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Original poster

Mesenteric adenitis... still going

117 replies

VirusSchmirus · 08/10/2023 09:42

Posted a thread about this 2 weeks back, for some reason I couldn't post comments on it after a day or so later.

DD11 caught a stomach bug, recovered, but then experienced awful pain a day or so later. This continued for a few days before I took her to our GP. Suspected appendicitis, scan rolled that out. Swollen lymph nodes mentioned, sent home to administer pain relief and keep her comfortable. This was beginning sept, she has never improved since then.

We've been back to the doctor 10 days ago, and he gave us some amitriptyline for the pain. DD is a very small 11YO, and after reading the leaflet as well as a few threads on here of people that have used it, decided against it. Side effects seem significant, leaflet said not tested long term for safety on children.

We're continuing ibuprofen (with lansoprazole to protect her tummy) and paracetamol on rotation. Hot water bottles. Etc

But here we are rolling into week 5 with no improvement, if anything the pain is getting worse in the evenings. She is eating ok, less than usual but ok. Manages to poo but at least one bout of diarrhoea each week. At best she's laying down watching tv, at worst curled up in a ball unable to move due to pain.

Bloods are clear for inflammation, coeliac, allergies etc. stool sample also clear.

2 scans show just 1 swollen lymph node in her stomach. She's missed nearly five weeks of school. We have to help her walk due to pain, go to the loo, etc. cannot bear to sit for longer than 10 minutes which makes doing anything very difficult.

My questions:
If your child has had this, how long before they got better?
Did they get better gradually, or was recovery quick?
Should we accept it is what it is, and just keep waiting, as has been the advice so far? How long do we wait?! She's desperate to get back to school and her clubs.

Any medical advice is also appreciated, before anyone piles on i obviously would discuss this with our GP first.

Thank you

OP posts:
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Sparkies2012 · 07/07/2026 22:41

Glad to have come across this thread, as my DS (12) is going through the same. He's been getting recurring tummy pain for about 4 years, which usually comes after a virus. In the last year he's had it 4 times lasting around a week each and the pain is getting more severe with regular painkillers proving useless. Had loads of blood, stool, urine tests, numerous visits to GP and still no further forward. Lots of school days missed. We're waiting on a paeds referral but its so frustrating to see him in so much pain.

WhippetMam · 29/06/2026 06:49

That’s such good news that your son is coming back to himself. I would say that was fairly similar timescale to my daughter and another few weeks on she’s almost completely herself with energy levels, racing around at school sports day, so he will get there! I think they lose a lot of confidence from it and that takes time to rebuild especially when they’re sporty kids who haven’t ever had the experience of their body being unreliable.

My daughter did however manage to break her arm three days after I last posted too so has been on relatively enforced rest for that (fell over at school) and I wonder if that has helped the recovery too!! Surely we are done with bad luck now!! That said, it was a testament to how unwell she was with the ma- they missed her break on the xray at first and she insisted on going back to school and doing the school play with two broken bones with only Calpol and a splint.

Really very glad your son is feeling better and hope he continues on the up. Think these updates are important as in the depths of despair around weeks 8-9 this thread was about the only place I saw acknowledging the longer form and how tough it is, and it’s so reassuring to hear recovery timescales.

Tr55 · 28/06/2026 22:04

Hi ladies. We finally see the light at the end of the tunnel. 11 weeks in and we’ve had so much improvement in the last two weeks.
I feel like I have my child back.
we had to push him and use some tough love,
but his finally talking to friends again, playing computer and kicking a ball around. Back to school part time. He is struggling a bit with constipation he’s on meds for.it.
Been the worst few months of my life. It’s so unfair how little help there is out there. Got so fed up of doctors telling me it’s in his head.
There has to be more they can do. x

WhippetMam · 10/06/2026 18:30

hello, we had our long awaited scan today and absolutely nothing abnormal. Radiographer was nice but so dismissive about both mesenteric adenitis and possibility of grumbling appendix although he did take time to look carefully at her (perfect 🙄) appendix. He said some nasty viruses just hang around and cause pain and fatigue, everyone has a different take, so frustrating.

I would say her energy levels are getting close to normal and the pain is down to a 2/3 out of ten, without big spikes in pain after a poo. Getting there, maybe? Had a big moment when she asked me where her swimming kit was last week as I had assumed she’d be too knackered to go, but she did it! And hoping to return to football for a tournament this weekend, wish us luck. I have accepted more or less though that a) I don’t expect her back to full power until September and that’s optimistic and b) she was burnt out and doing too much sport so had no resistance to whatever caused this- we are (I think) dropping her taekwondo as being ill has put so much in perspective for her

Well done you for getting on to the NHS. I need to hunt down the research papers I read about longer term mesenteric adenitis/prevalence/treatment and pull together as a resource.

thanks for checking in on the current patients 😍😍😍 Hope you and your daughter are doing well and having a fab summer term.

Original poster
VirusSchmirus · 08/06/2026 08:27

Morning all, I hope @WhippetMam and @Tr55 's children are hopefully starting to see slow improvements? I contacted the main NHS website today to get mesenteric added as a topic - not good that parents have to scrabble around to try and found out what is going on. Interesting as separate Trusts do have information but missing from the main website. Prompted to do so by a neighbour, whose friend's child has this and its being put down to "school anxiety" - the favourite go-to it would seem.

OP posts:
theansweris42 · 02/06/2026 10:59

Hi everyone I've posted before but refreshing to say don't despair!
My son had MA from October 2023 to February 2024.

It's awful if they get a long bout of it.

I really thought it would never end ...but suddenly he was better Flowers

WhippetMam · 01/06/2026 15:29

I would be happy to help setting up some kind of group, I did find a 2003 paper which looked at chronic abdominal pain and found 64% of the children scanned had enlarged mesenteric glands- and they had all been unwell for some time. 1-4 weeks seems to be “majority” but clearly a significant proportion of sufferers are experiencing this longer chronic form. Our GP also referenced “resetting the clock” to 1-4 weeks each time she gets a hint of a sniffle which sets it all off again, in a house with a grotty 3yo at nursery it is a nightmare.

I do appreciate your keeping an eye on this thread @VirusSchmirus it is very kind of you

Original poster
VirusSchmirus · 01/06/2026 08:43

When I have more free time, starting a support group/charity for MA is going to be top of my list! I thought I'd check out what ChatGPT says about it, and the summary guidance is "nothing to see after about 4 weeks". For those people who are looking at months, this is so unhelpful and alarming. As parents when we can't see our child improving, with no answers and more importantly little guidance or a support plan - I think its pretty frightening (I know I was!).

For some its a long journey, and I found some doctors just getting frustrated and defaulting to the "its in their mind" or "probably anxiety". I would show them photos of my DD before she was ill, and then the photos where she is curled up tightly and unable to move for weeks on end. I really really feel for those going through this. But - it does end, they do get better, it just is a long winding path for some that have the rotten luck of it not clearing up soon. Just to reiterate, the MRI, scans and bloods showed up nothing in our case (I did have to fight to get these out of sheer desperation to get some answers - its hard not to panic when your child can't move for weeks on end and no one seems to care). Please keep us updated on here, everytime I see someone has posted I do try and respond, so know that we are with you x

OP posts:
WhippetMam · 31/05/2026 09:40

Really sorry to hear you are going through this too. I think it must be more common than stated for it to last a longer period of time and become this more chronic form? I guess no treatment equals no money to be made equals no research into it as a condition due to lack of funding. So sad for you and your son, DD should also be at a football tournament today but is in bed wiped out.

Tr55 · 30/05/2026 22:22

hello.
I’m going though the same thing with my 13 year old son. Going into week 8 now.
Had an ultrasound and told he had a cluster of swollen lymph nodes. Multiple trips to the doctors and hospital with no help.
Had an appointment with a paediatrician
last week, who so far is the only one that’s listening. He has referred us to a Paediatric gastroenterologist (could be a 1-2 month wait)
no pain meds have worked . He has been off school the whole time.
He played football 5 days a week, always on the go and now spends most of his time in his room

WhippetMam · 29/05/2026 01:54

Well we had our long awaited paeds appointment and as I expected while he was very kind and took time to explain why it isn’t x or y, we are left with no help and a cheerful I’m sure she will be better in six weeks. Still having an ultrasound and waiting for results from coeliac test, but they are moving over from mesenteric adenitis to some kind of functional abdominal pain and increased nerve sensitivity which helpfully has no treatment plan. I just feel in despair with it all, her sobbing she wants her life back and I want that for her too.

Original poster
VirusSchmirus · 16/05/2026 10:13

We also got those tests, plus an MRI which were all clear. Its so frustrating, particularly as MA has no care plan. Please keep posting and letting us know how you get on, we’re here for you x

OP posts:
WhippetMam · 15/05/2026 09:54

Thanks so much for your kindness and time replying @toadasoda and @VirusSchmirus

You are dead right about the mental anguish, hearing her say she feels like she will never get better and nobody will ever help her is so bleak. It’s really damaged her faith in medicine so lots of rebuilding to do. I am struggling with the ongoing wait worrying about all the scary things it could be if it isn’t mesenteric adenitis (addisons, bowel volvulus).

Hopefully we have the same recovery you did and can move up into year 7 healthy and happy

Original poster
VirusSchmirus · 15/05/2026 08:29

@WhippetMam So sorry to hear this, and for the length of time your daughter has been unwell. When we finally got to see a good paediatric doctor, it was helpful for her to set our expectations that it would take a while for DD to get better. That kind of moved our heads from the immediate "why aren't things improving" to "this is how it is for a little while but we'll get there". One of my colleagues in Australia said his son was unwell for months - but I think that is very unusual. Either way, its not a quick fix but sounds like she's doing so so well to try and do what she can, which is important for her mental health. As @toadasoda said, the mental recovery was as tough as the physical side, my DD thought she was going to die which was horrific to hear her say. All these years on she will still mention it from time to time. The good news is she did make a full recovery and does not have any relapses at all. I promise you'll get there, you sound like you're doing an amazing job keeping things going. Make sure you look after yourself too.

OP posts:
toadasoda · 13/05/2026 19:49

I'm so sorry @WhippetMamthat's horrific. I'm glad things are better @VirusSchmirus. What a nightmare. My dd had it briefly and it was the worst thing we ever went through and it was only 72 hours or so. The lack of information made is so difficult. Dd was a bit traumatised after, nightmares for weeks. She says she won't ever have children for fear of childbirth pain. I can't imagine how stressful weeks and months of it may be. I wish you both the very best of luck

WhippetMam · 13/05/2026 16:19

Just to say thank you to the OP @VirusSchmirus for posting, we are 11 weeks into this with my 11yo dd who like yours was bright, sporty, happy social and then had tummy bug followed by sore throat and fever, quickly followed by horrendous abdominal pain. She had two weeks in that very intense lying in bed curled up exhausted and in awful pain phase, we got told it was mesenteric adenitis and refused a scan or paediatric follow up, clear bloods, stool, urine, etc. Just it will go away on its own… but it hasn’t. We’ve had brighter days and periods of slight recovery but she gets a cough or cold and we are right back in it again, never as bad as at first but daily pain and she’s exhausted, miserable, no sports that she loves and no energy. She loves school so is dragging herself through the days to be with her friends, but isn’t herself at all.

This thread has kept me sane as it’s the only place I’ve seen acknowledge the existence of long term mesenteric adenitis. We finally have paeds follow up and an abdominal ultrasound coming but the lack of information about the condition and the quite callous nothing we can do vibe has been horrible.

thanks to the OP for posting and just hoping my child makes a full recovery like your dd

Original poster
VirusSchmirus · 17/10/2025 12:49

Hi @Claire38FR - my daughter did make a full recovery. Her symptoms started beginning of September 2023, it took until December to get her back to school part time, and into January/February for everything to go back to normal. Its awful, and the lack of support is probably one of the worst things (other than seeing your poor child in so much pain). My DD was unable to walk for weeks, and was bedridden for most of that time - from an energetic child who had to go out every day for walks and play to being unable to do anything. The evenings were the worst pain wise. After I went to the hospital and refused to leave (after seeing 4 - 5 GPs) we finally got lucky with a fantastic doctor. Basically - there isn't much they can do for the pain (paracetamol and ibuprofen did nothing), but worked with DD to help her understand that some pain means rest/stop, but in this case, distraction and normality would help her. She returned to school part time, we had medication to help at night time as the pain would wake her, and gradually things slowly got better. Sending my best wishes to you - it is a very hard time x

OP posts:
Claire38FR · 17/10/2025 10:35

Hello,
I live in France and my daughter has a MA too since 1 week. She can't walk from several days. She had the same disease last year for several weeks. We have no answer and medication to help her. She has big crisis during the evening.
@VirusSchmirus how is your daughter now? Finally, do you have more info?

theansweris42 · 03/04/2025 04:32

Just to say my DS, then 11 had this for about 5 months. Then the pain stopped and he slowly grew stronger.
For another 6 months it would flare up occasionally for a couple of days.
He was laporascopically (sp?) investigated in case was appendicitis. They took photos of the swollen nodes on the mesentery.
It's real and they'll recover

MSCM85 · 02/04/2025 19:51

@VirusSchmirus thanks for the update.
That offers some hope for the future. Such limited info online and doctors don’t seem to have any answers either. It’s great to hear from someone who experienced it and has come out the other side.
Today I found on another thread that a lady had the exact same (long term) issue with her daughter. Suffering for months and months and they went to a homotoxicologist in desperation and it was resolved in days. I’m going to give it a go. Desperate now.
thanks for sharing your experience.

Original poster
VirusSchmirus · 02/04/2025 19:19

@MSCM85 I am so sorry to hear about your son - it is so isolating and there is limited information out there, which doesn't help. All her tests were also clear, bloods, stools, MRI, scans (apart from 1 swollen lymph node). We also went to a private paediatrician, dietician - you name it, we tried it. Unfortunately it seems to be a condition that divides medical opinion - some don't believe/acknowledge it, others do - but there seems little research into why some children are affected badly and what could be done to support them.

I believe that MA is a real condition, and it can take a long time to heal. DD's condition has cleared up completely (there is light at the end of the mesenteric tunnel!) but its definitely a weakness - if she gets a cold, etc - then it does flare up but no where as bad as it was the first time around (just a sore tummy along with whatever other symptoms she had), and doesn't last long either (so don't freak out!).

I don't believe its a MH issue and also felt so frustrated when we started to run out of answers, and that became the default explanation. DD only had anxiety due to being so unwell and being in constant pain, other than that she loved socialising, being with friends, etc. What did help us was working with school/clubs to try and build a plan to help move towards normality. DD had to accept that her tummy hurt and it would continue to do so - but trying to get back to some normality, and have a distraction was a good thing. We agreed with the school she'd do just an hour, and build it up gradually. We made a big fuss of her for doing that, and continued to reassure her that we believe(d) her, and that it wasn't made up or in her head. The pain never eased with standard pain killers either. We did get prescribed some pain relief that is used for migraines to try and break the pain cycle between her tummy and brain - this helped her sleep too which may have aided her recovery. This did take time - at one point I bribed her to go to the toy shop in the car, and I'd buy her anything in there. She couldn't do it, due to the pain she was in. It was an awful time.

In total she missed 3 months of school, and it took about another 8 weeks of part time schooling to build back into full time. Its now over a year ago, and it did not have any impact on her long term progress at school.

Do message me again if you need to, and look after yourself too. Its a long road with not many answers, and you start to feel like you're going crazy. He will get better, and it will be OK. x

OP posts:
MSCM85 · 02/04/2025 09:31

Hi. @VirusSchmirus
Help! Can you give an update on your daughters condition? Is she better now? How long did it take?
My son is currently in month 3. Your description of what your daughter has had is exactly the same for my son. Word for word. We have done everything you did, we are just waiting on an MRI.
Doctors are also starting to suggest it could be behavioural which just seems silly. How can so many people be experiencing the exact same symptoms if it’s behavioural.
My son got a parasite which seemed to set this off. That cleared up but he was left with multiple swollen lymph nodes. His 2nd scan 6 weeks later showed just 1 lymph node remained enlarged. Pain at the belly button and nothing helps it. He too has missed so much school. Stool and blood tests all fine. We are so worried and just looking for advice and hoping your daughters condition cleared up.
please help.
thank you

kivas · 17/02/2024 07:40

As for school - still not in as in recovery but the school have been amazing. They've given kiddo a safe space and are working with us to get kiddo in.

kivas · 17/02/2024 07:37

Hi @VirusSchmirus how is kiddo doing now? We've discovered that the infection or whatever it was has reduced but it damaged little one's gut - they now have a dairy / wheat allergy. Every time anything dairy or wheat is taken, the pain is bad Again and it can take 12 days to recover. So we are seeing massive improvements these days...

Southwest17 · 16/01/2024 15:29

Hi OP,

Without trying to scare you, have you considered Lymphoma at all? My husband had similar symptoms to your daughter with the enlarged lymph node, incredible and worsening anbdoninal/hip/back pain and the itching you mentioned immediately made me think of this as it’s a classic symptom. A scary prospect I know but worth suggesting to the GP/medics who are treating her possibly? It might also account for everything else being fairly normal (bowels/bloods etc). Is her CRP raised at all? This is another key marker for Lymphoma.

Good luck and I hope you manage to get this sorted soon