Gastrostomy? A few questions, please!

[hazeyjane]

So ds's paed and the feeding SALT are recommending a gastrostomy tube for ds (20 months) for a time, because he is suffering recurring chest infections due to aspiration. They have said that it probably wouldn't be for another 6 months. His SALT is hoping that we can work on his oro-motor skills, and try and improve his muscle tone within this time, and avoid having a tube. At first the recommendation was for him to have the majority of nutrition through the tube, but as his SALT pointed out, this would still leave him at risk from aspiration, therefore she thinks that if they do it, it would be better to have all his nutrition directly into his stomach. His paed also needs to arrange a 24 hr ph probe, as he suffers from reflux, so I guess if he aspirates when he refluxes, then the tube wouldn't help that. Unfortunately we can't see his paed until the middle of May, and I have some questions buzzing around in my head - lots of you have been very helpful before wrt to ds and his chest/feeding stuff, so i wondered if any of you might be able to help!

So my questions are

1. If he is aspirating refluxed acid - would they have to do surgery (fundoplication?), or is there an alternative?

2. If he can't have any food orally, what the hell do you do if they want to eat something? Eg at a friends house this morning, ds sees her dd having a biscuit, would I have to stop him having biscuit (I know that this seems so trivial, but socialising with ds is pretty important to both of us, also i have 2 dds who eat for Britain, I can imagine ds having a meltdown if denied food!)

3. Would they have to do several videofluorocopies to work out if his swallow is still poor, when they wanted to remove the tube?

4. will it be more difficult for his swallow to improve and his oro motor skills to get better, if he isn't eating.

Right that is the start, there are other questions, but those are the ones that popped into my head-thankyou.

It seems crazy that if they have decided his swallow is unsafe and he is aspirating that it is being left 6 months. Is there any reason why they are not trying ng feeding first to see if it helps to resolve some of the chest infections? If all his feeds go into his stomach he could still aspirate saliva or refluxed feed if a nissens is not done but they are not always successful, come with their own side effects and issues.

It makes sense that if they are prepared to do this for aspiration (is he maintaining growth etc by feeding on his own now) that the risk is viewed as high enough that it will be said he is npo. The effect this will have on his social devolpment and oral skills is unknown but there will undoubtedly be and effect. You also have to view as to how easy it will be to get him off the tube when it is decided that his swallow is safe again, children get used to being fed that way.

From the parent of a gastronomy fed child, for us it has been a godsend but our child probably wouldn't be here without it, he does aspirate but also didn't grow without and has been fed by tube of one form or another since very small.

Your team need to get together and decide if it is urgent and he will need all nutrician down a tube or whether wait and see is ok but there is conflicting information in what you are being told.if he severe risk of aspiration there is not really any other choice, however if they think the risk is borderline and he has managed to maintain growth for 20 months And has had not recent neurological/ physical events or setbacks I would try absolutely everything else first.

I'm going to declare myself "out" here; DS has a gastrostomy but has none of the problems that you mention. Didn't want to just read and run though.

My thoughts are to keep trying not to have the tube, as tooloud says, try everything else first.

Having had a vomiting child fed through an ng tube, I lost track of the amount of times that I would either push the tube back in or put in a new tube as she had puked it up. The g-tube was a god send. We didn't do a nissen, and I think that we weren't advised properly at the time. Tbh I couldn't get my head around how this would be a good thing not being able to be sick. It probably in hindsight been the right thing to have done.

You can feed your DS on a blended diet through the Micky button. There are loads of forums about blenderized diets. It's also brilliant at getting meds into them if they're funny about taking them, and doing a night time pump feed if needed.

The eating thing, should be IMO encouraged, but small stuff to keep those oral receptors awake. Therabite therapy is recommended to help with chewing.

The drinking is best kept at a slow steady pace. You can thicken liquids or stick to smoothies. It all helps with good oral motor function and speech.

I would do the g-tube, and keep the food available for him to eat/drink. They learn to slow down their swallowing to stop the aspiration. You also need to encourage that each mouthful is carefully chewed.

I have been through all of this (bar the nissen), and it does get easier.

thankyou.

we were rather shocked when the report came back with this as the recommendation, ds is a good weight, although he has lost nearly a kilo in the last 6 weeks because of illness, but he has never struggled with weight - he is a big boy. He has had a series of chest problems since birth, he was in SCBU on cpap when he was born, and had 6 chest infections in the first year, he has had 3 since Christmas, being hospitalised for one of them. He always sounds liquidy in his chest, and has episodes where he appears to choke on his own saliva at night (he sleeps n a refulx wedge - or propped up on one of us!) - where he screams, goes rigid, and his throat swells up.

tooloudhere i don't know what nissens/ng feeding is, so i will have a google. Ds is already speech delayed - he has good receptive understanding, but only makes an 'ah, ah' sound to communicate.

It is so frustrating to not be able to talk to his consultant before May, it is such a drastic move for him to be tube fed, and as you say if the aspiration is bad enough to warrant it, then surely it should be addressed more urgently. His GP has emailed the consultant to ask about the possibility of prescribing a prophylactic antibiotic in the meantime, but he has yet to respond.

Can you put in a phone call request with your paed? That's what I do if I'm struggling with understanding something medical related. Mine always rings back.

Sorry, nissens is the fundoplication. Ng feeding in nasal gastric feeding, where the tube goes down the nose to the stomach instead of surgically into the stomach. It is not meant for long term use but certainly a lot of people start off ng feeding before having the gastrostomy. I would certainly want to try it first to see if it helps before changing my child's anatomy with surgery.

From my understanding nissens wraps the stomach round itself and creates a tightening around the valve so stomach contents can not be refluxed or vomitted back up. I do not think it helps if the the aspiration occurs due to a poor swallow or slow transit down to the stomach.

Have you called his paediatricians secretary and requested a callback or even ask for the email address. Ours is very good at getting back to us and will often see us at short notice within a day or so on a ward if problems occur.

You say that your ds had chest problems from birth, are you happy that these problems have been investigated thoroughly and are definitely down to aspiration. As you say it is a big change to tube feed, something that will probably be easier for you to deal with if you feel that all avenues have been exhausted first.
x

Little DGS (3.5) had a PEG last week so DD is on a steep learning curve! We held off as long as possible but it was a weight gain issue as he has never aspirated or had a chest infection. We have a PEG nurse who sorts out PEG care and feeding.

An NG tube was never in question (would have been out in seconds!) It does feel like a bit of a defeat but we have already seen a few ribs disappear so we are hoping to really chunk him up and look to having it removed in time. He has 500mls (500cals) overnight and is still eating 3 meals a day, only a bit smaller, but with crafty top ups of choc milk shake.

It has massively taken the stress and pressure off the feeding and if this can reduce the frequency of little hazies chest infections then its worth going down that route. Saying that DGS is still looking when the site is cleaned, but otherwise surprisingly blase!

PS I believe working to strengthen the trunk and neck is the key to aiding a poor swallow reflex. So it can get better with time. Read madwomanintheattics post on the cerebral palsy thread about her DD and aspirating. def light at the end of the tunnel.

thankyou I have left several messages with the consultants secretary, plus our gp has emailed him, but no word back.

I do think there should be some further investigation into his chest and that is one of the things I want to discuss with consultant. They seem pretty sure that aspiration is at the root, and the feeding SALT seemed to think that maybe he had aspirated before he was born, causing the respiratory distress.

It is frustrating because we waited for an age to have the videofluoroscopy done (because of confusion over where it should be done), and we are also waiting on blood test results, and a genetics referral which seems to be going on forever - I spend half my day on the phone getting frustrated!

sneezecakesmum, I am glad your dgs is putting on weight, it must be good to see results. I will have a search for Madwoman's posts, thankyou.