Hello, I am Heidi a NICU nurse in Lincoln, NE. I am also the mother of three children who have or have had MSPI. I wanted to share my MSPI experience, and also share an article I have written about MSPI
My MSPI Experience:
When my first daughter was a newborn, she was fussy. She would cry when she was laid down at only a day old. At first, I thought it was because my milk hadn't come in yet and she was so tiny and hungry. So, I nursed her and nursed her and nursed her.
Over the next couple days, my milk came in but my baby got fussier! By the time she was two weeks old, she was crying more than she did anything else. Almost nothing worked to soothe her. We tried taking her for car rides, carrying her in a baby carrier, singing, bouncing, walking the floors...nothing helped.
Finally, at three weeks old, it got to the point where she began crying while I was nursing her. She would nurse for a little bit, pop off and scream, nurse, scream. It was miserable. She was never happy, never! One night, after having pizza for dinner, she was worse than she ever had been. I sat there with tears running down my face trying repeatedly to nurse her to soothe her. It didn't work. She screamed until she wore herself out and fell asleep exhausted in my arms. The next day, I finally took her to the Doctor. After I explained my concerns (a bit sheepishly, for I was sure I would be told, "babies are fussy, it can't be THAT bad), the Doctor tested my baby's stool. It came back positive for blood and reducing substances. My pediatrician said this fit the clinical picture for Milk-soy protein intolerance. (MSPI) Because I am vegetarian, she said I could try just eliminating milk first and then soy as well if there was no improvement. I thanked her, but said I would cut both out immediately. I was desperate to see my daughter improve.
Two weeks later, we had a different baby. We finally saw some smiles! She still had reflux and had to sleep with her head up, but it was so much better! My diet was no fun, but I kept telling myself, "It's just food...it's just for a year or so of my life!"
My husband and I went on to have two more children. With my second child, I was able to nurse off milk and soy for six months, at which time I also cut out eggs and later wheat. However, she was intolerant to most grains, numerous fruits, and was only able to eat turkey and sunflower seed butter for protein. I weaned her abruptly from breast milk to Neocate at a year and was able to gradually transition her to potato milk (Vance's DariFree) and then later rice milk.
With my third MSPI child, I was off milk, soy, eggs, nuts, wheat, and corn by six weeks of age. However, I was able to gradually add in everything but milk and soy by ten months, soy by 11 months, dairy by right around a year. I am unsure why he was less mild, but wonder if it had to do with faithful administration of a priobiotic every day from early infancy. I am still breastfeeding Samuel, he is 18 months old and thirty pounds. He can eat anything, although I have not tried peanut butter yet. He drinks oat milk, nurses twice per day, and does fine so long as we do not feed him too much dairy.
Feeding the MSPI baby
Breast milk remains the best option for infant feeding. In addition to its traditionally known immune-protective and many other benefits, it also offers the mother the option of tailoring its composition to suit her baby. This is especially true in regards to babies who are intolerant to corn. To my knowledge, every infant formula contains corn syrup solids with the exception of Alimentum RTF (ready-to-feed). And, as Alimentum RTF contains broken-down milk proteins, this option may not be a viable one for the most intolerant infant.
Many mothers find it helpful to begin with eliminating milk and soy, and then moving on down the list of the top allergenic foods: egg, peanuts, tree nuts, fish, shellfish, wheat, corn. Interestingly, some babies who appear to tolerate almost nothing their mother eats may tolerate a rotation diet where the mother eats a very basic total elimination diet but then adds in something different low on the allergen scale every 3 days or so. This technique may also be a helpful option for babies who are highly intolerant of most foods they attempt to eat themselves.
For mothers who cannot or chose to not breast feed, there are several formula options for the MSPI infant. The first category is the formula options which contain a milk protein that is broken-down for easier digestion. This category includes Alimentum, Alimentum RTF, Nutramigen, and Pregestimil. The second category are the formula options that contain no intact milk proteins but are made up of individual amino acids. These include Neocate, Elecare, and Nutramigen AA (amino acid). These are tolerated well by most infants, but do contain corn syrup solids.
It is recommended that solids be delayed in MSPI babies until they are six months of age; and starting with mild fruits or vegetables at this time. Good options for first foods include sweet potato, pear, and winter squash. Each food should be trialed for at least 5-7 days prior to considering the food a "pass." The Jonega allergen scale can be a helpful guide for food introduction as well. It may be found here: http://www.allergynutrition.com/resources/FAQ/15/Foods%20Most%20Frequently%20Associated%20with%20Allergy.pdf
For babies with difficulty gaining weight, adding higher-fat foods such as avocado, sun butter, fatty meats, and healthy oils such as olive and canola to the diet may be helpful. Sweet potato fries, grains cooked with added oil or earth balance soy-free, coconut yogurt, and making "fudge" from exra-virgin coconut oil (solid at room temperature), agave nectar, and carob or cocoa powder are some high-calorie foods children enjoy.
What techniques have you found helpful to find success in adding new foods to your diet as a breastfeeding mother? Any great food ideas to help your lower-weight infant or toddler gain weight? What solids foods have you had success with in your highly intolerant infant?
My MSPI Experience:
When my first daughter was a newborn, she was fussy. She would cry when she was laid down at only a day old. At first, I thought it was because my milk hadn't come in yet and she was so tiny and hungry. So, I nursed her and nursed her and nursed her.
Over the next couple days, my milk came in but my baby got fussier! By the time she was two weeks old, she was crying more than she did anything else. Almost nothing worked to soothe her. We tried taking her for car rides, carrying her in a baby carrier, singing, bouncing, walking the floors...nothing helped.
Finally, at three weeks old, it got to the point where she began crying while I was nursing her. She would nurse for a little bit, pop off and scream, nurse, scream. It was miserable. She was never happy, never! One night, after having pizza for dinner, she was worse than she ever had been. I sat there with tears running down my face trying repeatedly to nurse her to soothe her. It didn't work. She screamed until she wore herself out and fell asleep exhausted in my arms. The next day, I finally took her to the Doctor. After I explained my concerns (a bit sheepishly, for I was sure I would be told, "babies are fussy, it can't be THAT bad), the Doctor tested my baby's stool. It came back positive for blood and reducing substances. My pediatrician said this fit the clinical picture for Milk-soy protein intolerance. (MSPI) Because I am vegetarian, she said I could try just eliminating milk first and then soy as well if there was no improvement. I thanked her, but said I would cut both out immediately. I was desperate to see my daughter improve.
Two weeks later, we had a different baby. We finally saw some smiles! She still had reflux and had to sleep with her head up, but it was so much better! My diet was no fun, but I kept telling myself, "It's just food...it's just for a year or so of my life!"
My husband and I went on to have two more children. With my second child, I was able to nurse off milk and soy for six months, at which time I also cut out eggs and later wheat. However, she was intolerant to most grains, numerous fruits, and was only able to eat turkey and sunflower seed butter for protein. I weaned her abruptly from breast milk to Neocate at a year and was able to gradually transition her to potato milk (Vance's DariFree) and then later rice milk.
With my third MSPI child, I was off milk, soy, eggs, nuts, wheat, and corn by six weeks of age. However, I was able to gradually add in everything but milk and soy by ten months, soy by 11 months, dairy by right around a year. I am unsure why he was less mild, but wonder if it had to do with faithful administration of a priobiotic every day from early infancy. I am still breastfeeding Samuel, he is 18 months old and thirty pounds. He can eat anything, although I have not tried peanut butter yet. He drinks oat milk, nurses twice per day, and does fine so long as we do not feed him too much dairy.
Feeding the MSPI baby
Breast milk remains the best option for infant feeding. In addition to its traditionally known immune-protective and many other benefits, it also offers the mother the option of tailoring its composition to suit her baby. This is especially true in regards to babies who are intolerant to corn. To my knowledge, every infant formula contains corn syrup solids with the exception of Alimentum RTF (ready-to-feed). And, as Alimentum RTF contains broken-down milk proteins, this option may not be a viable one for the most intolerant infant.
Many mothers find it helpful to begin with eliminating milk and soy, and then moving on down the list of the top allergenic foods: egg, peanuts, tree nuts, fish, shellfish, wheat, corn. Interestingly, some babies who appear to tolerate almost nothing their mother eats may tolerate a rotation diet where the mother eats a very basic total elimination diet but then adds in something different low on the allergen scale every 3 days or so. This technique may also be a helpful option for babies who are highly intolerant of most foods they attempt to eat themselves.
For mothers who cannot or chose to not breast feed, there are several formula options for the MSPI infant. The first category is the formula options which contain a milk protein that is broken-down for easier digestion. This category includes Alimentum, Alimentum RTF, Nutramigen, and Pregestimil. The second category are the formula options that contain no intact milk proteins but are made up of individual amino acids. These include Neocate, Elecare, and Nutramigen AA (amino acid). These are tolerated well by most infants, but do contain corn syrup solids.
It is recommended that solids be delayed in MSPI babies until they are six months of age; and starting with mild fruits or vegetables at this time. Good options for first foods include sweet potato, pear, and winter squash. Each food should be trialed for at least 5-7 days prior to considering the food a "pass." The Jonega allergen scale can be a helpful guide for food introduction as well. It may be found here: http://www.allergynutrition.com/resources/FAQ/15/Foods%20Most%20Frequently%20Associated%20with%20Allergy.pdf
For babies with difficulty gaining weight, adding higher-fat foods such as avocado, sun butter, fatty meats, and healthy oils such as olive and canola to the diet may be helpful. Sweet potato fries, grains cooked with added oil or earth balance soy-free, coconut yogurt, and making "fudge" from exra-virgin coconut oil (solid at room temperature), agave nectar, and carob or cocoa powder are some high-calorie foods children enjoy.
What techniques have you found helpful to find success in adding new foods to your diet as a breastfeeding mother? Any great food ideas to help your lower-weight infant or toddler gain weight? What solids foods have you had success with in your highly intolerant infant?
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