My Son's Eating Issues..

Poor little guy. I'd have food issues, too.

A g tube isn't the worst thing in the world. In fact, I've known several kids with similar problems who after a few months to a year on a gtube (and a lot of growth) had their food issues "disappear". They'd never been anything BUT hungry, so they didn't know anything different until AFTER the g tube.

Are these Dr's seeing him GI specialists?

That would be where I'd be taking him.

I agree-this is a lot more involved than a kid who doesn't like baby food or is a "picky eater."
I think you really, really (with all of the medical issues involved) need to keep seeking medical opinions and don't stop until you find a doctor that knows how to help you--and him. I don't think you'd be asking this question on this type of forum if you were getting good medical attention/advice.
God bless and best of luck to you and to him!

Have to echo the first poster. If your doctors so far are not PEDIATRIC GI's (not regular GIs), that would be my first move. And mention the severity when calling for an apt, as often there's a waiting list save for emergency cases.

He could have ulcers, he could have a hemangioma that is causing issues in his trachea or intestine, etc...
I don't mean to scare you, but something is wrong and I can't believe that they haven't done an MRI or Ultrasound to take a closer look yet. Poor little thing!

If you are open to alternative medicine and willing to listen to their opinions, I would advocate that direction before getting a feeding tube. FOOD can be a body's worst enemy if the body is allergic and/or intolerant/sensitive to a food.

I know. I found out at the age of 40 that I have an allergy to casein (means no more cow's milk or cow's milk products), a severe intolerance to gluten and soy, and various other intolerances to about 21 other foods. All it takes is an allergy or intolerance to ONE food that, if it isn't caught and addressed (meaning, you stop eating the food that's making you sick), you will develop Leaky Gut Syndrome and, from there, your body WILL develop other problems with food that, if those problems aren't found and addressed, you will continue having problem after problem after problem, all the way down the road your entire life.

It is pretty evident, looking back on my life and how sickly I was (constipated, always sick, very picky eater, etc.) that I most likely had the allergy to casein from baby on. Then, when that one wasn't resolved, I picked up gluten, then soy, then all the others (to include both Baker's and Brewer's yeast, beef, lots of different fish and seafish, apples, bananas, I could go on and on...).

Oh! You can be allergic and/or intolerant to a specific food and absolutely crave it! Oh, yes. I remember when I was in high school, how I would literally drink myself through gallons and gallons of milk. I didn't know it at the time--I just discovered all of my food issues a couple years ago--but the body CRAVES what it is allergic or insensitive to. So just because your son is drinking lots and lots of soy milk...doesn't mean he's not horribly allergic or intolerant to it.

And I also agree with a poster that your son could have a Sensory Processing Disorder issue with his food. My daughter has SPD, and food was a major chore. Oh my goodness. Only certain things she liked, only certain flavors or textures. Only eats one thing at a time, don't ever think about mixing anything together. And bland. She doesn't like any spice or flavoring on any of her food. We're working hard on this, and she's made leaps and bounds (she's now 10). But it is a very, very hard road to hoe.

My best advice to you would be to find a good Naturopathic doctor (mine has a PhD in microbiology; he gets down to the cellular level and works on fixing the issues/problems where the root is) or Osteopathic doctor. They are trained to work with these types of issues. Along with looking into seeing if food issues might be a factor, I would also have them check your
son for heavy metal toxicity. I had severe heavy metal toxicity, as did my daughter, and we both went through chelation (about 3 or 4 times). WOW! Did THAT make a huge difference!

Also, Dr. Lucy Jane Miller, PhD, OTR, has opened the STAR Center (Sensory Therapies And Research), I think in Colorado, where they can and do work with children who have an eating/sensory issue problem. Her book, Sensational Kids: Hope and Help for Children with Sensory Processing Disorder (SPD), has been a godsend for me and my family.

One other recommendation I would like to make, if you are open to it, is to search out a medical intuitive/healer. It is incredible what they can do. I was making very good progress with my naturopathic doctor and still not getting the healing results that I needed. Finding a good medical intuitive/healer has made all the difference in my own recovery.

Good luck.

First thing I would do is either let him have as much formula as he wants and/or switch him to goats milk. Farm fresh would be the best.
My daughter who is now 6 didn't eat much solid foods till she was 14mos. She even gagged on her first b-day cake!! She started getting teeth at 11 mos and till she could chew, she gagged.
Also should mention that goats milk is healing and if you could get it raw, it will actually heal stomach ulsers so this might help the reflux as well.

Have you checked with an occupational therapist? It sounds like a sensory issue.

I could have written this myself about my nearly 1 year old boy. he weighs 16 pounds and he will be one in 15 days. He's not even on the chart for weight. My son had heart problems though and a mass on his necks. So from 2 to 4 months he dealt with the mass and after three surgeries it seems to be gone then in the 5th month they did open heart surgery.

Anyways he doesn't eat. He weaned himself at 8 months and we started soy milk and solids because he flat out refused formula. Still hasn't helped. Now we can't get him to eat anything. He'll drink soy milk like mad but when you go to give him food, and yes I do food before I offer soy milk. But we are at our wits end and our doctor is saying he is gaining even if it's ounces a month so she's happy. I'm not naturally. He's small and now he won't eat much at all.

Now on the other part of your subject I was born with a bad stomach. My mom loves to tell how I screamed non stop. She would tell how I started out in a crib in their room, then I was moved to the walk in closet (it's big don't worry), Then the dining room downstairs because they couldn't comfort me or get me to stop. My big brother likes to tell me how he contemplated smothering me with a pillow once I got to the dining room because that was near his room. My biggest sister when she was forced to watch me would call all her friends to come over and visit and my middle sister would just disappear,

Anyways here I sit at 29 and I have horrible stomach problems still. I do not feel hunger pangs. When I do eat the pain can be unreal. I actually have like PTSD from eating. I prefer to stick to the BRAT diet most all the time. I take all sorts of meds including all the one he takes plus reglan and others. I have a butt load of diagnoses but it doesn't really matter they just try and mask my symptoms with medicines. That is all they've ever done since I was born. So I've had feeding tubes and they aren't that bad. As an adult they suck because they go down your nose and it's beyond irritating. But it's a good option. All that I can remember I was only hooked up at night to the machine. The rest of the time it just was there. To be honest if I can't get something going on with my son in the next two weeks I'm going to go demand one. He can't get any smaller. My husband just wants to keep trying though. But I'm at my wits end.

Anyways I'm just commiserating with you. I'm so sorry you are going through this. I'm so scared for my son too.

I would either demand a referal to aPediatric Gastrointerolgist at a Children's hospital, or give in to the doctors you have and get the feeding tube. I think I would be camping out in the pediatricians office until they make an appointment with someone who can give you new answers or tell you definatively that the tube is what he needs to resolve his issues, if for nothing else, to get your baby some releif while the doctors figure out what is going on. He must be miserable.

M.

I agree with both MechanicMama and Heidi. He needs to see a pediatric gastroenterologist and goats milk works wonders! Fresh from the farm, non-pasturised, staight from the nanny!
One of my daughters threw up every three days or so. Ped. kept saying reflux. My mom kept saying allergy. Coworker recommended the ped. gastro. at our local (hour away) childrens hospital. She was awesome! We put both daughters on goat milk and they are both doing great.
(We did both, although the other doesn't have the allergy because they are twins and it was too difficult to make sure allergy baby didn't get hold of sisters sippy cup)
Oh, by the way, if an allergist says it cant be an allergy because the reaction doesn't show up right away, dont believe him/her! The ped. gastro. said that delayed absorbtion causes delayed reaction. Her little body held onto all that formula/milk it didn't want to digest until it couldn't hold any more. Then when she tried to digest it out it all came, curdled and looking like cottage cheese sometimes, but most of the time thick liquid and violent to the point it came out of her nose as well as mouth, repeating anywhere from 3-8 times. It was so awful. (The gastro. sent the allergist a not so nice letter. He wasnt pediatric either)
DD still has a VERY limited selection of food she will eat although to start with she would eat any stage one or two food we gave her. It got to the point where she stopped eating anything other than milk or formula. Ped gastro said it was because the thick, cool liquid felt good on her throat. It took us from month 8 to month 14-15 before it was all figured out and she still, at 2 1/2 yrs. will only eat a few things. (any bread, cracker, chip, pickle, onion, green olives and occasionally a little peanut butter) The other day she ate a few bites of daddys Ramen noodles. I know they are not good for you, but I was so happy to see her eat something different!
I hope you figure it out soon and please keep us posted.

i had a similar issue with my daughter she HATED baby food, and i stressed for years about her eating problems, still have some trouble, try soft table foods like peas, green beans mashed tater's, bannana's ect let him finger feed himself, he'll eat when he's hungry, don't make it a stressful thing for him or he'll never like meal time, my dr threatened tube feeing too, but i didn't think my daughter needed it, so i went and got a second opinion, yes she's little, but tube feeding is not necessary, and never was.

If you are not interested in alternative medicine approaches, move on to the next response. If you are open to them, read on:

I would try an osteopath (send me a private message if you want the name of the guy we took our daughter to) or a functional medicine practitioner (again, I have some names if you are interested). Osteopath might have ideas about structural issues that are impacting the whole system. Functional medicine doc might have ideas about micronutrients that will help the GI tract balance.

It sounds very challenging and yes, pretty scary, so I hope you find an approach that resolves this.