Mesenteric adenitis... still going

[VirusSchmirus]

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

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

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

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 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.

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

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

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.

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

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.

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

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

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

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.

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.

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

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.

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.