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