FPIES in toddlers? Breastfeeding on a TED?
April 29, 2019 1:11 PM Subscribe
My 17 month old son seems to have chronic FPIES to a number of foods. We are both on a restrictive total elimination diet because I’m still breastfeeding. Do you know anything about either of these things?
My son’s FPIES triggers include dairy, soy, sesame, sweet potatoes, green peas, grapes, and buckwheat, plus many more suspected ones. He’s only had chronic reactions so far, nothing acute. His reactions are extreme colicky stomach pain, loose and/or mucusy stools, constipation, feeding refusal, and sleep disturbance.
Our total elimination diet is about 10-15 foods total.
YANMD. Do you have personal experience to share about either FPIES or breastfeeding on a TED?
For FPIES, what were your/your child’s trigger foods and symptoms? When/how did it resolve?
For breastfeeding on a TED, how did you weigh your own nutritional needs against your child’s desire/need to nurse?
Any resources you can point me to? Any general advice or encouragement for a tired, hungry mom?
(PS First post ever on FPIES here? A dubious honor!)
My son’s FPIES triggers include dairy, soy, sesame, sweet potatoes, green peas, grapes, and buckwheat, plus many more suspected ones. He’s only had chronic reactions so far, nothing acute. His reactions are extreme colicky stomach pain, loose and/or mucusy stools, constipation, feeding refusal, and sleep disturbance.
Our total elimination diet is about 10-15 foods total.
YANMD. Do you have personal experience to share about either FPIES or breastfeeding on a TED?
For FPIES, what were your/your child’s trigger foods and symptoms? When/how did it resolve?
For breastfeeding on a TED, how did you weigh your own nutritional needs against your child’s desire/need to nurse?
Any resources you can point me to? Any general advice or encouragement for a tired, hungry mom?
(PS First post ever on FPIES here? A dubious honor!)
Poor you! This must be a rough time for you.
I haven't gone through your exact predicament, but my second baby had some other food issues, and the nurse almost forced me to reduce/stop breastfeeding at 9 months because I was so washed out. I didn't stop entirely when she said it, but eventually my baby enjoyed eating other stuff more, and slept much better, so at about 11 months she stopped breastfeeding entirely and our lives became a lot easier. She had a very limited diet until she was about 2 years old, but then she started eating normally, and there were no health consequences of that year of weird food habits.
You are way beyond breastfeeding standard recommendations, and I hope you are proud of that achievement! You've done good work for your baby. But it's also OK to let it go, so you can eat what you need, and baby can eat what he needs.
My baby couldn't eat fresh dairy either, but she could eat cultured butter, so she had a lot of mashed potato and broccoli with butter in it. Protein and fat from the butter, vitamins from the broccoli and filling from the potatoes.
If cow-milk butter is impossible, maybe try goat-milk? Both my babies liked goat products, and many kids with dairy issues can eat them. Lipids are really important for neural development, and when my eldest was weaned off breastmilk, she turned to olive paste! I know, it's weird, but she enjoyed it on wheat crisp-bread.
While both my babies had problems with digesting diary, they've grown to be healthy omnivores, I hope you are as lucky.
posted by mumimor at 1:36 PM on April 29, 2019 [1 favorite]
I haven't gone through your exact predicament, but my second baby had some other food issues, and the nurse almost forced me to reduce/stop breastfeeding at 9 months because I was so washed out. I didn't stop entirely when she said it, but eventually my baby enjoyed eating other stuff more, and slept much better, so at about 11 months she stopped breastfeeding entirely and our lives became a lot easier. She had a very limited diet until she was about 2 years old, but then she started eating normally, and there were no health consequences of that year of weird food habits.
You are way beyond breastfeeding standard recommendations, and I hope you are proud of that achievement! You've done good work for your baby. But it's also OK to let it go, so you can eat what you need, and baby can eat what he needs.
My baby couldn't eat fresh dairy either, but she could eat cultured butter, so she had a lot of mashed potato and broccoli with butter in it. Protein and fat from the butter, vitamins from the broccoli and filling from the potatoes.
If cow-milk butter is impossible, maybe try goat-milk? Both my babies liked goat products, and many kids with dairy issues can eat them. Lipids are really important for neural development, and when my eldest was weaned off breastmilk, she turned to olive paste! I know, it's weird, but she enjoyed it on wheat crisp-bread.
While both my babies had problems with digesting diary, they've grown to be healthy omnivores, I hope you are as lucky.
posted by mumimor at 1:36 PM on April 29, 2019 [1 favorite]
My daughter did not have this but did react to dairy in my breastmilk. Just in case it's useful information for you, it took more than 24 hours to begin to have symptoms after I ate dairy, and her symptoms lasted for up to five days. Just telling you this in case it helps you narrow things down; the delayed response and long recovery from it made it take a long time for me to figure out the trigger.
(My son had all the symptoms of FPIES but we never figured out what set it off, if anything. He's 18 now and still has random stomach issues of no known cause. I hope you have better luck.)
posted by metasarah at 2:23 PM on April 29, 2019
(My son had all the symptoms of FPIES but we never figured out what set it off, if anything. He's 18 now and still has random stomach issues of no known cause. I hope you have better luck.)
posted by metasarah at 2:23 PM on April 29, 2019
I was on a TED when my kiddo was about a year old. I had turkey or chicken, millet, ghee, green beans and summer squash as all I could eat for a couple of weeks. It was rough, but it was easier than the kiddo screaming every time he peed. I lost over 20 pounds (possibly 40 pounds, but it has been a few years).
The first food we re-introduced was peanut butter. Oh, man. Once that one was cleared, I ate almost a whole jar of peanut butter a day for the next week.
We brought our own food to family gatherings. (Oh boy! millet and turkey again! yay)
We figured out it was the blueberries we put in his oatmeal and all the tomato sauces I was eating. It was a relief to finally have it pinned down. At age 5, he can eat them again! At the time, I hated the "they'll probably grow out of the allergy after 5 years old" advice. But in our case, it was true.
posted by jillithd at 2:31 PM on April 29, 2019 [3 favorites]
The first food we re-introduced was peanut butter. Oh, man. Once that one was cleared, I ate almost a whole jar of peanut butter a day for the next week.
We brought our own food to family gatherings. (Oh boy! millet and turkey again! yay)
We figured out it was the blueberries we put in his oatmeal and all the tomato sauces I was eating. It was a relief to finally have it pinned down. At age 5, he can eat them again! At the time, I hated the "they'll probably grow out of the allergy after 5 years old" advice. But in our case, it was true.
posted by jillithd at 2:31 PM on April 29, 2019 [3 favorites]
I enjoyed roasting a whole chicken myself regularly during that time. That kind of helped.
posted by jillithd at 2:32 PM on April 29, 2019 [1 favorite]
posted by jillithd at 2:32 PM on April 29, 2019 [1 favorite]
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https://community.babycenter.com/post/a34946548/ted_for_fpies
I hope it helps. I’m in Europe and maybe my searches turn up different things... otherwise sorry if you’ve already seen it.
If there were a magical formula that would solve this then I would feel no guilt in switching from breast.
posted by catspajammies at 1:35 PM on April 29, 2019