Tube Fed Baby

Have you heard of Isotonix Digestive Enzymes? It's distributed through Market America. I know it has helped a lot of people with acid reflux. It comes in a powder form that you mix with water and is about $30 for 90 servings.

They also have a product called Ultimate Aloe that I would recommend giving him with the digestive enzymes. They even have flavors like strawberry kiwi so it actually tastes really good.

I haven't heard of a case yet that the combination of these two products hasn't helped. Let me know if you need more information about them.

Good luck.
B.

Hello,

We have 2 1/2 year old with other problems and I too knew her eye was getting worse...I brought it to the physicians attention and he denied that she was getting worse. Finally we took her for another opinion and he said she had vision loss....I knew I needed another opinion but I needed to trust my instincts. The first doctor was not willing to listen to us. My advice, get another opinion.

I have a 8 1/2 month old son who also has severe acid reflux. We first noticed it when he was a few weeks old, his doctor switched his formula to soy and put him on prilosec 2x a day. After a few months of it not improving, actually getting worse ( coughing, gagging and vomiting) we saw a GI specialist who put him on Erythromycin 3x a day. He is a completely differant child now! The medicine has helped him so much! He no longer vomits or coughs will still occasionally gag when eating baby food. I hope this helps!?

My daughter was born at 26 weeks and was also tube fed for about 7 weeks. As soon as we started to bottle feed her we had problems. After an upper GI at Children's we found out she had acid reflux. She was on a medicine called Protonix that we could only get at a pharmacy in Independence. It had to be specially made, but it worked. She was on the medicine until about 13-14 months of age and then we gradually started taking her off of it. Our doctor also told us that we would probably grow out of it, and she did. We haven't had any problems since.

I am a 34 year old SAHM with a 37 month old daughter. I have been married for 14 years.

Most babies and kids w/ acid reflux or GERD **also** have some underlying food allergy (for babies, it's typically cow's milk protein allergy and/or soy protein allergy) - has your son ever been trialed on hypoallergenic formula and taken off of any/all cow's milk and soy products for the period of 3-6 weeks, to see if his reflux improves (or even disappears)?

Studies are showing that for babies w/ reflux, many of them are diagnosed as having reflux or GERD, but their underlying food allergy is being MISSED. The most effective test is not necessarily a blood or skin test for allergy --> the most accurate test is to remove the cow's milk and soy proteins to see if the symptoms lessen and reflux improves.

Just something to consider, if it hasn't already been tried!

I will keep you in prayer, Krista. My daughter had acid reflux - even into toddlerhood. Otherwise, she seemed very healthy. I found all through her 2-3 yr old stage, she would frequently have stomach acid come up. It was horrible for her and us...and I was concerned about her stomach & teeth (as the acid really wears down the enamel). While she was breastfed for her first year of life, there was no acid. So, I knew to watch as we introduced foods for reactions. Unfortunately, by about 15 months we were probably introducing something new every week or so ... Problem is, foods stay in our system for approx. 4 days. Although one food might have caused sensitivity, adding another that would make her system sensitive overtaxed her precious body... but by that point, of alternating what she ate on each day, it was just too much.

I prayed about it, and scaled back as much as I could. I made as much of the food as I could into puree. At 3 yrs old, Dr. wanted to prescribe acid-reflux meds, but I wasn't content with that, as I'd just been diagnosed with food allergies myself that year...then told there's a decent chance my children would have some allergies. So, back to the Dr., I asked to see about testing her for problems (oh yes, and she had arthritis like pain in her legs and arms. Again, remember, this is a healthy little girl who looks just fine when playing on a good day... Dr. testing her for rheumatory arthritis, but she didn't have the indicators. Next, he went ahead and referred us to Dr. Fosso. She was lovely with my daughter (oh, and other children) ... when asked what I thought it might be causing my daughter's problems, I went ahead on that list and checked EVERY SINGLE THING I'd ever introduced her to. I was shocked at the results. She had so many allergies... so we began eliminating them from her diet. Most of them, we're told, she might outgrow as she gets older, but we totally avoided them. Here and there over the past 3 years, we introduce something back - in a small amount - just to see how she does (we have an epi-pen...and have never had an anaphylactic reaction, but have been informed it could cause one...By the way, anaphylactic can mean attacking ANY ORGAN...and the skin is an organ - as well as your heart and lungs. I'd never looked at it that way. So an allergic reaction might cause extreme hives externally one time, but something internal next time. We don't know, so it's always safest to avoid!) Back to the re-introducing, they all still cause acid, itchy red elbows and wrists, or leg aches...depends on the food.

My suggestion would be to pray about it...and step back list what all you feed him, and put him on a rotation diet...basically, exclude one food from his diet for say...one week. See what happens, if it gets better, then that food was the problem. If it doesn't disappear, try removing a different food. Hopefully, this will lead you to finding the culprit. (May I also mention to watch the diaper? My daughter consistently had red streaking in her diaper on various days....and we eventually figured out it was after she ate carrots...so they were causing her to bleed.)

Hope this helps!

Blessings!

hello i have a four year old daughter who is g-tube fed/ and reflux as well and a 7 mo. old who has reflux and milk and soy allergies i thought i would add that because i read it on one of responses. my son also cried alot!!! due to his allergies i mean non stop because it alcerated is intestines and stomach so i think you would know if it was a milk and soy allergy. remind your doctor not all cases are textbook. my daughter cant even bend over without puking and she has to lay still for atleast a halfhour or her feed will come up. she is also on meds well both my kids are on meds for reflux but sometimes it just doesnt help like in my daughters case. i am sure that you have probably already had a swallow study done if not ask for one he made need thicken liquids as well.you know it may be a combintation of things not only the reflux but being on a g-tube for so long he may have some oral sensory problems.do you see a speech or eating therapist aswell if not your ot could possibly get this as well.. it is called a z-vibe and if you get the whole kit it comes with spoon connectors as well. they sell them in super duper publications which is a book that sells alot of what therapist use for children. superduperinc.com is the web site.

please know that doctors dont know your child as well as you stick to you gut instinct if you think it is getting worse be persistant u are your childs advocate. otherwise his problem could fall threw the cracks for a while and turn around and bite you later!!! i learned the hard way

well i hope of was of some help. C.

My son wasn't tube fed for acid reflux but he did struggle with the whole cough/gagging/vomit thing. He's 10 1/2 months old now and was diagnosed w/ allergic colitis at 3 months. We actually went to a GI specialist at Riley and the doctor put him on Zantac for a little while which didn't help, but what really worked was adding rice cereal to his bottles. 1 Tablespoon rice cereal for every 2 ounces of water/formula. They think he also has a problem w/ just simply swallowing correctly b/c if we use anything much bigger than a slow flow nipple he has trouble again. I'm not sure if your son still uses a bottle or not but this REALLY helped us. We still have to give him breaks during his bottles once in a while but he rarely even spits it up now. Hope this helps.

Krista,

I am not sure where you are from, but my nephew had the same issue. He had his tube put in when he was 1-1/2 his did not come out. His gag reflux came so bad we had to carry a suction machine around everywhere incase he started gaging. If you do not feel like this DR is meeting your/son's needs get a second opinion you may want to cut back on the baby food until you get another opinion or very tiny bits using the tip of the spoon just to give him a taste.

I had preemie twins and my oldest daughter was also a preemie. hang in there.
Great job on the increased feedings! it may take longer than 30 min for a meal for a while and the smaller the bites the easier it is to get used to the sensation, slowly increase the bite size and the shorten the time of a meal to encourage the stomach to stretch and the flap at the end of the esophagus to stay closed. one of my daughters had to have hers operated on. it was too large and would sometimes obstruct her breathing. finding the right balance of meals that work and medication for acid reflux is key
In Hebrew patients means long suffering. I wish you strength and endurance.

Is it possible that the child has scaring from the reflux? Has he had a scope to determine if there is damage to his esophagus?
Some stricture from scaring might cause the coughing, gagging and vomiting after eating.

My granddaughter is G-tube fed. She will be ten this year.

P.

All I know about that is that your baby will eventually outgrow it and won't need the tube, but every baby's timeline is different!

Krista,

since you are already seeing the OT, mention it to them, they can then make a referral to someone to further eval the symptoms. Sounds like he needs a swallow study and upper GI. Certainly want to take care of it, since he is starting to feed orally, you want to run with that and not have more negative sensation and him not want oral stuff anymore. Your OT is perfect for support in this!

If it is getting to you that much, even though you love her doctor, you need to get a second opinion to ease your mind. I am sure if the doctor says she will grow out of it then he knows what he is talking about but as i would feel i would want another doctor looking at her to ease my mind.

My grandson Joey had his stomach rebuilt when the Micky Button was installed, they took the top of his stomach and tied it around his esopicus, so he can not vomit. Because he can not swallow he can have nothing in his throat.
We are now introducing him to Pedasure Formula, it is a heavier blend and more calories.
Even though you like what the OT is doing, go very slow on the jar food. Since you find he is getting worse this is more then likly the cause.
Good Luck.

Hi Krista,

My brother's son had this exact problem. The course of action was the same as yours - working with an OT. He was tube fed for the first 2 1/2 years of his life (not fun)and then eventually learned to eat. He is now 3 and is completely done with medical care and eating on his own.

The best advice I have is patience. You will probably receive a lot of unsolicited advice and criticism, but tune it out and continue to do what the doctors advise. He will eventually be fine.

I have a son who is severely disabled and was eating on his own until July. He reflux was so bad that he was geting pneumonia all the time. We finally decided to do the feed tube. Even though he is on a feed tube we still had to gove him his reflux meds for about the 1st 3 - 4 months after his surgery. My suggestion would be to talk to your drs about med for the reflux (my son took prevacid) and try feeding him smaller amounts. If he still had the feed tube attached he will still get all the nutrients he needs. Take it slow, his swallowing will get better as his reflux gets better, just dn't feed too much at one time. It would also be a good idea to have him sit upright for about 30 minutes after he is done eating to see if he can keep the food down.
Good Luck!
Jenn.......

My nephew was born with severe seizures and relux. The drs said it was a simple birth defect in his tummy. They did surgery and put in the feeding tube. At first, his diagosis was grim. Mentally retarded and lucky to see his third birthday... well, at the age of three, they took his tube out, he worked lengthy with a GI specialist and a PT three times a week for development.... My nephew will turn 16 in August and perfoms top in his class... well, when he wants to. Don't think of it as a hard or perminant thing. My sister has a closer bond, as do I, with him because the feedings were so frequent and we had to learn tube care. Love your baby, bond with him, never give up hope. We didn't and we love him for every tear we shed over his care. I hope this helps in a way. Good luck with your little one. Many blessings to you and your family.

I've never had this problem with a baby but I do have many issues myself. I was just wondering if your son had been properly checked for hernias. I have a hiatal hernia and when the acids in my stomach churn, I vomit. It hurts a lot. My back and near my sternum area. This might be something to look into. Good luck and keep us updated. Shannon

Krista - Just to clarify - your baby has a G-tube inserted in his stomach or a NG tube down his nose to his stomach? I am guessing you have a G-tube. Your baby NEVER nursed or nippled a bottle after his g-tube placement? Or just has problems with solids? Is the GER the only reason he had the G-tube placement? If it was for refulx, when they put in the G-tube, did they also do a Nissen procedure where they surgically tighten the top part of the stomach? Sometimes that area stays too snug and solid foods don't go in easy and causes gagging. With medication, time, and practice eating - it gets better. Has the therapist suggested a feeding study? That is where they feed your baby, watching on a special xray and follows what is happening to the food as it goes down the esophagus. There may be a structural or mechanical issue going on. All the suggestions re allergies are very good, but I would check on this, also. I am making another assumption - your twins were premature and your one little guy is more "high maintenace" health-wise. Does he see a developmental pediatric specialist besides his regular doctor? Ask your therapist or pediatrician for a referral to a developmental specialist (usually at the local children's hospital) - they would be very good at getting to the bottem of what is going on. God bless you and your family!

While my son's case of acid reflux isn't that bad, he does do the coughing, gagging, and throwing up. My son takes Zantac twice a day, which helps some. What my doctor told me was he will outgrow it, but most cases, when they have cases like ours, the child will need to be tested for allergies. I have horrible environmental allergies and have been on injections since I was 8 years old. The bad part is they can't be tested for allergies until they are 3 years old, so I have to keep with the Zantac until then. I know my son can't drink the regular formula. He was on soy for a while and now he is on Similac Sensitive, which is lactose free and that seemed to help. So, maybe try soy milk or a varation to the regular vitamin D milk, if that's what he's on. I know it is so hard to sit there and watch your child go through this.

I am sure your GI Dr. is great, but I would truly recommend taking your daughter for a second opinion to see Dr. Emery Collins - He is through Akron Children's Hospital ###-###-####) My daughter had a lot of digestive problems and he was absolutely amazing. He was kind of baffled by her at first because it took a while for everyone to figure out the root of the problem - but I was truly impressed with his persistance in helping us and would highly recommend him to anyone. Hope this is helpful.

My grandson is 4 months old and he was diagnosed with a burnt reflux muscles do to the hospital mixing him up with another baby who was supposed to eat every two hours. The first night he was force fed by a nurse. She had him drink his bottle in five minutes time. My grandson is now on prescription zantac twice a day. It has helped quite a bit. He still is spitting up from one feeding to another, but he is not in the excrutiating pain that he had before he was put on the medicine.

Are the doctors positive that Acid Reflux is the problem? My friend had the same problems with her daughter. After she was a year, she quit gaining weight and they started doing more tests. They finally decided it was her digestive system - I don't know all the details, but she digests her food at a very slow rate thus making her feel full all the time and would gag and throw up when she had to eat. She is on a feeding tube now and is doing much better but they are still struggling trying to fix the problem.

I don't want to freak you out but wanted to share her experience just in case it may be something other than Acid Reflux.

Krista,

This is going to sound crazy, but have your baby's cholestrol checked. We have a 2 year old granddaughter who has been tube fed her entire life. It took the doctor's almost that long to figure out why she wouldn't eat. She has very low levels of cholesterol. She also has lots of food allergies. This has caused her to have severe acid reflux, she was throwing up all the time, it was impossible to get her to gain weight. She is still small for age, but is now beginning to make large improvements in her development. Unfortunately for her, she will not "outgrow" this syndrome. It is genetic and her parents will have to deal with it. It is severe enough that she may never be able to eat normally, but at least now they know what kind of food she needs. She "eats" 3 egg yolks every day to help raise the level of cholesterol in her system.

I am not saying that this is what your child's problem is, but to have it checked. Also have your child tested for food allergies. It would be a shame if it is just an allergy to milk or wheat or whatever that is actually causing the reflux and not acid.

I guess I just want you to know you are not alone and that there may be other reasons for the vomiting and acid reflux. It took our granddaughter's doctors almost 2 years to figure out what was wrong. You don't want to go through this that long if there are some simple solutions to your problem. These doctors were experts and the best in their fields and they missed the boat. Our sweetie is at least 19 months behind in her develop because they could not figure out what was the real problem.

Good luck. I sincerely hope it is just an allergy.

My twins were tube fed as well, but were drinking from a bottle when they came home. My daughter had acid reflux and it was exhausting. She did ultimately outgrow it but it seemed to take forever.

These may be things you have already tried, but they were helpful to us and our daughter. We went through three different medicines in conjunction with Mylanta until we found one that worked. It was Pepcid for us prescribed by our GI, Dr. Tomer, at Children's. We added cereal to each bottle and more in the morning and evening. We kept her upright for at least 1/2 hour after eating. We made our own baby food. Just use a blender, food processor, or coffee grinder. We froze the food in ice cube trays and put them in ziploc bags. That way we could do bulk in advance and have it ready to go. We found that most baby foods had ascorbic acid and she didn't need any additional acid. We stayed away from acidic foods as well.

One magical day, it just seemed to subside. Of course I can't pin point it now due to Momnesia, but it was a beautiful day!!!

Hang in there and trust your instincts as a Mom!

Good luck,

Susie