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GFCF with g-tube, and GFCF infant formula

[Note from Dana: I received this information and write-up from another parent. It is not my information, but several parents have told me it was helpful. I am NOT a medical doctor, and neither is the person who wrote this, see the first paragraph below which was written by her. Always consult with your licensed medical provider for information regarding the health of your child.]

First a DISCLAIMER!!!!!! : I am not a professional -nor do I have a degree in any thing pertaining to all I now know and am willing to share with you. I offer what I know as a starting point for you to research further, make appropriate medical /dietary consultations pertaining to your own child's needs and then decide what would be in his/her best interests. Please note I have been given much information I will share with you FROM medical and dietary professionals, so in that context there is some solid foundation to some of what I have to offer. Just that you do understand I am not a licensed professional regarding anything medical nor dietary. Just a mom who has had to learn it all to keep my little boy alive and healthy. So far So good - Praise be to the Lord.

Well, My "experience" is quite long and would take a while to cover all the details of but the very very very short version is I had a gut instinct that my son's diet was a lot of the problem beginning at age 2 yrs. when I started feeding him more food (by mouth and tube) cause his behavior was extremely iratic and intense. But even with numerous specialists on his "case" nobody would give me the time of day regarding diet concerns. Even with an extreme history of allergies to "everything" drug and respiratory related already since birth. I first heard about the gfcf diet when he was four yrs. old and asked for two solid years for dr.s to help me get him on that diet. No go. Their reply "too much trouble", too costly, etc. ect. It wasn't until (at age 6 yrs.) as I like to describe it : "the Lord hit me upside the head with the frying pan" did I finally truly "get it" , I ran out of cream of rice and substituted cream of wheat. Needless to say he had a severe allergic reaction that lasted 5 days physically, and 10 days mentally. So from there I vowed if the Lord would help me I WOULD put him gfcf all by myself if I had too!!!! Thankfully the Lord opened the door to various ones professionally and lay (who actually had more knowledge and wisdom than the professionals!) to input what and how to go about moving him from totally tubefed dependent on concentrated infant formula to gfcf food.

Because of his highly allergic nature, moving him to this diet was very difficult. At the same time I was trying to slowly wean him from the baby formula, I was substituting one gfcf food at a time to test his reaction (allergicly) to it. It was painstakingly slowwwwwww; he lost a lot of weight (about 4-6 lbs) but he was only weighing 34 lbs at the time so it was a LOT to see bones appear. It took about two months to get him totally weaned over but as soon as I got all the ratios leveled out he gained back up to 32 lbs almost immediately. That has been just over two yrs. ago and he still only weighs 38 lbs. fully clothed and with shoes on. But he is VERY healthy. Proportioned for his height and HAPPY! Something he NEVER was on gluten. The first changes I saw after going gfcf was he stopped panicky behavior, stopped freaking out at absolutely NOTHING, and began to answer questions , identifying objects I would ask him to touch, etc. his speech verbally didn't make a whole lot of improvement but his social skills and abilities, interactions sky rocketed! As did his cognitive academic skill abilities in the area of answering questions and making choices. (via picture cards mostly but also other ways of communicating began to take form).

Okay, How I did it: since my son was basically dependent on a liquid diet, I figured I needed some liquid base for his gfcf food feedings. So I opted for the Vance's Dairy-free potato milk. Main problem with that is: it doesn't have much of anything in it!!!!! So I first bumped up the protein content (which it has none) I did this by running a trial on a rice protein supplement powder. He responded well to it. Then I needed to add some fat content. I had a lot of trial and error on this one. Tried coconut oil first - he could not digest it well. So then I tried almond oil - serious major allergic reaction. Then coconut milk Which he digested well but would take a substantial amount to get his fat ratio up where I needed it to compensate for what he was used to getting in the concentrated Nutramigen. So Then I added on olive oil. - He digested this well also.

I premix a quart container of his "milk" (Vance's) each day. I only mix it to the 26 oz. mark as that is how much I figured would take to mix down each feeding and get the required calories in him each day. So it is a bit concentrated for the normal mix of 1/2 cup powder to 32 oz. water. I add two rounded tablespoonfuls of the rice protein powder to this and shake it to death. It separates so it has to be shaken before each pour. I keep the coconut milk in a separate container and just add it to each bottle as I prepare a feeding. The same with the olive oil- just add it to the bottle I am mixing at the time. Now if I am going out I will prepare bottles with the Vance's milk mix + coconut milk+ olive oil. Then I bring the baby foods to put in when I am ready to feed him. Of course the milk mixture has to be kept cold until ready to feed.

Then to up his caloric need via additional carbs to the potato milk, I add in extra potato starch flour and potato flakes per meal (bottle).

I basically mix each meal as I go through the day- every two hours he is fed throughout the day. Because he is so limited as to what he can digest I have only a couple staples I use in his tube feedings- I use Gerber baby foods - single ingredient. Lamb and turkey for meat. And sweet potato and squash for vegetables. Also since they removed the milk additive from it I now use the sweet potato /corn mix baby food it is in a smaller jar so I use it when we are out and about. He only takes in about 8-10 oz. per feeding via tube. But then I feed him solids by mouth. Pretzels, crackers, cookies, etc. all gfcf of course. And for him I have to make certain that they are nut free from contamination as well. Which is very difficult to find in the cereal and cookie dept. Everything is at risk for nut contamination. I specially order his cereals and cookies through the mail. About 7.00 for cereal and about 5.00 for a small package of cookies. But he loves them and they are guaranteed safe from allergens.

I also wanted to say that as I am trying to get him over to all oral feeding, if I fix a meal (gfcf) for him to eat and he eats a large portion by mouth then of the tube mixture I just stop feeding the tube feeding as I see he has gotten full on the real deal (food by mouth). But if for some reason he is not in the mood to eat by mouth, a lot of time I will take the food he should have eaten by mouth and grind it up and add it to the small tube feeding I prepared hoping he would eat the meal by mouth. And then just pump it in him by tube instead- hollow victory...but it gets in him one way or the other. Also tube feedings with real food tend to be thicker and so I "milk" the hose with my hand to move it into his tummy. I have found that to be easier on him then using the plunger of the syringe to force it in. It is not recommended to use a pump for feeding meals of this nature. They tend to clog badly.

Why I use the baby food meat/veg mix instead of trying to grind up lots of table food is this: Two years ago, my son's intake was max at 6 oz. per feeding. I realized that no way could I sustain him on real food with that small a tummy holding tank. So for two months before switching to gfcf I worked daily to stretch his tummy. With extra added to feedings and a bit extra water at the end. And gradually adding more and more to his late night feeding - which was already a necessity as he would awaken hungry during the night. So I got his main meals up to 8 oz. prior to implementing the diet. He is now up to 10 oz. for his last (late) night feeding(this feeding all tubed). That is why I had to come up with small but potent caloric substitutes as I switched him from the concentrated infant formula he was on at the time.

And once he was gfcf, it was amazing how much more interest he took to eating orally. It is like he knew that THIS food was SAFE. And he totally took to it, where he balked and fussed at other foods prior to going gfcf. And the very ones he fussed at the most were the most damaging with gluten and casien. Like he had a special sense about him knowing it was not good for him. He loves eatting crunchy foods now, and when he is in the right mood he can eat mostly the whole meal by mouth. But I have learned with him- slow and steady with him leading the way is the only way this program is gonna work. I offer and he either takes it or not- forcing will not work where food is concerned - at least not with him. And also I think kids know us moms get anxious if they don't eat so then they know we are gonna cave and do what has to be done if they don't (tube it). So I just keep the atmosphere extra light and happy and he has been making great progress.

Though I opted not to use a gfcf medical grade formula; for those of you who need and/or desire this for back-up the following are web sites for you to ck out the ingredients to compare the following formulas (which to the best of my knowledge are gfcf -unless production has changed).

COMPLEAT MODIFIED
http://www.allegromedical.com/Home/MoreInfo.asp?P=176874

NEOCATE FORMULAS
http://www.shsna.com/
http://www.neocate.com/pages/neocate_infant.htm

VIVONEX PEDIATRIC
http://www.novartisnutrition.com/us/productDetail?id=86&source=summary

Blessings to All on this Journey,
A Thankful Mom


Infant formula - Loffler/Wright - Russel B. Marz M.D.

1 Quart whole soy milk or almond milk (If I did it again, Id use almond milk)
* 1 cup carrot juice ( I was able to find canned carrot juice with no added ingredients, not even water. I don't remember the name of it, it was in a purple can) ~I saw this a few months ago (winter 2004/2005) at SuperWalmart~
* 1 Tbsp flax oil
* 3 Tbsp pure maple syrup (I found this at Costco Wholesale, just be sure it is the pure and not Mrs. Butterworth's)
* 1 Tbsp Molasses
* 1 Tbsp super blue green algae
* 1/10 mg folic acid

You can order hydroxyfolate and use 1 drop in place of the Blue green algae and folic acid. (remove both ingredients if you use the hydroxyfolate) The number listed to order it was (206) 527-5521. I never ordered it, so I don't have any opinion good or bad on the stuff.

The formula needs to be made daily because it oxidizes once it is made. Store it in the fridge in an air-tight container. If you use the almond milk you should add some protein powder. (Id check how much protein is in commercial formula, compare that to what is in the almond milk, and then supplement accordingly so the amount of protein is the same.)

I found when making it, it mixed the best to put the flax oil first, then the maple syrup, and swish the container until the two mixed. Then I added the molasses, and swished, then the blue-green algae and folic acid, swish, then slowly add the carrot juice and swish it in as you add it little by little. Once that is done, I just dumped the soymilk in and shook the whole thing. I found this way the best so the ingredients didn't separate so much in between bottles.

**NOTE: I didn't have any kind of mixer at the time. If I was to do it again, I would just dump everything in my vitamix or a blender.

My oldest daughter (NT) ate this formula exclusively from about 3 or 4 months old until about 11 months old. The carrott juice will turn your skin a bit orange, but her doctor never ahd any concerns (and he's a doctor that is "mainstream" and does not "believe" the GFCF diet works...that just to say that ANY doctor should not have a concern about it). She has had no problems whatsoever medically, and in fact, is my healthiest child.

[Thank you Jodi for allowing me to use this on my site.]


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