PEGJ Jejunostomy feeding help!

[MommaBear999]

The heading of this sounds like we are new to this but Noah, our 5 year old son, has had a PEGJ since being 5 months old. We are SO frustrated right now. Noah had undergone very few tests to get to the bottom of why he cannot thrive eating orally. I was a nurse for 20 years & now his full-time carer. We have been faiuled since day 1 by the healthcare system & after years of fighting & involving our MP, NOah has finally been referred from QMC (Nottingham) who were beyond terrible to Sheffield Childrens Hospital. However, QMC have been ignoring requests from SCH since July 2022 for an MDT so they can fully take over Noah's care!

My question is this...... Noah has 2 good weeks where he is pump-fed overnight & rests during the day so he can function normally at school. However, he gets regular stomach cramps which have him crying out in pain & after every 2 good weeks, Noah then is unable to tolerate ANY feed for up to a week and a half and has mainly a low rate of rehydration salts just to keep him functioning. This function is so low that he literally spends half of his new school life at home sick.

We saw his new (although he still does noit have Noahs history) consultants on Saturday and when we mentioned the stomach cramps and 2 weeks of the month vomitting he was very nonchalant like that is normal.

Is this normal? We have done this for 5 years but am beginning to doubt our sanity here? Are PEGJ-fed kids sick this much? Do they experience such regular and intense pain?

I am at the end of my rope trying to find some support, advice or answers for Noah!

Hi my child is pegj but doesn't experience sickness like this. Does he have a drainage bag?
I suspect this is a niche subject for MN!
It may be better to ask in a more specialised Fb group like tube feeding your child in the UK group.

Thanks so much for your response! He does have free drainage which we use during these episodes & he can fill a bag every 30 minutes!
I'm not a fan of fb but really appreciate just knowing this isn't 'normal'.
We have had very little support or input since birth & it can get so frustrating. :-(

I work in special education with pupils who are PEGJ as well as gastrostomy fed etc.

We have a few who struggle with sickness but there is a known reason and is related to their condition or illness but they have medications to help overcome and reduce this.

But on the whole most pupils aren't sick as a matter of course and this isn't something I'd expect as a matter of course for a PEGJ fed child. I always understood that enteral feeding was decided by a MDT to help a child to thrive who may well not otherwise without it.

We have pupils who are solely enterally fed due to swallow etc and some who have pump feeds to support them nutritionally because oral feeding isn't solely enough.

So sorry you and Noah aren't being heard.

I've looked after kids with a pegj in hospital and community and not come across what you're describing.
Who is he seeing at sch? I can recommend Mr Lindley from both professional and personal experience. He's really knowledgeable and a genuinely lovely man as well.

Would it be better if he had a lower feed rate consistently, I wonder? The other thing I'm wondering is if he could have cyclical vomiting syndrome and the the PEGJ feeding is a real herring? www.nhs.uk/conditions/cyclical-vomiting-syndrome/#:~:text=Cyclical%20vomiting%20syndrome%20(CVS)%20is,an%20infection%20or%20another%20illness.

*Red herring

Good thinking Lougle

Hiya. Firstly I understand your frustrations. We have a 19 year old daughter with pmld who has been tube fed for most of her life and experienced years of sickness and periods where all she can cope with is water . Also been shunted from pillar to post about the reasons for this.
We discovered a ourselves, through hours of internet searching that she has autonomic dysfunction, and this causes periods of stasis of the peristalsis of the bowels . To cut through the jargon, her bowel periodically stops wafting the shit along, and it just sits there building up gas and causing painful cramps. The knock on effect, further up the digestive tract is nausea and vomiting as the person is 'over full ' with painful gas.
This is called a pseudo chronic bowel obstruction as it presents like an obstruction, but on X-ray, the bowels are just distended.
We roll her from side to side which helps move the gas, and give her buscopan which helps with the tummy cramps. We used enteral drainage bags ( feeding her medical formula slowly through the jej whilst her stomach was on free drainage ) I know you won't want to for very good reason, but we switched to feeding 24/7 at a much slower rate to help her gut cope. Finally, after years of pushing for one, she has had an ileostomy, solely
to cope with the spasms ( so the gas can freely vent ) and the ileostomy has been nothing short of a miracle and eased the condition totally . Absolute life changer for us not to see her in so much pain. I wish I had fought harder to get this done sooner for her. Tube feeding is wonderful but comes with so many extra frustrations for some of us. Hope you find something that helps 💐

Thanks all! Yes, Noah was put onto a PEGJ following an MDT at 5 months old. @pigwood, my GOD! Reading your post had me and my husband so excited! We have been saying for years its like his bowels 'switch off' intermittently and we literally have to coast him through until they switch back on again. His barium swallow was clear, his ultrasounds have been clear, as have endoscopies but we have always felt that he is cyclic......and have said this word many times to various doctors.

We are having his school staff pump trained so when he is having these exacerbations, he can have a low rate during the day and night so you all hit the nail on the head there too.

We were under Dr Devadadson at QMC who, I am sorry to say, did nothing for Noah. We have seen Dr Sharma twice at SCH who seems kind but has told us that he 'expects' jej fed kids to have cramps and vomiting. But when a child is vomiting for almost 2 WEEKS a month and has cramps so bad that at 5 years old he is begging me to make it stop this just CANT be right??

We now see a clear pattern every single month which is:

2 weeks fed overnight - no issues

Rash appears on mouth, mucus appears in poo, begins to reflux at night, gets a cough, rash can appear on face

Cue 1 - 2 weeks where we cannot get his feed into him, he drains copious amounts of brown gunk into his gastrostomy bag and we have to rest his bowel for a minimum of 2 days with low-rate dioralyte just to keep his head above water. We then try again on feed, beginning at 20mls an hour and only going up as and when he can tolerate, which can take many days.

Then, he will have a 'bad poo' as he terms it (as he rarely passes stool during an episode) and that is our cue that we are back in the game!

I absolutely feel Noah could have something similar to your daughter but we just are not listened to. Being a trained nurse has done nothing to help our cause. I even have a detailed excel sheet now where i monitor good and bad days, his weights etc and we are still being told this is normal. We feel very alone to be honsest :-(

@MommaBear999 it took us literally YEARS to get the bottom of all this, also after years of being not listened to , treated like it's all normal ( it isn't )
Obviously you would need to discuss with the dietician but we only give our daughter 40ml/hour water overnight , never ever feed and would advise you give this a go too. For her , the feed when lying flat causes reflux and risks aspiration pneumonia. Used to make her vomit phlegm . Then the flow ratesduring the day, depending on how she is, is given at a speed of between 75-100ml/hour. This is on peptamen AF which is a part digested broken down food.
We also regularly listen to her bowel noises with a stethoscope ...... if the bowels are completely silent, she is in a period of autonomic dysfunction so we stop feed immediately, try and give her bowels a break from anything for a few hours, then start on dioralyte.
We then keep feeding ONLY dioralyte / water until her bowel sounds kick in again , art which point, it's safe to start enteral feed again. Do you think this all resonates with you? It's a tough journey to navigate

Can you chase up your current team to do the formal handover?

Our son was Jej fed following 3 years of PEGj fed, and due to excessive gastric drainage the decision was made to remove his stomach. This worked for a while being fed 24/hrs a day. Despite this slow feed he then developed “dumping syndrome” and then had TPN.
Good wishes to you all and stick to your guns.x

Yes sounds like a gastroparisis where the bowel just stops working. There is something called psuedo gastroparisis also. Or doing syndrome.
I would imagine it's the bowel to blame.

You can have a 'capsule camera' which is swallowing a tiny camera which them looks at the entire bowel..
Then there is the gastroparisis test, where dyed scrambled egg is eaten then timed with x-ray travelling through the bowel.
The pseudo gastroparisis DX can be made on symptoms & lack of other diagnosis.

It can be a very long journey sadly, lots of Drs thinking it's all in the mind 🙄

*dumping syndrome (not doing!)
Predictive text

This is so interesting to read. Thanks for your insights. I think my PMLD child has bowel dystonia but will consider this in future

@pigwood You are blowing my MIND woman! This is exactly Noah. Every single point I read out to my husband and we are practically leaping through the ceiling!

We have never been listened to. His first symptom every month are the reflux sounds when lying down. When he is having his monthly episode, we can only get anything (inclusing dioralyte) in him when he is up during the day. So that is bang on too.

I cant believe we have struggled alone for 5 years and out of pure desperation I post on here and find you! Everyone has had brilliant advice and ideas and we have taken each one on board.

I am trying to stick to night feeds with a switch to day during episodes just for now because, and I know it sounds stupid, I feel like Ive failed him if he has to be humping his pump around all day at school. I feel itll be my fault he will stick out like a sore thumb. So far at school the teachers have explained to his class what his pegj is beacuse kids were curious when they see him getting changed for PE etc but otherwise hes just like them.

We know from the nurse trainer that his school are non too keen to have him on pump at school so if he switches to full-time day that could be an issue. Their first reaction when they found out from his pre-school he has a PEGJ was to say he should be in a special school! How ignorant is that? He has crap bowels (excuse the pun) but his brain is absolutely firing on all cylinders thank you very much!

Seriously @pigwood (and every person who has taken the time to respond) I cannot begin to convey how much this means to us. We have been ignored, belittled, mocked and sneared at for 5 years. When he was down to only 5mls per hour at 6 weeks old as he was vomiting everything, a nurse kept telling us 'its only possitt' 5mls and she says bringing that back up is normal?!

We could write a book on the mistreatment we have suffered. Just to add, Noah is my 6th child (its was like 2 litters almost ha ha) and I repeatedly tell doctors none of my others had ANY problems. I did not decide at the ripe old age of 43 and having my last child that I didnt want to show him off in his pram and have him cooed over, id much rather make up an imaginary ilness and spend his first 6 months in hospital and quarter of the time from there!!

This is part of the reason I left nursing and swapped with Greg to be his full-time carer. I fell out of love with nursing when I witnessed the absolute lack of humanity towards us as a family and how much pain Noah has to go through as he has zero pain management.

I am going to set up a website specifically for parents of artificially fed kids & try and start a network of families who can work together to change the system. Get parents helping eachother with advocacy (nurse or not, I still clam up in consultations as Im so stressed and invested) and push for change like basic diagnostic pathways, developed with parents like us who know what we need as a family to feel believed and that they do have a strategic plan in place to reach a diagnosis. Once its set-up I'll let you all know. Any support will be much appreciated.

I hear so often about other parents in hospital who a) were not believed b) were not supported and c) usually diagnosed their own kids and then pushed for years to get the correct diagnostics to prove their correct theory in the first place!

We still have a long way to go and I was feeling so diminished and deflated when I decided to chance a post on here. You all have me fired up again and I cannot thank you enough xx

Just to add, Noah had a dietician appointment yesterday. She has added probiotics to his feed (well, we were told to chuck a yakult in for 2 weeks lol) to try and stabilise his bowel bacteria. She also wants to try and re-establish Nutrini as he has been on Neocate Juniot since last April due to tolerance issues. I feel at least we are doing something even though Im pretty sure it wont solve the issue. Just doing something helps I think at times.

@Brotherlove I had completely forgotten about the capsule. QMC had mentioned manometry for the lower GI tract but Sheff said no way as it would be too traumatic. They always tell us what they CANT do, rarely what they can! I'm trying to avoid being critical of Sheff yet though as they are working blind. It just shook me up when he said vomitting is normal in PEGJ fed kids when I know that 2 weeks of normality and 2 weeks of vomitting is NOT normal!

@mumof2many1943 how old is your son now? How did he cope? TPN has been my fear since day 1. I just feel so scared of how 'normal' his life will be. If we dont have a diagnosis how do we plan for the future? I cant even tell him why his tummy hurts or why he is always sick and this is what the medical professionals dont seem to get. Down the line I want to be going into teaching hospitals and lecturing nurses and junior doctors on the impact of this on familes

I dont know about you all but Greg & I have also wondered if gastric problems just aren't 'sexy' enough? Do you get me? Like, I feel medicine has its favoured conditions, the ones that are newsworthy and get get lots of funding and attenton? People are not so concerned with puke and poo!

@BiggerBoyMadeMeDoit We have chased so much that we are now completely ignored by QMC. It is disgusting. When our MP got involved and asked them to refer Noah on they said no but also wouldnt see us! It was our local peaditrician who did it for us instead. QMC have a LOT to answer for. We are not rude parents. We are not even massively assertive! But we are treated as problem parents beacuse we said that after 5 years under QMC with no progress, no management plan, no management meds and no diagnostics - can we have a second opinion please?

@pigwood I will re-invest in a stethoscope. Perfect idea. Isnt is strange that in my nursing role I wouldve done this but when it hits so close to home I have a scrambled brain and it didnt even cross my mind. I think we have been so gaslighted that Ive been doubting my own common sense here!

Oh @MommaBear999 I wish I could give you and your hubby a big hug. I totally get the gaslighting thing , we were told to add probiotics to our daughters feed years ago but it just exacerbated the symptoms for her. I'm from a medical background too and gave up my career to be a full time mum. Over the years we've been through a ridiculous amount of bullshit with some truly awful medical practitioners ( had a few absolutely amazing ones too though when it's come to all her surgeries )
You need to get your big girl pants on and turn into warrior momma ! Never ever be afraid to advocate for Noah, I've told 2 specialists over the years that I won't see them any more and to find me another one if I feel they dont believe me as they are getting in the way of the best care for your son. We were eventually referred to my eradi's team at Leicester royal infirmary , and even though he wasn't sure that the ileostomy would help her , he LISTENED and could see we had exhausted every other option and agreed to do it. We dont live anywhere near Leicester but this gastroenterologist is very caring and listens. He even went off to research our daughters rare condition so he could help making the right decision.
The school will have to put Noah's needs before their fear of the feeding pump. You shouldn't be under pressure to get the feed in overnight to suit THEM. If you look on Facebook at a page called 'nicola jane garlands craft room' she makes amazing Pump bags in loads of different funky fabrics so Noah can have a funky one for school. If you need any more info or help just ask ! So glad I've helped you guys x 🥰

Oh @MommaBear999 I forgot to ask have you tried propping his bed legs up at the head end to help with the reflux?

@MommaBear999 I was hoping you would not ask.I must stress that Stefen had multiple problems, he was a 23 week prem and he had a cerebral bleed causing hydrocephalus. He had a shunt fitted draining into his peritoneal cavity which gave him massive adhesions hence causing abdominal problems. Sadly our beautiful boy died at 13 of sepsis. I perhaps not have written but having his stomach removed really worked apart from the dumping syndrome hence TPN. I really hope you manage to sort things out. Love to your little lad.

@mumof2many1943 I am SO sorry to hear that. I cannot even begin to imagine what youyve been through to lose a child. So so sorry. It was so kind of you to add to our discussion, especially in light of your own boy. Hugs to you xxx
@pigwood we will definately try propping his head end and I ordered a stethoscope today :-)
Youre right about my big girl pants! I think beacuse we have always been treated like 'problem parents' we have been too afraid to put our foot down. You are right though - new year, new me. I will start as I mean to go on at Sheffield. I fully understand it can take years to diagnose but that's not my problem, they can spend years looking then!

I'll join FB and take a look at those bags as his is quite bulky (its the one that came with the pump). Ive been working on the website today and am going to throw myself into not only getting Noah the best care and treatment but support other parents in that too. Ive been so fed up. Leaving my career was an easy choice but I floundered with my own identity for a bit and this has all been getting me down. Throw in a good dose of peri-menopause & a cost of surviving crisis and thats why I'm here :-)

I just want answers for Noah and him to have the absoloute best quality of life. 5 years of pain & vomitting is too much for one little body :-(

Hi.

Did you ever get to the bottom of your son's health issues? My six year old has almost identical presentation. Heavy mucus in aspirates and stool with cyclical symptoms exactly like the ones you mentioned.

Thanks