2nd Opinion and huge decisions to make

[Anonymous]

We had Noah’s appt today with another GI in a different city. Since our current GI had pretty much dismissed us after running a few tests and determining that Noah soley needed help from a feeding clinic and not a GI, I decided to go get a 2nd opinion. We drove to Cincinnati Childrens Hosp. with all of our records and reports from the OT, Ped and GI here in Columbus. After looking over all of his records and seeing that his scope and upper gi were normal he moved on to other issues. Motility was mentioned and he was more than willing to do a stomach emptying test (no one else here would do one). He also thought that since Noah was a bit slow in gross motor skills (not pulling up yet and didnt sit up well until 9 months), plus his delayed swallow, he thought Noah should have a head CT to make sure everything looks good neurologically. He also thought it wouldnt hurt just to consult with a neurologist. He thinks Noah is fine, but it doesnt hurt to rule out neurological issues. Again, these are things that my doc here wouldnt do.

He said that he’s seen many babies who for one reason or another just didnt want to eat. He thinks maybe Noah had difficulty eating as a newborn, and then it just developed into more of a behavioral issue over time. What he said next really shocked me. He said that even though Noah is growing fairly well, it is still a struggle to get him to eat normally. And obviously he doesnt associate eating as a pleasurable experience. Therefore, in his opinion, we need to take away the pressure and force feeding and instead make it a learning and pleasurable time by seperating nutrition from oral intake. He said putting in a g-tube would be the best way to turn around his eating issues by letting him eat whatever he wants orally, then finishing him up through the tube when he doesnt take in enough on his own. This way we dont pressure him or force him to eat anymore, and eventually with help from a feeding team, he will improve.

My husband and were shocked to say the least. I only thought feeding tube (g-tubes) were for kids who were FTT or who wouldnt eat at all. Noah will eat some, and he isnt FTT yet, so I was just shocked that this was his recommendation. I’m all for having a CT and doing an emptying study, but a g-tube right now wasnt in my plans. I understand what he’s saying, but I’m just not ready to go that route yet. But then on the other hand, the more I feed him when he doesnt want to be fed, the more issues I’m probably going to cause in the long run. I feel like I’m between a rock and a hard place and I dont know what to do.

[Anonymous]

Lisa ~ These are very difficult decisions. Frankly, I wouldn’t do any of it – tests or feeding tube. I think he can still improve on his own. We had all of the same issues that you are describing and have seen a complete turnaround. Obviously, should he start to not grow or becomes FTT then maybe these things should be considered. That’s probably not what you want to hear but I’m just giving my opinion. I would give it some more time. Good luck, I know just how hard it is to make these kind of decisions. It’s really hard to know what the right one is…

[Anonymous]

I would consider it. It is probably a short term thing. If you lay off Noah for a few weeks, a month or so, that might be all it takes to turn this whole thing around. It might be worth it. I really get the sense he was concerned with Noah’s happiness, which is very rare! Most of these Dr.’s look at them medically and that’s it. There is so much more to our babies than medical and he seemed to get that.

[Anonymous]

I agree with Ann Marie. His recommendations also sound similar to what
Thais’ ped is doing in Spain (and until he got sick recently, I believe
it was starting to help).

[Anonymous]

My post sounded kind of harsh so I just wanted to add that I thought that the doctor does sound pretty good. He understands that you are going through issues and at least is offering you some options. I would be pretty happy about that. That’s one of the things that our Ped GI always had going for him. debit342006-2-15 16:26:5

[Anonymous]

Stacey, you didn’t sound harsh! You sound like a mom who doesn’t want to see children go through more than they have to!

All of these decisions are hard when it comes to our children. We just want to do the right thing and don’t always know what that is……

[Anonymous]

Definitely – it’s so tough to know…

[Anonymous]

this is never easy, is it. You wanted a 2nd opinion and it sounds like you got it. I have struggled with finding the balance between what I think is/could be wrong (since I deal with him 24/7) and what the medical community thinks could be wrong. I have struggled with wanting everythign on my terms, done my way. I know you just wanted an emptying scan and walked out there with a possible tube and ct scan. IT always makes me uncomfortable when they through out possibilities I hadn’t considered. At some point, you have to trust the doctor, weigh benefit and risk, and make a decision you can be comfortable with. When Matthew saw Gi last, they wanted to scope him and do a probe. I just wasn’t ready for that. It doesn’t mean they are right or I was right. You are in a similar spot. You asked for help, he is offering what HE thinks is best. You have to decide if you trust him and if you think your situation warrants it. If what you are doing right now isn’t working……..maybe trying something totally different is what you need.

I think he has a great point on the eating. Don’t know about the tube but definitely taking the pressure off with eating is a good thing.

Just remember this isn’t a pass/fail issue. there isn’t a right or wrong decision. You can say no now and decide to do it later.

[Anonymous]

Donna ~ That was very well put and exactly how I’ve felt when faced with these sorts of issues.

[Anonymous]

Lisa,

I can completely understand what you’re going through in reading your post, mainly because we are going through almost the exact same thing. I believe I mentioned a while back that at the beginning of January, our ped GI (who has since dismissed us) felt that Hailey was heading towards tube feeding. At the time I refused to accept that since she had not had what I considered to be a thorough examination to find out the source of her problem. I felt that without doing that we were just treating the symptoms and not the underlying cause.

I can imagine that you were floored after hearing what this doc had to say. I find it so puzzling that two doctors, both of whom supposedly had equivalent education and training can come to completely opposite opinions… one says do nothing, the other says do everything. How are we supposed to know who’s right?

Since the time when our GI doc told us that we were probably looking at a tube, I’ve done quite a bit of research on the topic. The majority of it has been internet-search based. Unfortunately I have come up with mixed results. Some readings suggest that tube feeding can reduce the stress of feeding and therefore allow the child to take in what they’re comfortable with. An exerpt from a book which I really respect on feeding (Child of mine, feeding your child with love and good sense- by Ellyn Satter) has a chapter on tube feeding. She quotes some people who feel that tube feeding can be the only way to re-establish the feeding relationship. However, there seems to be other research that suggests that tube feeding can make it more difficult to resume oral feedings in a child who already doesn’t want to eat. There were several reasons cited: 1. It can cause reflux and therefore worsen the feeding aversion. 2. It allows the child the possibility to stop oral feeds and potentially not experience appropriate hunger cues. 3. If an NG tube, it can worsen the aversion in an older child, because they can’t differentiate different areas of the face and may associate the discomfort all feeds. 4. For children who have trouble with swallowing, the placement of an NG can make swallowing and feeding worse because the brain has to relearn how to swallow with the presence of a new stimulus in the back of the throat. 5. If tube fed for a long time, the child can begin to consider the G-tube to be a part of them that they don’t want to get rid of. Let me know if you want more info on this and I can try to give you some more direct quotes or some links. Basically after everything I’ve read, I came to the conclusion that there are no clear answers- some people feel it’s the only way to go, others think it’s better to try to continue with oral feeds.

I know that there are several people on this site who have successfully tube fed and found it to improve oral feeds- Christian’s mom being one of them. Other children who have not done well with solids or bottle seem to have spontaneously one day turned around.

In my case, I personally have decided that I do not want to go the route of tube feeding unless Hailey’s weight and thriving necessitates it. Also, I would want other relevant investigations done before accepting this as the answer. In your case, of course I believe that only you can make this decision, because ultimately it is only you that lives with your child each day, and you that has to live with the consequences of your decision. But if I were you, I would not do everything at once. I would first do the gastric emptying scan, and see what the results show from that. It might be the answer you’re looking with some treatment options for Noah. I personally don’t know that the ct scan is necessary since he seems to be developing on track, maybe you could ask your ped for his opinion on that one. Also, maybe you could ask your feeding team for their opinion. Do they feel that Noah can improve with therapy alone? You might also want to ask them from their personal experience, if they’ve found that tube feeding helps or hinders improvement in terms of oral feeding.

Good luck in your decision. Please keep us posted. If you ever want to e-mail me, my address is [email protected]

[Anonymous]

i’m sorry—-but i think this is one of the most bizarre things i have seen suggested by a doctor on this board. sylvia was failure to thrive, had major reflux, and went throught times where she spit out much of her food. a g-tube was hanging over her head twice. we did everything we could to put weight on her to keep from getting one. we are in the same situation with one of my celiac twins right now. if we can’t get her eating and putting on some weight, she could end up with a feeding tube at 14 years old. this is only because her weight is incredibly low. your baby is only 10 months old and he is a healthy weight. most babies have some weird quirk or another—-your son’s happens to be that he is difficult to feed—-but you ARE getting him fed. he is only 10 months old—-give him some time.

[Anonymous]

I think that you have to do what is best. I was so frustrated when the first PED GI we saw told us that we needed to consider a tube in November. I said no way in heck and did some research and got a second opinion. The second PED GI did the probe and endoscopy and found no major issues reflux wise, but wanted to treat the symptoms even though the tests didn’t prove anything.

After 3 mos of not growing (October-Dec) we went the NG tube route – NOT what I wanted to do as Christian has such a feeding/oral aversion. The PED GI said that it was the least invasive route and wanted to make sure he could gain if given the proper formula. For the 8 days that he had the NG tube he gained 10oz. However, he took NOTHING by mouth and got to the point that his aversion helped him cough up the tube (removing what he didn’t want there).

We removed the NG and went back to bottles – same nasty behavior – arching, turning away, screaming when he saw it. We decided that the best route for him and our sanity was the G-tube. My decision was partly made to teach him that eating can be fun and there is a whole world of good flavors out there. He was hating the bottle and refusing solids – all associated with that nasty memory of what eating was like.

I don’t yet consider our situation a success as it has only been 1 1/2 months. But he is now willingly eating 3 meals of solids (6-8oz) per day – loving all the flavors (still working on the textures). He takes 3 bottles per day (4-5oz ea) and gets a continual feed overnight for 8 hours.

I don’t have to worry about his hydration as he gets plenty through the night and we get to work on the fun aspects of eating and I am hoping that he will relearn how to eat or the painful memory will eventually go away.

If you have questions regarding the G-tube or our situation more directly (I know that you are hesitating with this option). I can try to help.

Good luck with your decision. It is definately a difficult one to make.

[Anonymous]

I would hold on on the thought of having a tude, and do the GES first, if Noah does have DGE, motility drug will help his eating. A recent increase in reglan has help Brian’s eating. Several people on this site has try appetite stimulant with success, maybe you can ask gi about it.

I would see a ped neurologist before doing the CT scan. Brian is developmental delay, he had brain MRI done which is normal, one of his blood test which relate to muscle came out elevated, we just had the test repeated. The ped neurologist said even if he has congenital muscle disease, there is no med or other treatment, he will improve by doing more exercise.

[Anonymous]

hi there my sons name is noah as well and he is one next week. my boy cant seem to eat fruits or veges and most other food still hurt him. he is a good size being on the 90th percentile cos he has my breast milk and has been eating baby yogerts and baby rice. (even so still effects him) the most noah will eat in a sitting is prob 2tablespoons of food. he freqently views food as an enemy but ive seent he dietition and as he his growing ok there is nothing else i can do. ive talked to many people about how little he eats and how worried i am and they have just said that he will hopefully grow out of it. i dont know what weight your boy is but hopefully things arnt bad enough to need the tube. i have found that he eats what he needs to and i try and give new things and vary it and finger food like rice bubbles without milk just to keep him interested. dont know if any of this helps

[Anonymous]

Lisa

(Sorry i was not close to a computer for a long time!). I understand what you are going through… it is so difficult to make a decision but i think that if the time ever comes to get a tube in, you will know if it is right or not.

First, i woud demand the tests… this is what we did for Matthew and everything turned out to be normal (IE NO ISSUES THAT ANYBODY COULD SEE).

Second, if your baby is healthy and growing at a respectable rate, and you do not think that he hates to eat more and more, then you have to keep doing what you think it is working, and as i said, you will know — for us it was clear — Matthew started to look thin, his eyes were sinking, he was skinny, and was sleeping very little ( i found out that whenever MAtthew does not get enough food, he is very RESTLESS, which may be a way of telling me he needs more and i give him some through the tube and his next nap is great!! so he def needs the food).

As Karen said, my ped has very similar opinions to the people you have seen. I know and have read a lot about tube feeding but as i said, you will know in your heart if you need it or not. He has told me stories about patients not eating — he told me the other day that he had one patient (now married!) who did not eat until he was 8 years old!! His parents were not allowed to force him to eat, so he only had dinner every day and no other meals, and then one day, he had breakfast, snack, lunch and dinner and he has had them everyday since then. He has told me stories of babies who need only a couple of weeks on tube feeding… he said every baby is different and babies refuse ot eat for different reasons (in Matthew’s case, he thinks he gets hungry but cannot understand how to behave when that happens, therefore, he gets really agitated when he does not eat, but he does not know he has to eat to solve that…. and he needs to learn action-reaction.

I know there is a lot about tube feeding adn there is a lot about why it could be bad, and i know that Lori said a few things on her post, but i have discussed them at length with my ped and he says that when you manage the tube OK then you can eliminate most of the bad stuff…. yes, it does produce more reflux and really, at the beginning we thought it was reflux, but what happens is that if your baby is refluxing, then the tube may move with the refluxing (if NG TUBE) and then baby ends up throwing up (yes, it happens to matthew but if you are on the right meds then it does not hurt them); no, they do learrn hunger cues, but you need to work with your doctor as to how to provide food… at the beginning, maybe baby needs weight and they will put everything through tube but once you are comfortable with baby’s health, you start feeding orally and work from there; Matthew hated his tube and was grabbing it and pulling it — now, he does not even know it is there — babies are amazing at adapting. I put it in myself when it is out and he is OK wiht it, screams for 2 minutes, but then just smiles.

I don’t mean to say that the tube is the answer; but it has helped us. I also think that you will know if you need it and when. If your baby gets to that stage, and i pray to god you do not, then you will do what is best for your baby and if the tube is the answer, you will know.

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