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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:
Keepingittogetherstepbystep · 11/10/2023 21:08

amitriptyline has more uses than just as an anti depressant. It’s used widely for nerve pain and has also been used in children who bed wet. Whilst your concerns are valid usually the DR will prescribe something that’s age appropriate. Have you discussed your concerns with the Dr that prescribed them?

theansweris42 · 11/10/2023 21:03

Hello my DS had this from Nov to Jan. Only really back to full power from the Feb.
All the same experiences as you, even had exploratory surgery when admitted for suspected appendicitis which showed huge inflammation of the lymph nodes.
He was absolutely wiped out most days. Seemed to improve a bit later in the day. Low low energy. Lots of pain.
I thought something had been missed. Or it was his mental health.
Then, gradually, he got better. He had a couple of short flare ups in the following months but recovered much quicker.
If the Drs can't find anything else and your DC has a node enlarged then that's what's flooring her. It's a mysterious one, it seems.
💐for you and DD.

Original poster
VirusSchmirus · 11/10/2023 20:58

Luckily we get the private option through work, but it shouldn't be like that.

Fingers crossed we have a better night tonight, last night was dreadful.

OP posts:
Pollyputhekettleon · 11/10/2023 20:54

It's absolutely awful. I'm glad at least you can afford to pay for private, hopefully they'll help.

Original poster
VirusSchmirus · 11/10/2023 20:51

Private - probably a week away.
Hoping the kind gp (as she has been nicknamed) will push some buttons on Friday when she's back.

Her view - as is mine - is that really more support needs to be given to these cases that last this long. Expectations of recovery, check ups (even if virtually), what to watch out for. There just isn't anything and I think it's shocking to leave these children in so much pain, along with the impact on their mental health and education.

OP posts:
Original poster
VirusSchmirus · 11/10/2023 20:47

@lantalanta let me know how you get on, and if I hear anything useful I'll let you know!

OP posts:
Pollyputhekettleon · 11/10/2023 20:42

How quickly could you see someone privately?

Original poster
VirusSchmirus · 11/10/2023 18:34

Thank you for the check ins and the links, so very much appreciated.

Now rolling into week 5. No improvement on the pain, night time is particularly bad (a few occasions where I've thought "sod it, lets go to A&E" but knowing how we'd have to wait and she'd be so uncomfortable puts me off).

She's eating although losing a bit of appetite now. Drinking/peeing and pooing all good.

The kind GP I spoke to on Monday made a referral to Paediatrics. I chased this Tuesday afternoon as she said they'd call. They told me the GP had asked for advice so no referral. Called GP and she said no, that was not the case - there are 2 classifications for referrals "emergency/same day" (which this isn't" and "advisory" which means review and take action. Her notes under "advisory" said DD needed to be seen ASAP as she was unhappy with the continuing situation.

So I call the hospital today, and Paediatrics say that they reviewed her notes and marked it as not urgent (probably because she's eating etc). And we'll get an appointment but it will be at least 19 WEEKS.

So her condition:
Pain stops her sitting for longer than 15 minutes, walking difficult
Spends most of day in bed (school been fantastic and supporting her, giving work etc for when she's OK and pain is bearable)
Temperature up and down
Tongue is green on some days
Night time is horrendous, constant wakings
Non-stop painkillers - she is asking for the next dose 2 hours later

But not urgent. We can use private BUT so far that hasn't worked well. I agree with our "kind GP" who thinks more tests are needed as the mindset has been mesenteric from the start, and potentially other things could be at play.

Bloods clear. Stool sample clear. 2 ultrasounds clear (other than (I think they said 1) slightly swollen lymph node)

OP posts:
itsgettingweird · 11/10/2023 16:25

Hope you've heard from paediatrics now?

toadasoda · 11/10/2023 16:22

Oh OP your poor little one. I remember the thread as I had just come home from hospital with my 10 yr old for the same thing. Horrendous 48 hours and then subsided quickly. She was incredibly weak and exhausted for days and spent a week off school but mostly pain free. Back to normal by about day 9 and perfect since. I'm so sorry this is still going on, sorry no medical advice for you. Keep pushing. Hugs to your girl.

beenwhereyouare · 11/10/2023 16:17

Sorry, I cross-posted. I'm glad you're in contact with someone.

beenwhereyouare · 11/10/2023 16:15

You stopped her pain medication without having a new one prescribed? Did you discuss it with her doctor? It may be that the benefits outweigh any risk. I realize you have serious concerns, but it can't be good for her to be in this much pain. Especially for 5 weeks.
Please call today.

MeinKraft · 11/10/2023 15:36

Oh yes I meant to add your DD sounds like how I felt when I had a large ovarian cyst + torsion. But i take it the scan has discounted that possibility?

MeinKraft · 11/10/2023 15:35

My son gets mesenteric adenitis fairly often when he has a virus. He certainly wouldn't suffer on the scale of your DD, he will suffer for maybe two weeks and has been sent home from school with it before but definitely doesn't spend any length of time curled up or lethargic. He does wake at night with the pain though.

lantalanta · 11/10/2023 15:24

hi there
I just came online to read more about this Mesentric adenitis again too, as I have been having all the same things go on with m y 10year old daughter, like you at my wits end, Ive been for a scan which showed nothing serious jumping out so the actual consultant didn't need to talk with me. I am waiting at the minute for a call from the Dr to discuss the results.

My daughter seemingly had tonalities again for 4th time this year around 26th August, completed antibiotics course but was so unwell sore tummy etc Ive been back and Forth Dr and hospital ever since.

She has also missed school and finds it so hard to sit up, just wants to lye down all the time. This last few days I can get her sit up bit longer as we are triton to do schoolwork but she just cry all the time. Such a worry health wise but also she is now crying worried about herself, Im so worried about school etc. She is very active enjoys school, dances so a lot of dancing and training so from that to being so unwell its just awful.

You poor daughter too, I cant find much info bar swollen glands goes away no lasting health issues, just such worry and the feeling of being helpless kills me!

Original poster
VirusSchmirus · 09/10/2023 13:00

Hopefully some positive action! Spoke to our local GP this morning (I haven't spoken to this particular lady before) and she was so helpful.

First of all she was really shocked to hear how long this has been going on without much support. She asked how DD was getting on at school and when I said she's not, she can't sit for long so spends most of the day laying curled up she was really surprised and disappointed that nothing more had been done.

She's referred us back to paediatrics, just waiting for an appointment which will be today or tomorrow. Of course they may check her over and send us back but as @geniap then we'll have to accept it and carry on.

OP posts:
geniap · 09/10/2023 07:52

VirusSchmirus · 08/10/2023 13:14

Thank you @geniap , will do this.
After the last thread I just thought we will have to wait it out, but there is no end in sight and I can't leave her suffering like this.

I just need to know what I'm asking for when I do go back so don't get fobbed off with "nothing can be done".

I think if a peadiatric gastero confirms the diagnosis and says nothing further, I would accept it, but ensure there is some sort of review or follow up in place so you're not abandoned. (You could ask for this to be done in the NHS).

Original poster
VirusSchmirus · 08/10/2023 20:47

Bumping for the evening and night crowd. Interested in any experiences of mesenteric adenitis/how long it took for recovery.
Thank you!

OP posts:
Pollyputhekettleon · 08/10/2023 15:54

If she has a dairy intolerance it's possible she's developed others now. Especially if the dairy was replaced by something like soy. Maybe that's contributing.

Original poster
VirusSchmirus · 08/10/2023 15:46

@BoohooWoohoo did the pain gradually get better? And was it severe enough to stop him moving?

There's so little guidance on this, online info makes it sound like a couple of weeks of discomfort which can be helped with OTC medication and then all good.

I'd say it's actually worse now than it used to be (I think - although the days just merge into one long day of crying, giving pain relief, trying to keep her buoyant etc).

Sorry for all the questions. Your experience sounds closer to what we're going through.

OP posts:
MrsNandortheRelentless · 08/10/2023 13:58

5 days, took about 3 days for pain to ebb then back to normal.

Absolutely horrendous medical management in the children’s hospital.

olympicsrock · 08/10/2023 13:49

It doesn’t sound right. I wouldn’t give her amitryptiline for this. How about some peppermint tea to try and calm down any bowel spasm.

I think you need to take her back to the doctor

BoohooWoohoo · 08/10/2023 13:42

My son was off school for 8 weeks then it was the Christmas holidays then he went back to school part-time for about 6 weeks.

It was an extremely worrying time and I remember wondering if this was start of ME or something.

It was extremely difficult to get the GP to help. He kept on insisting that it was psychological and he was probably bullied even though the school told him that wasn't the case.

Shopper727 · 08/10/2023 13:34

Could you stop the ibuprofen, I am very sensitive to it it gives me horrendous gastro symptoms and my second son is the same I avoid it altogether now but had a very rough time with it. I would go back as it should be settling by now. I’d ask for a paed gastro appointment then you are seeing one dr instead of loads you might get better continuity of care but it’s the nhs so things don’t happen quickly