posted

I have heard from a Nutrition doctor to use goat’s milk as an option. You may just want to research it. I think the nutritionist was Dr. Ted Broer. I think you can research his literature online.

ptkds Community Regular
ptkds
Posted

One dr told me that goats milk has the same milk protein that is found in cows milk and soy. That protein is what my dd has a problem with, so she would not have been able to handle goats milk. There is another formula called Neocate. It is REALLY hard to find and pretty pricey. But a pharmacy should be able to get it for you. And insurance may even pay for it, unless you have WIC. Then they would cover it and order it for you (at least here in Tx). That would have been the next step for us. We are on WIC, so when I talked to the nutritionist at the WIC office, she said that they would get it for me if I had an rx from the dr.

So if Alimentum doesnt' work, they should try Neocate.

Good luck,

ptkds

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Guest AutumnE
Guest AutumnE
Posted

I'll have to do some research on the goat milk. Regarding the neocate, they wouldnt qualify for wic and I cant imagine their pediatrician giving them a prescription for it since he said enterolab was junk science and the allergist who she went to that confirmed enterolab's studies and testing was called a quack by him.

This is not the first incident either since when I suspected my niece had a bladder infection (strong urine smell, bright colored) he almost refused a test since "She doesnt have a bladder infection because she is not vomiting" :angry::rolleyes:

Vomiting is not a common sign of a bladder infection only of a kidney infection when it has spread all the way up! He did run the culture and to his surprise she did have a bladder infection and was put on medication, no apology given to them. I have been waiting for her to dump this pediatrician and she still sees him :rolleyes:

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