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Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Alex's Mom--Fortified Foods!!!
The number one thing we do is to super size his milk. We take 8oz whole cow's milk. mix in one full packet of Carnatino Instant Breakfast (vanilla) and then add 2tablespoons of a flavoring. We use Nestle's quick in strawberry and chocolate as well as Malt flavor. It comes out to 42.5 clas per ounce!!! WHOOHOOO

We also add heavy whipping cream to his cups of milk. 1 oz. of heavy cream has 100 cals in it. That's a ton esp for such a small amount.

We also only use baby food jars that have 100 cals or more per jar. Beechnut has some good ones.

Here is his feedin schedul minus his water he has to take.

8:00 one 4oz jar of stage 2 food, 1oz heavy whipping cream and 2.5oz of his milk

10:00 3oz drinkable liquid yogurt.

12:00 one 2.5oz jar of stage 2 meat, 1.5oz heavy cream and 3 oz of his milk.

5:00 4oz homemade pears and cream and 1oz heavy cream and 2.5oz of his milk.

I'll make another post as to how to make the pears and cream. It's very colrically dense as well. Basically anything we put in his mouth is fortified...LOL

We have used (in the past through the tube) Olive oil, flax seed oil, butter (unsalted real), and avacodo. Out of those the Falx seed is the most calorically dense. You can get it at WalMart in the vitamin aisle. It should be in a black container. ONLY buy it if it's in a black container. It needs to be kept dark to for it to stay stable. It has something like 45 clas per teaspoon. It will also help with constipation...LOL It's one of the natural remidies for constiaption.

Have you tried adding Benecal or Duocal to his foods???? those have worked very well for some people I know. We always asked but were told no not yet...LOLThey are OTC but I htink you need a RX for the pharmacy to order it...not sure as we never used it.

Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OOPPPPSSSS
I forgot to add that at 7:30 Jedd drinks again, He gets about 1.5oz cream and 3oz of his milk.

As for the pears here is what you need: 1 can of barlett pears halves I use WalMart's brand. Oh and use the one in heavy cream.LOL

2 cup heavy whipping cream

1 packet of vanilla Carnation Instrand Breakfast (CIB)

Quick flavoring

Mix 1 cup of cream 1/2 of the pears without the juice and 1/2 the packet of CIB. I then add about 2tabl. of flavoring.p> I then blend them all up in my Magic Bullet and freeze them into ice cube trays. Each ice cube of is just about 1oz of food.

I do it all over again for the rest of the ingrediants.

It taste fantastic!!!!! A girl could get realy fat on that stuff, or in our case Jedd is gettign fat on that!!!!! LMAO

Oct 12, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
You will find more info about tube feeidng and oral aversion at

www.parent-2-parent.com

You asked on antoher thread about more info so I thought I'd throw that one out there for ya.

Oct 13, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Many thanks to you, Jedd's Mommy!
Hi Jessica! THANK YOU so much for the info!! Thanks, too, for posting your eating schedule. It makes a lot of sense and I'm gonna try it! We have tried carnation instant breakfast (chocolate) and whole milk with heavy cream (with and without sugar for taste). Alex doesn't like either, he pushes it away or refuses to even put his lips onto the cup...any suggestions? Should I just continue to offer it (I'm afraid this will worsen the aversion). I mainly have Alex on solids and am adding butter and cream cheese to everything it seems. I will try your pear recipe (can I change out the pears for peaches instead?). I will definitely check out the website and look into Duocal/Benecal. I have been feeling so depressed these past few weeks and this website has lifted my spirits and I feel like I can be more proactive! Thank you so much for your support and advice!! I will definitely be in touch! :) Warm regards, Linh
Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I have made that recipe with peaches (canned works best, they are softer) and with Pineapple. I log back in later to talk about the aversion and offering foods thing. I am gettign ready to give Jedd breakfast.
Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Jedd's fed and I am showered!!LOL
The one thing alot of people don't understand about feeding aversions is that the aversion really doesn't have anything to do with TASTE. None whatsoever at all period. You can offer the child the best tasting meal and they just flat out are NOT going to eat it.

The second thing alot don't understand is the fact that these kiddos really will just about starve themselves away to nothing if an intervention (like a tube) is not used.

It's not about the child beign stubborn or needing to be given the "proper" food and then they'll eat. Jedd would have literally starved to death and done so with a huge smile on his face.

The remembrance of the pain for some kids is just so great that it overrides the natural instict to eat. Hard to understand unless you have had a child like this. Alot of people here completely understand this point but, the vast majority of persons on the street will NEVER believe you on this point.

To kinda prove that Jedd eats his baby food meats, which are completely disgusting in taste and smell horrid with the same fevor that he eats his pears and cream. Now I ask you which one would YOU rather eat...LMAO!!!!! It makes NO difference to him what so ever at all.

He has been trained and conditioned for th epast year that if Mommy gives it to him on a spoon, he MUST eat it, no questions asked no fussing allowed. We have worked with him to th epoint that he rarley fusses anymore. He really doesn't eat becasue he likes it, pleasure eating. He eats because that is what he has been trained to do. We have taught him that it is unacceptabl eto NOT eat what we offer to him at feeding times. Regardless of WHAT is being offered. Now he can't do textures at all!!!!

Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry PAGER is giving me issues this morning so I stopped and posted to see what was up...

For us after we had all our testing out of th eway and we were 100% positive we were dealign with behavioural eating issues we pushed HARD to get him to eat orally and were very stern with him.

If he screamed yelled and kicked and batted at me or the food, I would very sternly tell him NO NO we don't do that!!!!! Seom times I would even have to hold his hands down to keep him from hitting me. We treated him like a misbehaving child. And would not allow him to do such things.

We started out using a 1cc sryinge literally a 1cc!!!!! Very small amounts. And even then he only got about .3cc of formula at a time.If he took that wegave himi more. We did this in the highchair with toys to distract and in front of the TV. This is all approved by our local rehab feeding clinic. It's the way they do things as well.

Once he could take a full 1cc at a time I moved to a 10cc. After that we moved to a squeeze bottle to sip out of. We use a Sally Beauty Supply hair appliction color bottle. The top has been retrofitted and cut down to use a fish tank tubing or ice cube maker tubing for the straw. IF makes a tight fit so that I can squeeze the liquid into Jedd.

We also worked with solids at the same time. TINY TINY amounts. Like 1/4 of a baby spoon. You can also use the sryinge for htis too, we have done that as well. Of course as all of t his was going on we were still working his pump to give the rest of the feed. We actually ran the pump while doing the oral feeds. So that he woudl learn tha teating (orally) would fill his belly. We did that from the very beginning of th eNG though. He always had to have a pacifier IN his mouth sucking away while the pump was running into him. That way he could cooralte the two.

Once he was taking aobut 2oz of formula at a time we dropped the pump and went to 2 hour feeds. Where I would feed him orally with the sryinge or the bottle thing every 2 hours. Once he was able to do that for about amonth we increased the oral intake to 3oz. Then I went to every 3 hours. All durignthis time we were also working on spoon feeds too.

If finally got to the point that I just gave him and fed a whole jar of food and gave the milk/formula at the same feed. At htat point we went to 4 hour feeds with water juice in between for the "snacktimes".

From there we modified it to the schedule we have now. It was extremely hard work. It was exhausting and stressful. You ahve to remember as well, we were still doing 10 hours of night pump feeds to complete his diet at that point as well. Jedd wasliterally eating 24 hours a day.

I cannot imagine doing what we did without a tube. I IMHO don't think it would be possible withtout the tube to do what we did. On the days wher ehe was only take 2oz every 3 hours, he was soooo NOT taking in enough cals. to grow or sustain life. So the tube HAD to be used.

Only when we showed a HUGE weight gain in June were we givne permission to cut the night feeds. And even then we had to add in 8oz off ree water to his schedule. So it made the schedule even more hectic. In June the actaully told me that Jedd was considered "fat" He was 25%tile for weight but only 15%tile for height. He was short and fat. I really didn't think he was fat....LOL The clinic did. I thought he looked truly good for the first time in his life.

Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I hope this hleps you out some. It really was the hardest thing I have even don ein my life. Extremely stressful. EXTREMELY stressful. There were days on ends where I could NOT leave the house at all. Can you imagine doing 2 hour feeds and having a hcild who will ONLY eat IN thier house IN the highchair IN front of their TV!!!!!! I never left the house.

To a degree Jedd is still this way. He eats best at home with NO distractions excetp me, DH and the dog!!!! In front of his TV. We have had some success with a portable DVD palyer. So it is getting better.

We are still planning on taking Jedd to some type of feeding clinic for inaptient training. I really don't think I will be able to get him to take normal solid foods by mouth at home. We have tried and he just gags and gags an gags and vomits. Out OT and I are at our end. There is nothing else we can do for him at home

He needs in paitent care where they can stick an IV in his arm if he stops eating. I say that becasu eJedd is still NOT uscking up o n any fluid. He only "drinks" when I squeeze th eliquid intohim. We ar enot comfortable with me refusing to squeeze and expecting him to suck and swallow at home. We are afraid he just will refuse to do it and become dehydrated.

Teh two clincis we arelooking into are KKI in Baltimore (the best in the world, literally) and the Richmond Feeding Clinic at Richmond Childrens hosp. If you google them you can find info about them. Money issues may force us to go to Richmod, If I had my choice we'd go to KKI. there is also a fabulous one in Penn. called Hersey's feeding clinic.

My e-mail is onion95@gmail.com if you want me to give you a call just e-mail me and we cn exchange info.

Oct 13, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Thanks!
Thanks! I will definitely email you and would love to talk! I feel like everyone here TOTALLY understands the minutia of our daily lives with the struggle to eat. I dream about high calorie foods for my son, no joke! LMAO! I live on the west coast. I actually am thinking about posting to see if anybody lives where I do so I can start a "Moms and reflux babies" group or something! LOL! You are so courageous and strong with all that you have done with Jedd. He seems to be thriving now and I would NEVER think he was fat. I would love for somebody to say that to Alex because I would know then that he was eating enough! Haha! Thanks for the names of the clinic, I will keep them in mind. Our insurance will prob not cover them that far. BIG HUG to you! Have a high caloric day! :)
Oct 13, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
I forgot
to say that Alex is like Jedd. We feed him in the high chair with every toy except the toilet brush to try to distract him. I have tried the TV as well. Sometimes it works sometimes it doesn't. I was afraid to be stern with him while he was in the chair for fear that he would relate me being angry with him eating. Sigh. Feels like I'm walking on eggshells for this LO to eat. I have tried to diminish the amount of toys that we give him but sometimes it's a losing battle. Also, wanted to know if you give Jedd the same food everyday or do you vary it. I don't know if I'm offering Alex too much (overstimulating) and if I should just stick with the same thing (for more of a routine)?
Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I think there are a few clinics in Ca I'll have to look around. I think the one that pops into my head is Clinic for Kidz, not sure though. I've just look into our coast (we're in VA).

LOL about the fat thing. I looked at them like they had 3 eyes. Jedd is NOT fat by any stretch of the means!!! He looks amazingly well now considering he was only 12 lbs at 6 months. the bare minimum for weight for the heart lung bypass machine and we struggled immensly to get him to that weight.

Oct 13, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
We do a variety of foods. Beechnut has the highest calorie ones so we do them. They also have a variety of thicknesses for stage 2 foods. Some of them are runny and some of them are very thick and stick to the spoon. We try to use all of them so that he at least gets used to the variety of thicknesses. We made the mistake once of switching to a different brand because they were cheaper, NOT good. That brand was all runny and thin. When I switched back he was gagging like crazy.

We offer amybe 12-15 types of stage 2 foods and then the meats about 5 of them as well. I try to rotate them. Unfortunetly Jedd never eats veggies!!!! LOL They have almost NO calories in them. He takes a multi-vitamin every day. I crush it and put it into his food and he takes it that way.

I completely understand not wanting to be stern with him, we only started that when we knew what he was doing was behavioral so we treated it as a behavior problem. Kinda like when the child is doing something wrong and you want them to stop so you tell them no no...KWIM.

We had quite extensive testing done before we did any of this BTW. VERY extensive testing so we knew for 100% sure it was bahvioural form the pain from the past.

I have NO luck in posting picutres here, it's kinda the running joke..LMAO...but my myspace account has lots of pictures...including testing picutre, tube pictures lots of them. Just e-mail me and we can work out a time to talk possibly over the weekend, kinda easier then.

I am also goign to be startign a opart time job at night so tha twill limit my computer time soon. BUT we so desparetly need the income.

Check with your
doctor first!