Okay all you seasoned reflux moms--
Please give me your advice on what formulas have and have not worked for you and what calorie fortifiers work and where I can get them. I don't think Seth (6 mo.) can tolerate any milk-based formulas. He also did not tolerate Neocate, Nutramagin, Enfamil Lactofree lipil, regular lipil and alimentum. Right now, he is on Prosobee Lipil (Soy formula). I am beginning to wonder if he has a corn allergy and I am seriously considering Goats milk. Any thoughts????

Hi Kelly

Well, Trent is on Pediasure, which has worked wonders for him, but I believe it is milk based.

I have heard really great things about goats milk, although I have not personally tried it.

As for calorie fortifiers, I have used Polycose, and Moducal (made by Mead Johnson). They both worked well, although the Polycose dissolved better than the Moducal.

Phyllis and Janette both have used calorie fortifiers as well, so maybe they can chime in on this one.

Amy

Well, as you know Kelly, goat's milk worked the best for us, but you can't use it for infant's unless you work with a doctor or nutritionist to get the right recipe and I don't think you will be able to find a doctor willing to do that :( . You can buy goat's milk based infant formula in the UK and I seriously considered looking into getting it shipped to me from there.

We did Similac, Isomil, Good Start, Alimentum, Nutramigen, Vivonex T. E. N., Vivonex Pediatric, Compleat Pediatric, Pediasure, and Neocate. There may have actually been more, just can't remember. The Compleat worked well the first time I tried her on it, when she was just under a year (we added water to dilute the amount of protein since it's for kids over 1) but the last time was a miserable failure. The Neocate has been the best overall and she's been on it for over two years. Similac, Isomil, Pediasure and the two Vivonex's were the WORST! Good Start wasn't too bad, oddly enough.

As for calorie fortifier's, we did Polycose for awhile but she really can't handle extra calorie's at all, so now we just mix the Neocate to 22 cals and leave her hooked up longer.

Anyway, I think if you can get a doctor to work with you on the Goat's milk, then go that route for sure!

Hi Kelly!

My sister-in-law swears by goat's milk. Unfortunately, I didn't try it long enough with Evan to see if it works. It was quite expensive though.

As for calorie boosters, Nestle Caloreen is excellent. It dissolves really well! I order it through the Sick Kids' Hospitals specialty foods store, and they ship it here by courrier.

Hey ya'll (I'm from the south!!)
Thanks for your advice and input. I am going to try the goats milk today. Seth has been having a TERRIBLE few days and has lost 1/2 lb. in 4 days. I am getting panicked. I hate this!!!!!!!!!!! I just called his GI doctor and said that if he didn't have any better ideas, then I was putting him on goats milk. I have nothing to lose at this point. The reason that I am so frustrated is because he got his NG tube out 1 1/2 weeks ago and was doing great!!! He was eating well and not refluxing. Well, 3 days ago, he shut down again and ate 8-10 oz. in a 24 hr. period and no solids. Yesterday was worse, and today he hasn't had anything and no wet diapers yet, so looks like the tube is going back in by tonight. I just can't help but feel like a failure and completely depressed because I don't know what else to do to help him. He is obviously in a bad reflux flare up. I hear it all day and see stuff in his mouth and then he swallows and screams. :cry: He is so clingly and I feel so terrible. I appreciate the advice and support. You all are the best. I hope your week is better than mine.

Kelly,

You are NOT a failure! Keep on doing your best. Ask your doctor about what you can add to Seth's goat milk to increase the fat content. Babies need more fat (until about age 2 years) to help with brain growth and development. Let us know how Seth does with the goat's milk.

Kelly,

Please do not think you are a failure!!
I used to think that way too when Trent would eat well, I would blame myself.
But, I finally just had to keep thinking to myself that it is not our fault that we have children with reflux. We just have to do the best we can with the hand we have been dealt. If you know you are doing all you possible can, then you are definitely not failing!! IT IS NOT YOU'RE FAULT. Please do not blame yourself!

Amy

Oooooh, Kelly!!! HUGS! I'm so sorry things are so tough right now...just remember, it will get better! I know how awful you feel, and how you are blaming yourself, we all do it at some point. Just try to listen that little voice of reason in your head. I know it's in there somewhere...deep down you know you are not to blame...we all know it. That stinking mother's instinct is to always blame ourselves...don't do it to yourself!

Remember with the goat's milk that there is too much protein in it, his little body can not handle it, ask your GI for a recipe to modify it.

I hope things get better soon! Keep us posted.

Kelly, I have no advice here, I wish I did. I hope things go well with the goats milk. Please don't feel that you are a failure. I felt that way for quite some time, and when I tried to wean Meghan off of prevacid, I realized it's not my fault. Needless to say, she was back on meds within 10 days.

Take care,