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

OP this sounds so tough on all of you. Your poor dd. Nothing constructive to add, but to say you sound an amazing advocate for your dd.

@VirusSchmirus any update? My child has been ill since start September and wondered how you got on?

Hi @kivas

I can't believe it's December, and whilst she is improving we are still some way off normality.

She's back at school for 3 full days, 2 days where home at lunchtime. Pain wise it ramps up still in the evenings, but she can at least function for some of the day. Trying hard to get her off paracetamol as she's been on that daily now since September. Doctor aware and doesn't seem worried.

We still see the hospital as an outpatient, and still waiting on an MRI.

How's yours?

Did you get an endoscopy done? How were the stool test results?

We went private and they found swollen lymph nodes and elevated calprotectin. However even in private didn't like we can an endoscopy done quickly. I had to call around and we are doing the diagnostic tests soon which is a relief.

Mine struggles. On bad days it is hard listening to the crying / shrieks knowing there is nothing we can do. Paracetamol doesn't touch it. We've got maybe half hour of school every few days.

They lost one of the main stool samples so we need to drop off another one. Also meant to go for a hospital appointment last week but had to cancel on the day as DD was sick (think it was part of what she has but didn't want to risk it). Called today to chase a new appointment, only to find out that they didn't actually cancel the appointment at all so was marked as a no show. After explaining managed to get new appointment mid-January.

No endoscopy, but do have MRI booked now (on 27 December, the only date in December we'd planned to try and go away to visit family! Argh!!).

Sorry to hear your child is in so much pain, it is so so hard. And it feels like so little support too - just try and get on with it. Even harder when your child relies on you to help, and asks when it will get better and you have no reassurances to give. Hot water bottle did help a bit (not much but a little) but agree paracetamol doesn't do too much. DD ended up on pizotifen at night which did settle her at night time.

Please keep me posted with your tests and I'll do the same! Hope your little one starts to feel better soon x

So my child doesn't have an ibd but they're waiting on the biopsies to understand further. They're investigating the oesophagus so had my child wear a bravo device to measure the pH levels. Let's see what this comes back to..

We find hot water bottles don't help very much. But we are slowly learning to find things that do work. It's hard but I'm more positive now I've found a good paediatrician...

How are you all?

How did the mri scan go @VirusSchmirus

It’s on the 3 January. She suffered another relapse two weeks ago when we had a busy weekend. Will mention this to the hospital when we have a checkup on 10 January. How are things for you @kivas ? Hope you had a lovely Christmas.

How did it go? We've had good and bad days. Switched medication but not working and switched the diet. We've submitted some more samples to confirm what we should do next.

It's so hard.

The MRI went OK, we're now waiting for the results. Have an appointment on 15 January with consultant so guessing we'll get everything then. She got really sore after the MRI (they had to place a piece of kit over her tummy which was slightly weighted) so last 2 nights been bad. I'm trying to wean her off calpol too, as she's had to take it every day. Doctor said that was OK but long term use cannot be good.

We are going to book an appointment with a gastroenterologist (yes I did have to spell check that!) in the meantime.

How long has your child been unwell now? We're on month 5 now. I can't even think about booking a summer holiday, as I remember back in September thinking she'd be better in December, and here we are...

That's rubbish. My kid fell unwell start of September and just worsened over time. They're not improving but I guess not worsening now. When they want to they are distracted and happy. We've started headspace now at night to distract from the pain and help sleep which seems to work.

Managed to get them in for school today but I doubt it'll be very long. It's difficult as I know they're in pain every day. Trying to keep up with studies (home schooling), work, their sibling - is all very hard plus getting them to go outside for exercise..... frustrating.

Any luck with the consultant @VirusSchmirus ?

Has anyone spoken to you about meckels @VirusSchmirus

My brother had that and was in a lot of pain for months. Scans came back clear and they thought it was appendicitis when it got so bad one night my mum took him to hospital. It was during surgery they saw that he didn't have appendicitis but he had meckels.

Hi all, quick update following MRI and 2 consultations. MRI was all clear (which obviously gave reassurance, if not some frustration as no clear medical diagnosis!). Being supported by an excellent NHS consultant who spent just short of an hour with us yesterday. She believes that whilst there is still post-viral pain (mesenteric or call it what you will), the pain is most likely now psychological. She said the brain can get stuck in a loop, with the nerves sending messages to the brain that there is pain, when it has either gone or at least reduced. Day time is now relatively OK so she can attend school, evenings are still not good although I guess that's progress.

I really believe the mesenteric issue is not researched or supported well by GPs though. It has taken so many hours of appointments to get to this point and even then things are not 100% clear - certain element of guess work going on.

I will Google meckels @thedementedelf but no blood in stools - will mention to consultant just to close that one off.

Hope things are improving for you @kivas . We are now dealing with not wanting to go to school, in a way the mental side of things has been more challenging than the physical stuff.

Hi there
you prob rem a while back I messaged you too as my daughter was exp all the same issues etc. My daughter had tonsillitis several times last year, when she did again in August she didnt recover well at all. Mes Adenitis also but then one thing lead to another, we had all the hospital and dr trips to. Ultrasound showed clear bloods etc etc. She was so unwell also, she returned to school phased return in Nov. We were told the same thing re the pain cycle and she struggled mentally also, crying a lot and also suffered being separated from me as no-one seemed to understand and she was so frightened as just didnt know what was wrong with her. I had however taken her privately as soon as we had the Ultrasound results, the consultant referred her urgently to get her tonsils out. She had it 5 times from Jan to August, it was August she then became so unwell permanently. We went private but got referred onto the NHS. She was going to school till midday by the end of week 4 when we got word for her to go for the operation. So more time off school but this time it was diff as we knew the recovery process which took a few weeks. She then got back to school 3 days before they broke up for Christmas. She is now back in school full days and although the first week was hard due to her being anxious around everyone again etc she has settled well and now all chat about school again and her friends. I would say it took from August until now for her to fully recover from everything. It was such a long hard road.. she also dance everyday after school etc and is hoping to start back into that again in a few days now too. I feel that although she need to get the tonsils out that also broke her cycle as the sore tummy gradually stopped she didnt talk about that anymore, the odd time starting back to school but most likely anxious. It's all so very hard and the not knowing is just awful. Just thought id let you know as now she is laughing playing smiling taking pride in her appearance meeting her friends and all again as for a while I couldn't help but think will she ever be the same again so I can only imagine how she really felt. Hopefully this is encouraging for you. It seems no-one really know the effects of mes adenitis so good to read and hear from others.

DS had this following a cold in October. He’d had it before a few years ago and it passed in 3 days so I was hopeful it would be the same, but this time it took 5. It was a long 5 days as he barely slept at all so neither did I. I can’t imagine what months of it would look like. One thing I read on here that I started on day 3 was drinking aloe Vera juice from Holland and Barrett. It apparently reduces inflammation. No idea if it worked or just a coincidence.

@VirusSchmirus my brother never had blood in his stool, he presented as appendicitis/mesenteric adonitis but with related shoulder pain. He had no other symptoms of meckels, it was only when they operated for appendicitis that they discovered it was meckels and removed the inflamed part.

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

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...

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.

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

@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

@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.

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

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?