Has anyone had a pyloraplasty done for their child's DGE? With or without a fundo?

My husband and I dont want to say okay to surgery on our son of course--but what are your opinions on how to decide when it is needed?

The UCLA doc is recommending surgery because Gavin's delay in emptying is severe. Sometimes I look at our son and think the doc is nuts because he isn't that bad. But when he isn't doing so well, I contemplate the fact that it *might* make him better. Because it is just a might, I wonder how sick does he have to be in my mind to make it worth it even if we deal with things like dumping after the surgery.

When I think about what things would make it a go--I think that he would have to drop off the weight chart again because of the low intake or because he stops holding everything in. At this point he is not a vomiter--which is surprising with how bad his delay is. I really dont get how he swallows everything that comes up to his mouth but he does. He tries to make himself vomit a lot but nothing comes out when he does. The only thing about him sticking his fingers in his throat is that he may just be trying to touch his sore gums where new molars are coming in. I think it is weird though that he retches and not vomits when he does that.

He utilizes the full 24 hours to get his intake and is only in the 7th percentile--BUT he is holding his own there now (at least last we checked) and when I say holding his own, he has remained there for a month--very early to say he is fine. It's certainly a good start though. He wakes up a lot at night crying. It's as if he wants to always have a full tummy--I think he gets used to the feeling of food in his tummy all the time so when it finally exits in the middle of the night he wants to fill it again--but then he cries after when he goes back to sleep because it keeps coming up. Makes for one tired mommy.

I guess my main concern at this point if we do surgery is dumping and how long it would last and if it would cause other things like hypoglycemia long term. Having dumping definitely would increase his intake but not his weight. So doing the surgery to help him eat more so he can grow well again sounds like not a sound reason. GRRR

My main concern for NOT doing it is that he only has room for jars of puree or formula not the recommended amount for both. Even when he has only formula all day he gets the lowest amount needed for his age. When you add food, he gets even less formula usually. The other thing is that he will only eat the stage 2 purees unless it is a stage 3 without lumps. He will eat crackers and dry cereal but no regular table food. He just refuses to progress. He is going to be one and is still eating like a 6 month old that doesn't get enough formula. At some point something has got to give.

What do you all think?


l

Carla, I do understand your concerns and they are very valid. As for the surgery itself, each child responds differently to it. Justin had his procedure done with his second fundo. He experienced some dumping the first couple of weeks but then it did resolve itself. I do know some kids that never had a dumping problem and than others that dump all the time.

Again I think that it depends on the child and how the procedure works for them. At this point I dont think that the surgery was a success for Justin because he still has severe delays in his stomach and small intestine.

I was wondering if your doc has talked about trying any other motiltiy drugs? Justin has been on them all and nothing worked for him. I do know that zelnorm is being used now in younger children and there has been some success with it. I know it is just a thought. I do wish you luck with the outcome of it all.


Melanie

:dizzy: Your concerns are so valid. I could only tell you the same things you have already said, I agree with you entirely. I do think that getting Es emptying corrected was totally worth it. But, if he seems pretty healthy to you, the problems you may have post op may not be worth it. But, if they are temporary would they be?

Ugh, my head is spinning with you Carla. It is so tough, we went through the same thing, you just have to fill your head with knowledge, pray about it, and then do what your mommy instincts tell you. And, keep talking to us, we will hash this out with you anytime, I wish I could be more help. But, so many kids have so many different problems with these surgeries. Elis has gone so well so far...

The other thing is that he will only eat the stage 2 purees unless it is a stage 3 without lumps. He will eat crackers and dry cereal but no regular table food. He just refuses to progress. He is going to be one and is still eating like a 6 month old that doesn't get enough formula. At some point something has got to give.

Carla,

I don't have an experience with surgical corrections, but you just described Catherine's diet perfectly. She's almost 15 months.

Hi-
We go to UCLA as well and they have been wanting to do surgery on Sarah as well. Her emtying isn't as bad. She empties 35% at 90 minutes. We have put it off for now and are trying to get cisapride to see if that will help her. Sarah is holding on to the 3rd percentile for now. She also can't seem to handle solids and formula together. We went for a second opinion at LA childrens and that doctor said he would only do surgery if the empting was in the single digits. SO we don't know what to do. I guess for now we are putting it off.

Karie,
I was hoping you would respond, I was thinking about you and Sarah when Dr Ament suggested surgery. Does Sarah vomit frequently or just not take in enough? It seems as if Gavin regulates himself so that he doesn't puke. I personally am most concerned about Gavin's growth (or lack thereof) but I just know that with a pyloraplasty there is a considerable risk for dumping syndrome. If it is temporary (like a few weeks) then resolves itself, that may be okay--but if it lasts for a long period of time, or comes and goes like it seems to occur for my daughter and my friend's son, he would still not grow well. It would be trading one problem for another. If I knew there would be no dumping or if I knew with certainty that it would only be temporary then he would eat and grow well I would consider it more seriously. But at the moment, I am doing what you are--putting it off! Our ped comes into the office today after being off for a week, I am curious what she will think of Dr Ament's recommendations because she was the one that sent us there.

Oh and Lesley--that's the thing-- one of my biggest frustrations wouldn't be helped by surgery! The only way I can see it helping is if the surgery suddenly makes him have a healthy appetite maybe he will want the food. But I dont know! How is Catherine's weight on the chart and her growth pattern?

Carla, I was wondering if the docs have ever spoken to you about using peractin to help stimulate appetite. Justin took this med for a while and it really did help him eat better. I also know a few other kids that have used it and are still using it to help with their appetites. It is just a thought.


Melanie

Sarah doesn't vomit she just doesn't eat enough. She seems to always stop at 3 oz then I have to give her alittle break and then try to get her to take more. Sometimes she will and sometimes she won't. She is never hungry- never asks for food. The only time I have seen her hungry was when she was having a growth spurt. I think she just feels full early into feeding and stays feeling full. The erythromycin doesn't work for us any more. Maybe we will try reglan agin- it didn't work when we tried it a long time ago. We are also trying to get cisapride which is a emptying drug. Sarah's height is starting to be affected now so I don't know what to do. I guess we will try the cisapride first and go from there. Do they grow out of this? Is it like reflux where most kids grow out of it?

Melanie, he is on Periactin already and it helps. I found that he drinks a bit more when he is on it, but still not enough. It also makes him sleep all night too, which I love! He is always congested with big purple bags under his eyes so even if it didn't do anything for his appetite, I would still use it for the antihistamine purposes. He takes that and Zyrtec for that and STILL looks awful, but better.


Karie, I *think* they can outgrow it. I think it depends on why they have DGE. If it is an immature digestive system--weak contracting muscles- I would think they can get stronger as they get older. If there is something wrong with the pyloris, then I would think that would not improve with age, but rather something that would have to be corrected. I think it is interesting that Gavin takes in a bit more than Sarah (about 5 oz at a time) and is a little higher on the chart than her but his percentage is lower than hers. He is only one month older than her. Is she breastfed or on formula? If formula, which one? Does she eat solid food?

His height was affected between 6-9 months, but since starting neocate he has been drinking more and even though his weight is slowly trailing along, his height has picked back up. Not where it was, but better.

I pump breastmilk for her and give it by bottle( she wouldn't take my breast) I fortify it to 24 cals/oz with polycose and oil. She doesn't really eat solids. She will not take anything off a spoon but will put cerely sticks and carrot sticks in her mouth so I put the purees on that. I wonder if they can do an ultrasound to look at the pyloris.
Does he stop at the same point with each feed? Sarah always stops at 3 oz then needs a break - about 20 minutes before she will take more.

Hi Karie,
Gavin is actually scheduled to have an ultrasound on Friday. Our ped just ordered it today to look at his pyloris. We decided if there is an abnormality with the pyloris we will do the surgery. If the pyloris is normal, we will wait and see if he outgrows it as long as he continues to grow, because it would be due to a muscle tone issue. If he stops growing at any point, we would do it anyway. Right now he is growing though!

He typically takes 4-5 oz, then waits 4-5 hours before having more. He will eat pureres but not at the same time as formula and nothing of normal food consistency (like we eat).

What is polycose? Gavin wouldn't drink the bottle with oil in it.

Maybe I should ask for an ultrasound. It is so hard to get her to take more than 3 oz at a time. Polycose is a form of glucose. It comes in a liquid and a powder. My husband gets it from the hospital. I sometimes put it in her solids as well. Sarah can only handle meltables and the thin purees. I am not sure how much see actually eats because she will only take them by "accident" when they happen to be on the celery or carrot stick that she puts in her mouth.

okay Karie you just cleared up my confusion over Gavin's choices of food! I never understood why he only ate veggie puffs, cheerios/kix and then only very thin purees---duh! Meltables and thin purees go through probably at a similar pace of formula. I dont know why I never clued in to this before, this is a diet similar to one that a child has after a fundo--goes through easily.

So now I really dont hold out much hope that he will start eating table food. He has eaten spaghetti once and a chunk of canteloupe once--he ate a whole banana a a few times then never ate any of them again. Turns his nose up like he never devoured it the first time he had it. Must not have liked how long it took to go through! At this rate of speed in emptying, our ped doesn't think he wll ever move on to real food.

The only thing I am a bit pessimistic about is that pyloric stenosis seems to be only a baby thing in the first few months of life. I kow there are other variances from that or they wouldnt do the ultrasound, but I found nothing on the internet through a google search about pyloraplasties except for stories on websites. Everything about pyloric stenosis came up with the typical presentation. I am thinking that most kids with DGE who have pyloraplasties are ones with tonal issues and perhaps that's why they experience dumping. What a sucky place to be in--a kid who doesn;t eat food because it doesnt go through or a kid who eats so much because it dumps through--sorry I am being a bit of a downer this morning! I know dumping could resolve--I just wish something in my kid's medical lives could be cut and dry. It is so frustrating!

I'm a bit late to read this but IMO I wouldn't be doing anything unless there is a physical abnormality causing the DGE that a pylorotomy could fix. I really don't see the point to it if they don't know whether or not the pyloris is the true cause. If they can see that the pyloris is abnormally tight, I can see where they would want to correct it but not just a trial and error approach when it comes to surgery.

The amount Gavin is eating and even his eating habits are identical to how Maggie was at his age. Same as Sarah too Karie.
We don't know for sure if Mag has DGE but she has had a pylorotomy, we know the pyloris no longer closes completely and SHE STILL had/has the same eating issues.

I know this is so hard on you and I feel for you. Making a decision like this where it's not cut and dry is the hardest. I know you will ultimately make the right choice and I wish you the best of luck.

Lena, wasn't her pyloromyotomy considered incomplete? I dont know if it was you I read that on or someone else. After speaking to our doc, typically surgery for pyloric stenosis is cut and dry without problems and it is considered a simple surgery. When they do a pyloraplasty for DGE caused by tonal issues, that is when more problems arise such as creating new problems or it not being effective in improving the emptying time without a dumping result. If the stomach is low in muscle tone, its contractions are weak so it doesnt move food through at a normal rate. Cutting the pyloris is not going to take away the fact that the stomach contractions are weak--they will still be weak. To me it sounds like a less than perfect way to correct the problem that sets up a child for dumping syndrome.

Of course if the DGE is such a problem that their percentage of delay is in the single digits (1-9 percent) like the doc at LA Childrens agreed with, then I would think dumping is a much better outcome when the alternative is food not moving through at all. But that isn't the case for us, Gavin is drinking enough formula to get by and is not suffering ill effects from his reflux that is likely caused by his emptying problem.

Our ped and I are in complete agreement that if there is an abnormalty in his pyloris we will do the surgery. If the pyloris is normal, we will try erythromycin again and explore other meds. As long as he keeps growing, we will continue doing what we are doing knowing full well he may be on formula still when he is 2 because food does not move through well. We have decided that we are okay with that and will re-evaluate it between age 2 and 3. However, if he stops eating and growing anytime between now and then, we will reconsider. For now he is growing so we'll wait if his pyloris is normal.

His ultrasound is tomorrow morning.

That sounds really good to me Carla. I think we will end up doing the same thing. Dr Ament mentioned to us awhile back something that looks at the stomach contractions- like and EKG for the stomach. We haven't done it yet but maybe we will do it soon. You could ask him about it. I agree if the pyloris looks normal and the stomach isn;t contracting well then putting off the surgery and hoping they will out grow it sounds good to me. We are going to see him in 1-2 weeks so I will ask him about the stomach EKG test. If we are able to get cisapride I will let you know.

Mag's pylorotomy was complete. Her pyloric stenosis was far from normal too.

Let us know what the outcome of the U/S is.

Thanks for letting me know about that Karie.

Lena, it sounds like that a child can have pyloric stenosis corrected well but still have other things that exist. Dr Ament had mentioned that his DGE could be the only cause of his reflux, or that he can have a problem with DGE and a problem with his LES muscle at the same time. Many kids with pyloric stenosis go on to live without any other problems where obviously some kids have other things existing with it that are still a problem afterward. Looking at our history, I would think that Gavin would still have problems--I think having his delay in emptying corrected *could* minimize his issues, but I dont think this would be a quick fix for him.