Anyone have experience with this? We literally have run out of things to give my DS, and recently discovered (through a feeding clinic eval) that he has terrible oral motor tone and can't move his tongue laterally. At all. (Good thing we got his tongue tie fixed last month, now at least he can learn to move it!) He has many issues, and our immunologist and allergist are sending us for a genetics consult to see if there is an overarching chromosomal or metabolic disorder at work here. (They are continuing immune testing at my insistence, since all of his results indicated a permanent immune deficiency- if left to their own devices, they would have me wait til he's 3 years old to see if he grows out of it.)
Anyway, he is allergic to eggs (his one IgE allergy), dairy, and corn. He had acid poop (complete with blistering) on elemental formula, and started getting it again on Alimentum and on his cow's milk trial. So we let him have rice milk and his safe purees (sweet potato, pear, avocado, etc.) for 2 days, and his diarrhea STOPPED. The feeding clinic team agreed we shouldn't go back to the Alimentum, and are looking into sourcing amino acid powder so we can make a custom formula.
In the meantime, they suggested we try this Toddler Health rice based toddler formula- we picked some up last week. The good thing about it is that he is tolerating it digestively- his poops are so beautiful I could frame them! The bad thing is that he's now losing weight. We currently have it mixed to around 24 cal/oz, and he's only taking 23-24 oz of it per day (he was at 30 oz/day of alimentum). We've tried sweetening it, but it doesn't really help. We are doing food trials for other protein sources, but right now we can't do anything potentially dangerous (like soy) because my car is in the shop all week and we live in a really remote area. I do have an epi-pen here, but I want to be able to take him to the doctor if something goes badly. I tried garbanzo bean and safflower oil puree today, but he hated it.
He cannot chew at all, so anything he's to derive nutrition from has to be pureed at this point (he will start OT for feeding issues as soon as we get my car back). My guess is that the osmolality of this toddler health stuff is just too high for him (someone else posted that they had this issue with concentrated elecare in one of my other threads). One of our three nutritionists has suggested I add some oil to the formula to boost the calories. I have calls in to the other 2, but I figured this was a better source for BTDT advice.
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FTR, he lost about 10 or 12 ounces (varies by scale) in 8 or 9 days.
Sorry to ramble- I'd love to hear any thoughts you mamas have (on this particular formula or anything else in my post).
Oh, another thing- his thrush and mottled tongue have disappeared for the first time since he got a bottle of supplemental formula at 6 months.
Anyway, he is allergic to eggs (his one IgE allergy), dairy, and corn. He had acid poop (complete with blistering) on elemental formula, and started getting it again on Alimentum and on his cow's milk trial. So we let him have rice milk and his safe purees (sweet potato, pear, avocado, etc.) for 2 days, and his diarrhea STOPPED. The feeding clinic team agreed we shouldn't go back to the Alimentum, and are looking into sourcing amino acid powder so we can make a custom formula.
In the meantime, they suggested we try this Toddler Health rice based toddler formula- we picked some up last week. The good thing about it is that he is tolerating it digestively- his poops are so beautiful I could frame them! The bad thing is that he's now losing weight. We currently have it mixed to around 24 cal/oz, and he's only taking 23-24 oz of it per day (he was at 30 oz/day of alimentum). We've tried sweetening it, but it doesn't really help. We are doing food trials for other protein sources, but right now we can't do anything potentially dangerous (like soy) because my car is in the shop all week and we live in a really remote area. I do have an epi-pen here, but I want to be able to take him to the doctor if something goes badly. I tried garbanzo bean and safflower oil puree today, but he hated it.
He cannot chew at all, so anything he's to derive nutrition from has to be pureed at this point (he will start OT for feeding issues as soon as we get my car back). My guess is that the osmolality of this toddler health stuff is just too high for him (someone else posted that they had this issue with concentrated elecare in one of my other threads). One of our three nutritionists has suggested I add some oil to the formula to boost the calories. I have calls in to the other 2, but I figured this was a better source for BTDT advice.
:FTR, he lost about 10 or 12 ounces (varies by scale) in 8 or 9 days.
Sorry to ramble- I'd love to hear any thoughts you mamas have (on this particular formula or anything else in my post).
Oh, another thing- his thrush and mottled tongue have disappeared for the first time since he got a bottle of supplemental formula at 6 months.
to you and your lo!
but can your LO tolerate coconut? If so I would probably be feeding large quantities of avocado and coconut milk because they are so high in fat. Plus adding oils to everything he eats if he can tolerate any and if the taste is palatable.
At that time, I had no idea corn was an issue for us... STUPID CORN!
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