I guess I'm more stressed and worried than I thought cause I just posted this in the wrong forum. So you may see it on the other.

My boys are 2 1/2 and two of them continue to have oral sensory issues and we just found out they have delayed gastric emptying. We are going to admit them into a childrens hospital to try ng feeding tubes at night and see if they can handle more amounts of pediasure that way.

I have so many questions. Does anyone have or did have their child on ng feeding tubes that have sensory issues? Was it difficult for them to continue to try and eat normal food? Was it uncomfortable for them? Did they continue to progress with their sensory therapy? And of course did anyone see a weight gain and has anyones child gone from delayed gastric emptying to normal?

We are just very worried about the whole thing.
Thank You,
Christine

mom to bbb born 30 weeks 2 days.

I read both of your posts. I don't know that I can be of any help. Does your boys have buttons? Are they getting buttons or are they being fed by a tube in their nose?

My son had a feeding button put in when he was 14 months old. He totally quit the bottle. Sometimes, he will eat baby food with rice cereal. IT has to be thick, otherwise, he chokes on thin liquids. If your children are getting feeding buttons, it's not as easy as you may have been lead to believe. It took Rylan's tube site MONTHS to heal. His issues with feeding are worse. He wouldn't poop on his own for 6 months, I had to do enema's once a week.

I don't want to scare you, this is what happend to us. Rylan has many issues, severe CP, PVL, epilepsy....so I know it's not the same in every case. Feeding him is very easy, but everything else is hard.

Again, I don't know if this is of any help or not. I just wanted to share my experience, things the dr's don't tell you.

Kelly

DS~7years
triplets~2years
January 25, 2005 at 33.4 weeks
DS,DD, and ^i^DS

thank you so much and that is what we are looking for - real life scenarios. Thanks again for sharing.

BIG QUESTION: Has anyone's doctors found the cause of the delayed gastric emtpying? Were there any metabolic tests run on your little ones?

We understand there is an operation option as well. Our doctor brought it up briefly but he didn't want to go into it yet and did mention the reglin but was not comforable with all the severe side effects.

It seems the more and more info we are getting tube feeding just leads to many more and different problems.

Thanks for any all all responses.
Christine

Wow - our logins are very similar!

My oldest hasn't been diagnosed with delayed gastric emptying but I can share what I know about feeding tubes!

We went the "operation route" with the Mickey G-tube ("button"). Lorne *completely* quit eating about five months and we felt we had no other option. The NG tube was briefly discussed (and this was when he was five months old) but we "opted" for the more "permanent" G-tube because we knew we'd need it for a while as we worked with him on oral sensativity issues, etc. and I couldn't imagine myself placing the tube, risk of aspiration, etc.

We are SO happy with our decision to get his G-tube. Now, we were led to believe that he would get the G-tube (his problem was aversion b/c of reflux so he had a fundoplication done at the same time), the reflux would stop (b/c of the fundo) he would quickly learn that eating no longer HURT and would be eating again by mouth... of course THAT didn't happen! He is almost two years post surgery and still takes most of his feeds by tube (but again - those two years were between 5 months - 2 1/2 , no starting out with a 2 1/2 year old) We are SO hopeful that he will "get it" soon and he is making HUGE progress lately - we are really, really hopeful that maybe by his third birthday in September that he'll get it out.

The tube itself hasn't really been much of a problem - his healed well, no infections but we have had to have some scar tissue "burned" off a few times (done in the office). His little brothers and I have each pulled it out a few times each but I'm a pro now at holding him down and sticking it back in. Lorne was SO small and sick - his G-tube has helped him become BIG (by far our biggest in height and weight) and strong and healthy. He had major lung issues and I know his growth is universal and has helped his lungs grown and heal as well.

The ol' "relearning to eat" has taken MUCH longer (and been WAY more frustrating!!!) than we anticipated - but, like I said, we really KNOW we made the right decision for HIM and OUR family (which isn't necessarily the right decision for YOUR family, of course). As you said "getting the feeding tube just leads to more, different problems" which may be true but for US - his immediate, physical health was most important (and, like I said, we had his sick lungs to consider).

I'd be very happy to talk off-line - my e-mail is mctriplet_mommy@yahoo.com if you have any questions you think I could help with! I'd also suggest the Shareyourstory.org site which is run through March of Dimes (link below) - I know a few girls there who have kids with diagnosed "delayed gastric emptying."

Kara, mom to
Lorne, Isaac and Sullivan
born at 23 and 26 weeks September/October 2004



http://themctriplets.blogspot.com
http://www.marchofdimes.com/share

I also wanted to ad, that I don't regret getting Rylan's g-tube either. He had a nissen fundoplication 6 months prior to him getting the g-tube. In my opinion, he really stopped eating when he got the nissen. AND he still has reflux, and can spit up...but not nearly as much as he did. I've had nurses tell me that when they get the nissen, many kids just don't care to eat any longer. Rylan was also not gaining weight, was dehydrated, and I was having a hard time getting him to take his meds...which he NEEDS. I am glad that he now has the g-tube and is gaining weight, I know he is getting his medication, and he doesn't have to fight me on that. YES, I wish he could eat the "normal" way, but in our case, it's just one of those issues.

We've had the gastric emptying test, upper GI, swallow study, which all were "fine". But I know he isn't fine, and has issues with all of these.

If your dr spoke briefly about the nissen for reflux, it was a small surgery. We had to go to the PICU for a week, but my son doesn't tolorate anestesia, but he healed really quickly from it.

Kelly

DS~7years
triplets~2years
January 25, 2005 at 33.4 weeks
DS,DD, and ^i^DS

One of my triplet grandsons (born at 30 weeks) was on an ng feeding tube until he was 19-1/2 months old. It was not uncomfortable for him except when it was placed or changed (about every two weeks). The nurses in NICU taught my daughter how to do this and she was able to do it well and quickly, as needed. We think my grandson had some mild sensory issues (he's 3 now), but his main problem was that he shut down and wouldn't eat/drink anything, probably due to esophagitis as a result of his intubation in the NICU. An ng tube doesn't make it hard to eat/drink if the child wants to. In my grandson's case, it kept him alive and thriving until, with the feeding therapist's help, he finally decided to eat. Starting with an ng tube at 2-1/2, though, could be a different story since they probably will be fearful and fight the placement of the tube. An infant doesn't have much of a gag reflex and the tube goes in much easier.

I have a little experience across the board on this issue. I currently have two of mine that have a g-tube and nissen. And both suffer from oral sensory issues. They had NG tube from birth until about 3 months old. All of my kiddos have been on reglan at one time or another with no side effects. My DS is currently on it and has been for the last 8 months or so.

So here is my thinking/opinion. If your DS has sensory issue already putting a NG tube in every few weeks (if it stays in for that long at this age)is only going to help with the weight, but might worsen the sensory issue. If you don't want the surgery I would try the reglan. It kills me everytime one of my kids have to have a surgery. But again if he has oral issue's getting the meds in might be difficult.

In the long run a g-tube might be the best route. Nothing has to go in his mouth if he doesn't want it to and you can work at his pace. My kids just turned three in Nov. and we have been given the go ahead to get rid of DD's g-tube, because she know finally will drink pedisure from a sippy cup.

Are your two DS's getting OT-oral therapy? This is what has helped my DD a TON! If you are getting OT talk to your son's therapist as well as get their opinion how he might handle a NG tube.

There is a few weeks of heal time with a g-tube it is not an instant fix. And we also had several times that the mickey button was yanked out. More then I would like to count. But it is very easy to put back in.

Also you need to watch feedings with pedisure. As it gives the kids a ton of nutrition it fills them up. We had to really cut back on the pedisure feeds in order for our DD to be hungry and eat "regular" food. We got to the point that she didn't get any feeds during the day and ate what she could, then at night based on how we felt she ate we would give her a feeding while she was sleeping. This also helped in that being mobile she didn't want to sit still while getting a feeding from the pump. And chasing a toddler to give a few CC's every few minutes was driving everyone insane! My DS has other "issues" that he is strictly feed via the g-tube.

HTH,

Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

www.caringbridge.org/visit/connorferris

http://lilypie.com>

Well the ng tubes have been in for a week now. It was a very scary week for us all at the hospital and very trying. The boys have had every test run that the GI, genetics and ped. doctors know of and still we have no cause for their delayed gastric emptying. This has been the most frustrating of all. My husband and I are concerned that although the boys will probably have the ng tube in for several months for nutrition and weight gain we are not solving the problem just temporarily patching it. I mean once they are off the tubes and if they still cannot digest normals amounts of food they will probably stop gaining weight again, right?

We do have a new feeding/speech therapist who has many years experience with ng and g tubes. Because both our boys have poor oral motor and sensory issues she is not please that we had to go this route but said we will continue to work on the sensory issues it just may take more time to get them through it.

The tubes have been in place for a week now and one of our boys has taken fine to it besides some coughing and is keeping the night feedings down. Our other poor baby has had the toughest time of all. He was been unable to tolerate the night feedings 3 out of the 4 days we were in the hospital and also at home consistently. The doctors answer was to reduce the amount so he's getting about 1/2 of what his brother is and we will try and work him up to more.

The whole process has been very emotional and we have had the tube already come out twice. I feel for all of you who have had to go through this and appreciate you sharing your opinions and successes. We can only hope our boys continue to eat some food orally during the day and that we somehow find a cause and cure.
Your families are in our thoughts and prayers.
Christine
BBB born 30 weeks 2 days.

Christine, I am so sorry you are having to go through this. I remember so well how difficult this was for our family. To this day, we love to watch my grandson who was on the ng tube for 19+ months enjoy eating. It was such a long road, but thankfully, he won't remember it and isn't suffering any long-term effects. I will pray the same outcome for your boys and that the doctors uncover the root of the problem soon so you can move forward with appropriate treatment.

Sherry