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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:
thedementedelf · 16/01/2024 15:00

@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.

Needmoresleep89 · 16/01/2024 11:42

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.

lantalanta · 16/01/2024 11:30

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.

Original poster
VirusSchmirus · 16/01/2024 09:48

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.

OP posts:
thedementedelf · 16/01/2024 09:37

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.

kivas · 15/01/2024 21:46

Any luck with the consultant @VirusSchmirus ?

kivas · 05/01/2024 09:01

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.

Original poster
VirusSchmirus · 05/01/2024 08:41

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...

OP posts:
kivas · 04/01/2024 21:36

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.

Original poster
VirusSchmirus · 28/12/2023 10:52

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.

OP posts:
kivas · 28/12/2023 00:08

VirusSchmirus · 07/12/2023 15:00

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

How did the mri scan go @VirusSchmirus

kivas · 14/12/2023 16:00

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?

Original poster
VirusSchmirus · 07/12/2023 15:00

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

OP posts:
kivas · 06/12/2023 22:11

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.

Original poster
VirusSchmirus · 06/12/2023 21:44

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?

OP posts:
kivas · 05/12/2023 21:29

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

Lochness1975 · 31/10/2023 13:44

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.

Original poster
VirusSchmirus · 31/10/2023 13:23

I'm having such a bad day today. New medication was working at night but last night was one of the worst, both up til 2am. Nothing was touching the pain and was borderline going to A&E - what stops me is knowing that there is little they can do, and she'll be feeling worse having to sit upright in a waiting room. Plus it will be back on the noisy ward, and she got so much worse in hospital (sleep deprivation and crap food, care from nurses was great).

We have a meeting with school tomorrow as she has missed so much. The doctor and school seem optimistic that she can go back on a phased return (which I could love, believe me) but right now, I can't see this working. I try and get her out during the day for fun stuff, and she struggles after 40 minutes. She has missed parties and events because she says it hurts too much. I thought we'd had a good afternoon at the weekend and then she said she's trying to cover it up to make me happy.

I see families getting on, having fun, doing stuff and we're just trapped in this pain cycle. I know this is reality and normal life for some, so guess I should not moan but I'm finding it harder as the weeks go on. Last night she was crying saying she couldn't do much more of this and that's just broken me today. She's 11 years old and was so happy before all of this. I really want my old boring life back.

OP posts:
toadasoda · 30/10/2023 12:50

I'm glad there is some progress OP. Please do keep us posted. my DD had same thing at the same time and I posted upthread. In a really selfish way I'm glad too its not mesenteric adenitis as your experience had me worried about my DD too (who is absolutely fine by the way).

Hugs to your poor exhausted DD. I really hope this is resolved soon.

lantalanta · 30/10/2023 11:50

how are things with you now? Has your daughter progressed any more?

Pollyputhekettleon · 23/10/2023 20:46

Oh I'm so glad for you both! Fingers crossed.

Original poster
VirusSchmirus · 23/10/2023 20:44

We are home ❤️ As a pp mentioned - this is NOT MESENTERIC ADENITIS!

We saw an amazing doctor this morning, what a difference that makes! She spent the best part of an hour talking to us (longest any medical person has), and more importantly really took the time and effort to get to know DD.

She’d looked at scans in detail and confirmed nothing worrying from them. The high amylase score will be reviewed against some more blood they took today but she’s not overly concerned (she said “scary” levels are in the 1000s, normal is 100, DD is 140). So that was reassuring although not totally ruled out until blood work back tomorrow to show any trends.

She was disappointed on a few things:
Medication being prescribed that would have affected the results of earlier poo samples (incorrectly showing a negative result)
Antibiotics (which we didn’t give) that would not have been suitable, and may have actually caused more stomach trouble
No specific blood test carried out to review health of upper bowel. She considered this a significant oversight
Amitripyline being prescribed

She has given us a stronger painkiller to be taken at night. Before doing mri and camera stuff she wants to fill in the gaps above, and see if she can calm the nerves in DDs tummy that might be permanently overreacting to something that isn’t there (if this is the remnants of the bug). She compared this to have your leg amputated, but you can still feel pain in your foot. May need to break the cycle.

More importantly she said what had been lacking was a plan. So that is now in place, so I felt happy being sent home.

So the plan:
Back tomorrow to review the night, discuss blood work, and if I can bribe DD, a poo sample
Review next week, mri not off the table but she’s hoping cutting the pain cycle might work

We’re hoping it’s not crohns as that was mentioned.

OP posts:
Pollyputhekettleon · 22/10/2023 18:05

It's fine to start doing your own research, it's not more dangerous than neglect.

You'll need to ask them again what they think is causing the raised levels of amylase and ask them to explain properly what they're saying about protein. Ask them what the normal amylase range is for her age.

Original poster
VirusSchmirus · 22/10/2023 17:53

Another day, a different doctor. Still in hospital, this one starts on the "we're not sure, perhaps anxiety" path, which I shut down. I'm getting beyond being polite about it too.

After a bit of backwards and forwards he agrees to ask the main doctor tomorrow (probably has better job title than that!) to do MRI.

I'm starting to put 2+2 together myself, which appreciate is dangerous:

Tricky baby, had almost acid like poo that we had to change within minutes
Lactose intolerance, eased as toddler, came back age 8
Got more and more sensitive to rich dairy

Perhaps this is alll linked?

I also asked about her blood work and was told her amylase is higher (about 140), and has been on the last 3 blood tests. Doctor never mentioned this before, said all good, perhaps one score a bit higher due to protein or something? He said that's not worryingly high but surely not normal? I feel like im being drip fed!

OP posts:
anon0007 · 21/10/2023 23:18

Forgot to tag you @VirusSchmirus