Right now my 15mth is still on Nutramigen Lipil but is $23.00 a can it last only a couple days a can and then he uses Polycose for added calories to boost it to 30 calories an ounce due to a metabolic disorder. He is still on formula since he is gtube fed. We tried raw cows milk and he didn't tolerate that well and I am not much for soy milk but last we tried he couldn't tolerate that as well. In the NT book I have it has a recipe for homemade formula, however it calls for cows milk. Is there another substitute I can use that would still have a good amount of vits./mins? I wish I could have bf, which were my intentions while pregnant, but he spent 3 mths in ICU after his birth and was on TPN ( an IV nutrition) for the first 2mths before his had his gtube placed and due to the stress I guess, I couldn't pump more than a 1/4 of an once a time. I want breastmilk from donors, but can't afford the $2.75 an ounce they charge for it, but that would at least boost his immune system, he has been hospitalized over 12 times I know since he came home 1 yr ago. He is immunocompromised due to many infections and illnesses and a cold to him lands him back in the hospital. He also has a trach due to a floppy airway (he will outgrow in another year or so). He had open heart surgery at 7 days old..etc etc. etc. Any suggestions...is there anything I can give him to boost his immune. Just wonder what I give him how it might interact with other meds he is already on. TIA
Have you tried to get a mom-to-mom BM donation? Maybe try posting in the Finding Your Tribe forum for your area to see if there's anyone willing to give you a few ounces or sell them cheaper than a milk bank?
I would NEVER trust another woman's breastmilk on a child with food intolerances. If she slipped and accidently ate something with dairy, your child would suffer.
some folks have a better time with raw goats milk. You might try that.
I am sure he has had a whole bunch of antibiotics with all of the surgeries. This has probably wrecked his gut flora. I would look into seeing if you could follow some stuff to repair a leaky gut. Digestive enzymes are a boon and he is old enough. they could be mixed with the formula. There are a few hypoallergenic formulas out there.
I would see if you can find Missy here. She has been down that road. We have never had to sort out and choose a formula but we have been living with food allergies/intolerances for 5.5 years now...
I hadn't even thought about the antibiotics and leaky gut. I do give probiotics during antibiotics and for a week or so after but he gets yeasty alot anyway. Must be the flora population. Glad that was mentioned and will most certainly read more on that! Thanks for the links as well. Will check those out. I do have a goat farm not far at all from here, we used to get goats milk from them a couple years ago for about two years or so and it was pretty good. They do pasteurize it, they said it helped with the taste. My 4yr old could only drink goats milk after he self-weaned from BF'ing until just last year and every now and again we would try a little cows milk in with the goats milk and finally he had no ill effects from it, although I wonder if even though he seems fine after drinking it, no gas, doesn't complain his tummy hurts like he once did, but his eczema is horrible. I often wonder still. Anyway, Jonathon has been on antibiotics so often I lost track. From surgeries that required antibiotics afterwards as precautionary, to bacterial meningitis that he caught while in the hospital (6 different potent IV meds for 21 days for that!), sinus infections out the ying-yang, trach infections and he also has MRSA. So any antibiotics he gets are pretty strong, but we still have to take caution since his doctors worry that one day nothing will work. What really put a number on his immune was not only all the infections/surgeries etc, he has been on cortisteriods to reduce swelling in his lungs I think 6 times the past year. With the leaky gut syndrome (I think I heard it called that once), could that cause diaper rashes on and off (more on) that seem really hard to get a handle on? THANKS SOOOO MUCH!!!!!!!!!!!
Hi! There is a formula called Bright Beginnings that is soy-based, 30 cal/oz and it's made for older kids ages 1 and up who are tube fed or have eating issues. It's reasonably priced and you might be able to get insurance to cover it. Just do a search to find their website. They do home delivery, you can't find it in stores.
Have you tried Neocate, Peptamin Jr, and some of those other hypo formulas for older gtube kids? It's not very tasty but since he has a tube he can get it without worrying about the taste.
BTW my daughter is also a g-tube baby!
So I just wanted to say hello. My dd is working on tube-weaning and gets most food by mouth now (75% on a good day, 0% on a bad day), but when I tube feed her, I no longer use formula. I bought a Magic Bullet blender and I pretty much just blend up whatever we eat for dinner and put it down the tube. That thing can puree almost anything if you add enough water! I just make sure to put it through a strainer first to get out any chunks but most of the time it doesn't catch anything in the strainer. I think real food is SO much healthier for them than formula, if he is able to tolerate it and digest it okay.
I know this is a pretty old thread, but I would reccomend Neocate Jr (there are a few formulations) as it's 30cal/oz and complete nutrition so you at least know he's getting enough everything as long as he takes in enough formula. Evan couldn't tolerate the JR so he's still on the infant at 17 mos, but is doing well on 20 cal/oz (I think I make it sometimes closer to 23) so we haven't messed w/ it. Our insurance covers it and there's a few letters on the Neocate website to try and get insurances to cover it if they won't at first. Evan also has many food intolerances/allergies so has a very limited food intake and will probably be on this till at least 2.