Moved for Shelley:

I want to explain Adrian's symptons and treatments in more detail here.
1. 3 month olds: Projectile vomiting everything about once to twice a day every day. He arched his back when eating.
2. 5 month olds: starting food aversion and Zantac 0.2cc, twice/day. Vomiting STOPPED
3. 6 month olds: eating well for 3 weeks, then food aversion again. Breast milk intake was decreased to 300cc/day. Increase Zantac dosage to 0.3 cc, twice/day.
4. 7 month olds: Stop Zantac and start Prilosec, 2.5 cc (2 mg/mL), once/day. Eating better (600cc/day) and more for 2 weeks. Starting solids.
5. 8 month olds: Rotavirus - hospitalized for 5 days. Insert NG tube for 7 days. While on Isomil in hospital, he was eating better for a few days. He was "accidentally" put on Zantac (1mL) + Prilosec (2 mL), twice a day. Refuse to eat solids after we got back from hospital. He was back to Prilosec 3cc/day. Then he was eating less again when we started breast milk (maybe allergy???). Then we stopped breast milk and started Isomil (24kcal) again. Three days later, he's eating a little better.

Adrian's never vomitted again after Zantac. He refuses to drink any liquid other than milk. He never demands food. He can sleep through the night, but we had to wake him for extra feedings when food aversion started.

Our Ped suggested fundo based on his slow weight gain and failure to thrive. From 6- month-old to 8-month-old, he gained 10 ounces (12lb -> 12lb 10 oz). Ped thinks he should be 14 lb-15 lb, considering 2-month prematurity.

We did notice improvement since he stopped breast milk (gained 8 oz in 1 week). Sometimes he just wouldn't swallow, but he's not pushing the bottle away like before. Is it still considered food aversion? If he's distracted with toys, he would eat sometimes. I wonder if feeding at night makes reflux worse? Sometimes he refuses to eat at night, then we'll just try every hour until next morning.

I'll keep you all updated after our GI appointment. I appreciate your input on what critical question to ask the doctor.

Shelley

So right now he's on Isomil 24cal, and Prilosec? He's eight months now?

I can not believe that b/c of slow weight gain for a two month period of time he is suggesting the fundo! I think that's very irresponsible of him, doesn't he know the possible complications of the fundo? Sheesh, at this point it's not a word you should have even heard yet and I don't think a surgeon would suggest it for him yet. For goodness sakes, there's still a very good chance he will outgrow it and they certainly haven't exhausted all the treatment options.

I would ask about trying some of the things the other moms mentioned for increasing calories and if the Prilosec doesn't appear to be working increase the dose or try prevacid. Try some periactin to increase his appetite...

FYI, that's about the weight Shae was at his age, and it didn't hurt her any to be so tiny then ...heck, she's only 23 lbs right now.

We have had 2 dr. mention fundo to us. After a lot of research on our own, we have agreed that a fundo would be the absolute last resort. I know that it does work well for some, but for us personally, there are too many possible side effects, lots of which she has now so we don't really see how it would help.
I agree with Roni, there are lots of other things to try first. We are still trying to find the right "recipe" for Maeve as her dr. says.
I don't know how much you're doing w/ solids right now but Beech Nut makes a food (stage2 i think) called First Advantage that has more calories than regular jars. It's a little hard to find though.

OOPS! Not only did I not sign that last post, I didn't even log in!!
Can you tell I'm a little sleep deprived? :oops:

:lol: I did that just last night Megan! I think I actually have permissions set wrong b/c we shouldn't be able to post until we log in...will have to look into that.

He's now 8 months old, on Prilosec (3cc/day) and 24 kcal Isomil. I did ask about medicine to increase appetite, but the doc didn't think it would help. I'll ask the GI doc. Since we're feeding every 2-3 hours, at least attempte do, he's not willing to eat solids (maybe not hungry enough). We can try again later after he gains some weight. I'm afraid of trying something new these days because he's eating a bit better. Our Ped told us that his slow weight gain will effect his brain and physical development if we don't do something really quickly, such as fundo. He thinks it should've been done last month! Of course we want to avoid the procedure.

Shelley

Pardon the language but he's full of crap! It's true Shae's development fell a little behind for awhile but that has a lot to do with just how sick she was every day. She is fine now and Adrian will be too...kids are much more resilient than we give them credit for and there's no way that one poor weigh in warrants a surgery like the fundo. The fact is...he did gain weight, even though it wasn't as much as their 'charts' say he should have, he did gain...which means he got enough nutrition to make him grow.

ARGH! I get so angry!! He didn't think periactin would help!??!? Maybe he's right, but why in the world should you be expected to let them slice and dice the kid instead of giving the med a try first. UGH, I just get so angry at some doctors!

Good luck with your appointment...please let us know how it goes.

Unfortunately I don't feel we have much progress so far. The scope result showed Adrian has no erosion/inflammation. Biopsy showed he's allergic to milk, but it's on its way out. So doc suspected it's the breast milk since we switched to Isomil a week before scope was done. pH probing tells us that he refluxed only during meal time. He's givng us 2 more weeks. If he's not following the chart at any time within the coming 2 weeks, we should see him for surgery. If he's ok, doc'll still keep seeing Adrian every 2 weeks.

Well, Adrian already lost weight the day we went to doc. He tends to eat much less on outings. Doctor prescribed Reglan (0.6cc, 3x/day). We started yesterday and Adrian seems very hungry, but still uninterested in milk. We plan to decrease to 0.4cc as we're nervous about the side effect making him so hyper. GI doc siad Periactin is for kids at least over 1 year old. He never heard of zinc to increase appetite. I wonder if we should even try to get zinc at this point from our Ped office. A friend said it works on her baby (without reflux).

The GI doc warned us that our Ped doc will keep pushing for fundo, but GI doc is willing to review the weight every 2 weeks. I don't remember if I mentioned this, but our Ped refused to put NG tube after he was on for 10 days and we pulled it out for a few days. He thinks we should just do fundo beucase NG is temporary anyways. This leads me to ask how long can babies on NG tube.

Now, he's not eating well and weight is dropping (barely 400cc a day, and worse every day). Our plan is to give Reglan a try for a few more days and ask GI doc to insert NG tube to buy some time, that is,if he's willing.

Any suggestions? Anybody knows someone did a fundo? (Roni, you mentioned in your book of your friend's baby did fundo. How's the baby now?) All the sites I found are very negative and I'm aware of all the complications and really don't want to go that route. But if he keeps dropping weight, what other alternative is there?

We need a miracle here!

Oh my goodness Shelley...I think it's terrible how they keep holding the threat of this fundo over your head. You must be under so much pressure. Is it possible for you to get a second opinion from another doctor? Have you been able to try some of the calorie increasing supplements that some of the others have mentioned? Why not get a recipe from the dietician for a 27 cal formula?

I can't remember, is he a puker and does he have delayed gastric emptying?

I know tons of people whose kids have had fundos...many of them have had multiple fundos...which kind of answers the question about how they are doing know. I am not sure specifically which one you are asking about, but there is one child's story in my book who had the fundo and as far as I know is now doing well.

The trouble with NG tubes is that they are only temporary, they can damage the inside of the nose and throat if left in for long periods of time...although I don't know of any information that specifies what the amount of time actually is. The other problem is that I know of very few kids who had NG tubes for added weight gain and then went on to eat on their own and never have another problem...not saying it doesn't happen though. I just think once you start with the NG tube, you are starting a pattern of possible long term tube feedings. Having said that, I would go that route a hundred times over before doing a fundo.

Try visiting the PAGER website (www.reflux.org), I think if you contact them will put you in touch with some fundo families, not sure on that, but I think so. You might be able to find some success stories that way.

Please keep us posted.

thanks for your info and support, Roni.
Adrian has silent reflux. He only vomitted before Zantac was introduced and during NG tube feeding. GI doc will unlikely to do test for delayed gastric emptying. If Reglan works, then he has delayed gastric emptying. We really don't want him to be hospitalized for further tests either unless absolutely necessary. I just know of one successful fundo story so far. It took the baby 8 months of occupational therapy to learn how to eat before the G-tube was removed.
If Adrian's problem is mainly behavior, I don't know what fundo can accomplish!

Hi Shelley,
I've just finished reading all your doctor has been telling you and I'm so shocked! You have lots of other options! My daughter had an NG tube for 8 months and then switched to a GJ tube. All this time, we have never even heard our GI or ped. mention getting a fundo. (personally, I don't really think it's a pediatrician's place to do so when you're seeing a GI too.) I agree with Roni that maybe you should seek out a different pediatrician, one who will support your decisions about your child.
Two other quick things-Maeve had a milk scan done for emptying, and it was only about an hour or two (I forget exactly). I know there is a longer version, but maybe you could ask about that to avoid the hospital? Also, I know everyone is different, but when Maeve got her NG tube, we had to take a class at the hospital about how to insert it, etc. and we also had to have a nurse watch us re-insert it before we could leave. Is there any chance you or someone you know would be brave enough to do it? Then you don't have to wait for your pediatrician!
I hope I don't sound too anti-doctor, but Maeve has had her share of surgeries (4 so far, including open heart) and I've learned that you really have to be your child's advocate and not let a dr. tell you to do something that you don't feel is best for your child.

DO NOT LET THEM DO A FUNDO WITHOUT A GASTRIC EMPTYING STUDY FIRST!! Fundos are not as effective in kids with emptying problems. I don't understand their logic about using Reglan to diagnose an emptying problem... :? . If it doesn't work you don't know if it's because the drug just didn't help Adrian (it doesn't help everyone with DGE) or if he doesn't have DGE at all. If it does work you still don't know if it's because he actually has DGE or it's just helping his existing emptying to be faster than normal. I really, really, think you should seek new doctors...please consider it if it's possible at all. I totally understand your desire to keep him out of the hospital as much as you can, I've told them no, the last three times they wanted to admit Shae. Sometimes though, you need to answers to specific questions.

Adrian's PH monitor showed he has reflux 18% of time and only during feeding. He did a gastric emptying test and it was GOOD. So we think that his only real severe problem is food aversion. Last week he lost 6 oz, partly may due to a slight fever. So basically he did not gain any weight in one and half weeks. GI Specialist looked at his growth chart and said he should have done the surgery in April. We practically beg him to give us 2 more weeks. We talked to several other doctors and they all agree that surgery may be his only option if he keep loosing / not gaining his weight. GI doc mentioned it's possible to have just G-tube without Fundo, but it's up to the surgeon. We changed to the Enfamil Hypo-allergenic formula just to eliminate possibility of soy allergy. He was eating some chicken, but today he has diarrhea. We don't know if it's the milk or chicken that is to blame. GI doc will see Adrian again in 2 weeks and decide if surgey is next.

Anyone here with just G-tube? Doc said G-tube without Fundo will cause him to reflux badly. I greatly appreciate your input.

Shelley

Don't let them do a G-tube without a fundo! As much as I hate the fundo, a g-tube alone will make the reflux a lot worse, for sure!!! The doc is right!! It increases the pressure inside the stomach which obviously increasing the pressure on the LES. You are better off with a J-tube (what Shae has, it goes into the jejunum or second part of the small bowel) if you aren't doing a fundo. For us, it's been the best thing we did...it's not a great solution and not for everyone though.

I still don't think his weight is severe enough to warrant a fundo, and it will most likely only make his food aversion worse. I'm not a doctor though so I guess you have to trust them at some point.

Good luck and please keep us posted, I think of you guys often.

Doc said J-tube is not recommended because he may pull it out and then it's a very big deal to reinsert it back. Is that true? I wonder how easily can the tube be pulled out? What are the disadvantages of a J-tube that's not in a G-tube? Who would be a good candidate for J-tube/G-tube? Also Roni, can you please tell me why fundo wasn't appropriate for Shae? What was the surgeon's opinion? I guess just "failure to thrive" is justifiable for surgery/ tube feeding if he continues to loose weight? (even if everything else seems fine!) thanks for your support...it's really been a tough roller coaster ride.

It's no more difficult to reinsert a J-tube than a G-tube...perhaps he meant an NJ tube? Shae has had her J-tube for three years now and it's never come out (omg, I hope I didn't just jinx myself there).

The biggest disadvantage to the J-tube is that the bowel can not handle large volumes of food like the stomach. This means you have to feed smaller amounts of food over a longer period of time (continous feeds) instead of being able to pump large amounts over an hour or so and then unhook them (bolus feeds). Shae Lynne, for example, is fed for 20 continous hours a day where a child with a G-tube would be fed the same amount over night or in several broken up meals through out the day. It makes transitioning back to oral feeds difficult. Another disadvantage may be that some say the jejunostomy surgery can tend to fail, the skin in the jejunum area can degrade and make the site unusable...we have not had this problem thankfully, nor have I heard of anyone else who it happened to. The good thing about it is that it dramatically reduces the amount of vomiting and reflux episodes through out the day.

I'm not really sure what to tell you in terms of who would be a good candidate. I think that it's entirely up to the surgeon/GI that is working with your child and their personal opinions. Some believe strongly in the fundo and will do one on almost anyone...some are the polar opposite and adamantly refuse to do them. I think that whether a child is a good candidate for a J-tube depends on the surgeons faith in fundos. Most will do a fundo instead but I am thrilled that our GI and surgeon decided on the J-tube for Shae instead. There just really aren't any set guidelines I don't think.

I have to assume they decided Shae wasn't a good candidate b/c one of her scopes showed some DGE. I also believe personally she's not a good candidate just because of the amount of retching and gagging she does, the chance of her undoing it is higher. The other thing that I think the surgeon and GI took into account was my strong negative opinion about the fundo...not much point in trying to change my mind when they didn't think it was going to help either.

I think whether failure to thrive is justifiable for surgery or not should depend on the child's overall condition. If the child's health is truly in danger b/c of the FTT then perhaps, if a child is simply not growing as much as the charts say they should then no, I don't think it's justifiable at all.

I hope that helps some.

I got a little lost with all this. If your child only has an 18% reflux why are they still wanting to do surgery? I don't know how old your child is now, but it seems to me that OT might help. You can start food therapy farely early. I agree a second opinion is in order because this is your child and I don't think that is being respected by the ped. I can't really give you any advise because my dd is almost four and still won't eat consistantly. But at this point, with her, is't mostly behavioral with aversions. No amount of surgery will change that. I worry that if you go with the surgery you will still be at square one if it's mostly behavior with him too.

My DD is almost four and she is brighter then most of her friends of the same age. She spoke words at 9 m and was talking senteces by 1. Her brain is just fine and she didn't eat a piece of food for nearly 2 years. She was also off the charts for most of those years.

By the way, yes feeding a child before bed makes reflux worse. You asked that question a while back and it never got answered. It not only will keep him uncomfortable at the time. It might give him a sore throat by the next day.

Good luck with such a hard choice. I know your anguish, pray for the right answers and what ever is decided, know you are doing the best you can.

Sue
Savannah 1/12/01- still refluxing
Connor 7/2/03 - refluxed for 6 month and grew out of it when he started to sit up.

Hello friends, it's been a while since I last updated on Adrian. Back in July, his weight didn't improve and we didn't want to have him going through fundo. In desperation, we hoped changing the environment may help. He moved to Los Angels and stayed there for over 3 months. During this time, he was under cranial osteopathic treatments. According to the doctor, where he was forceped out during delivery has a direct link to appetite. For whatever the reason, he started to eat solids better with decreased formula. We stopped Prilosec since it didn't seem to help with occasional vomiting. Now he's back home without any medicine and it's still a roller coaster ride. He's now 14 months and weighs 16lb 8 oz. Hopefully surgery and g-tube won't have to be brought up. Thanks everyone for your support.

Shelly,
I think I know you, You are Anna's friend, Son Jeffery with reflux too. Well if you are the shelly I have talked with over the phone or not. I am glad you DD is doing better. Welcome back from S.D.

Sue
Savannah 1/12/01 refluxer
Connor 7/2/03 refluxed until 9 months.