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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:
anon0007 · 21/10/2023 23:17

This doesn't sound like mesenteric adonitis anymore op.

Has anyone mentioned chrons? It can start with lower right belly pain, bloody stools, exhaustion, etc.

Logoplanter · 21/10/2023 21:41

I've just read your thread and I'm so sorry you and you DD are going through this. I can't offer any advice but just wanted to say dig your heels in and keep speaking up for your daughter. It is unacceptable that they want to send her home with no care plan when she is in pain. It's hard to be "difficult" when it's not in your nature but you need to keep looking out for your daughter's interests and doing whatever you need to do to get them to keep investigating.

Good luck 💐

Pollyputhekettleon · 21/10/2023 21:06

You're doing the right thing. Them giving you a lesson in anatomy is not very helpful. Are they planning to do any more investigation at all?

Original poster
VirusSchmirus · 21/10/2023 15:13

They have tried to send us home today as they don't know what is causing the pain. Said there's nothing behind her tummy button (where the pain is) apart from intestines. I've said no.

Been told we can come back Monday but it will be like the last 6 weeks where I've had to chase and nag etc. That she will be checked and then it's "nothing to see here" and sent home again without a care plan.

Really appreciate the support guys, reassurance is needed as I'm worried I'm not doing the right thing here.

OP posts:
Original poster
VirusSchmirus · 20/10/2023 19:51

Thank you all, wise words.
Thankfully all medication decisions are being made by someone else now which is a relief.

i must admit I was cross when DH said the doctor had that chat. You know. “Silly girls getting anxious “, and wanting to check in taking the truth. Also really annoyed that the doctor almost used a hospital stay as a threat, when DD asked how long she’d be staying (being understandably concerned) he replied along the lines of “until you say you’re better”.

Anyway if it gets us moving forward, then fine.

I’ll learning to be a nuisance.

OP posts:
cyclamenqueen · 20/10/2023 19:45

OP you know your child best , mothers instinct is huge . So many cases where parents have been dismissed as ‘anxious’ or symptoms as ‘anxiety’ especially in girls. As an aside if your dc was male would they be so keen to dismiss as anxiety? Remember Martha’s law , if you do not feel you are making progress ask for a referral to a specialist children’s hospital . You are being a brilliant advocate for your dd .

stargirl1701 · 20/10/2023 19:45

I think I would try codeine, OP. She's nearly 12. It will relieve her pain but not cause stomach inflammation. She will need laxatives for constipation.

Pollyputhekettleon · 20/10/2023 19:41

VirusSchmirus · 20/10/2023 19:34

Thanks @Pollyputhekettleon . You’re right - I’m questioning myself now and yet I think back to every single night of her pain, and being unable to do anything - no. Not anxiety. And yes you’re right - the doctor said her ultrasound and blood are ok so he doesn’t know. My partner quite rightly said “keep trying” because they have to find the issue.

she had diarrhoea today and there was some blood in it, which I told them about. Forgot to try and get some for sample but probably be more later.

Yes almost everyone starts doubting themselves when no cause can be found, and of course you or your child being in pain for so long will cause anxiety in itself! As will dealing with doctors who blame it on anxiety... Chronic illness/pain sufferers deal with this all the time, don't take it personally but don't tolerate it either. Politely demand a second opinion, and as many more as it takes, until they figure this out.

Original poster
VirusSchmirus · 20/10/2023 19:34

Thanks @Pollyputhekettleon . You’re right - I’m questioning myself now and yet I think back to every single night of her pain, and being unable to do anything - no. Not anxiety. And yes you’re right - the doctor said her ultrasound and blood are ok so he doesn’t know. My partner quite rightly said “keep trying” because they have to find the issue.

she had diarrhoea today and there was some blood in it, which I told them about. Forgot to try and get some for sample but probably be more later.

OP posts:
Pollyputhekettleon · 20/10/2023 19:30

VirusSchmirus · 20/10/2023 19:13

DD was seen by doctor Wednesday and examined, which triggered 2 days and nights of severe pain. I asked the GP if it should have triggered more pain and he said not, and to go to hospital. So we’re here now and have been admitted. The private gp we see is also the main doctor here, and he’s immediately going down the “she’s stressed and anxious so pain is in her head” route. Calmly explain that her pain is 24/7, for nearly six weeks , she’s missed lots of nice stuff (parties, family events, drama club etc). The pain is consistent. My partner also came with us and whilst I took DD to the loo he spoke to him, kinda mentioning perhaps I’m also anxious?!. Asked to speak to an education specialist in the hospital who comes to talk to us. Think she can see that DD is not anxious about school etc. though asked to bring in last report, and if they can call her primary school? Fine, do whatever is needed to rule it out but I’m like really?! Her report says how confident and sociable she is, fits in well.

Anyway I’m glad she’s here. They can monitor her, keep her pain under control, and see how bad it gets at nighttime.

I'm so sorry, the medical profession have rather a habit of trying to blame anything on anxiety when they can't find a cause. Do try to keep your DP with you, they're far less likely to do that to men (I assume even because they asked him that he is male!). That's how it is. Don't let them get to you mentally, that's the only advice I can offer. Oh and demand a second opinion, and a third etc.

Original poster
VirusSchmirus · 20/10/2023 19:13

DD was seen by doctor Wednesday and examined, which triggered 2 days and nights of severe pain. I asked the GP if it should have triggered more pain and he said not, and to go to hospital. So we’re here now and have been admitted. The private gp we see is also the main doctor here, and he’s immediately going down the “she’s stressed and anxious so pain is in her head” route. Calmly explain that her pain is 24/7, for nearly six weeks , she’s missed lots of nice stuff (parties, family events, drama club etc). The pain is consistent. My partner also came with us and whilst I took DD to the loo he spoke to him, kinda mentioning perhaps I’m also anxious?!. Asked to speak to an education specialist in the hospital who comes to talk to us. Think she can see that DD is not anxious about school etc. though asked to bring in last report, and if they can call her primary school? Fine, do whatever is needed to rule it out but I’m like really?! Her report says how confident and sociable she is, fits in well.

Anyway I’m glad she’s here. They can monitor her, keep her pain under control, and see how bad it gets at nighttime.

OP posts:
Original poster
VirusSchmirus · 18/10/2023 17:03

Its so so hard isn't it! Today she's flat out again, and pretty low. We had an early hours chat as she was awake with pain, and she's now getting into a loop of worrying about school.

I really hope your little one improves, do keep me posted. I wouldn't wish this on anyone but knowing we aren't alone helps x

OP posts:
lantalanta · 18/10/2023 13:55

At least some progress from a few weeks ago, we are also into our 7th week. We manage to sit up do some school work but its still tears and a struggle, slow slow recovery for sure.. good and bad days.

Original poster
VirusSchmirus · 18/10/2023 13:07

@lantalanta Thank you for asking!
Changeable is the word I'd use. At the weekend we managed to get out for a coffee, so she sat upright for an hour and seemed happy. After an hour she started saying it was hurting too much, and then there were tears. But if I think back to 2 weeks ago that is progress. Yesterday she walked to a green nearby and we played a game with a ball for 30 minutes. The amount of time between pain relief is getting longer. It just seems soooo slow.

The other bigger hurdle right now is her mental health. She's been in pain for nearly 6 weeks, and away from schools and clubs. She is now getting stressed about returning to these, even the things she really loves.

OP posts:
lantalanta · 17/10/2023 19:34

how's things with yous?

Original poster
VirusSchmirus · 13/10/2023 12:10

Another week gone, and no further forward unfortunately.

Our urgent referral to paediatrics will be in about 19 weeks time (again - the "clinically well" thing seems to apply, she is eating and drinking so nothing to worry about). I contacted the kind GP only to be batted away by the receptionist (online) who said they can't do anything about the waiting times. Advised to drop into A&E if it gets worse. I've tried constantly to do the right thing but now can see why people get fed up and call an ambulance or go to A&E in desperation.

I think they might have seen that we have used private over the last 3 weeks and are thinking we can just continue down that line. We are lucky to have that option (I say lucky - we work and pay for it) but that's not available to all, what a terrible situation to be in if you have no choice.

Update on DD: mornings seem to be a bit better. Managed to get her to stand up for 10 minutes. We've also had a gap in pain medication, last lot was 3am and she's still reasonably comfortable (will give her some more now as I don't want the pain to kick off).

OP posts:
lantalanta · 12/10/2023 13:11

The private clinic say they need the ultrasound results first, I dont have private insurance unfortunately but will go anyway once I get the results

peaches19 · 12/10/2023 09:51

I would get a referral to a private paediatrician asap and go from there - private GP should be able to sort that v quickly. Private consultant should be able to see her on an urgent basis and order any more tests which might be necessary or refer to another specialist. Absolutely no way would I wait for the NHS in this scenario if I had private healthcare.

lantalanta · 12/10/2023 09:42

Mr daughter also came out in several spots on the right hand side of her torso which were itchy, sent to Dr, they thought possibly shingles so left a script to treat this 1 x 4 times a day x 5 days. I wasn't convinced so worried about giving the medicine however over a few days I gave a half a tablet a few times, these made her weak dizzy and feeling even worse totally ruined the little appetite she had. I went for check up a few days later and thankfully I didnt insist on giving her the medicine as turns out it wasn't shingles.

She has also complained about feeling itchy quite often, especially her armpits. Dr then prescribed buscopan so we tried that again she complained of feeling weak and heavy so I crush up a quarter of the tablet into a drink but notices and doesn't seem agree with her either. Like you I worry about giving all sorts of meds when nothing really seems to change how she feels for the better.

Hoping the hospital will call me today as no word yesterday.

Original poster
VirusSchmirus · 12/10/2023 09:14

Morning all! Only one wake up last night for pain relief, although took until 10.30pm to get her to sleep which is very late for her.

Private and why didn't I go sooner. I consulted a private GP in week 2. If the condition is undiagnosed then usually you are expected to use your standard GP first, and then move to private. The initial care given was good, it was the mismatch between what we were told after they ruled out appendicitis:

Would go after a few days
Not much they could do with the pain
Keep her comfortable

Note at that point we weren't given the term MA, just swollen glands.
That led me to consult a private GP.

Onto the medication. Initially our private GP prescribed the following:

x3 sachets of fybogel
Lansoprazole (taken with ibuprofen)
Paracetamol

Not surprisingly she got violent diarrhoea from the fybogel so stopped that (thinking about it, if I have one sachet that's shall we say "very effective")

On a later visit he prescribed antibiotics and amitriptyline. This is when I started questioning what the plan was. Her blood tests were clear of inflammation and infection, as was her stool sample. I bounced this off another GP who said antibiotics would not do anything useful, and might actually cause more stomach issues (particularly as she already has intolerances, so this is her weak spot). AND - for those thinking private is a great option - they cost £74 on private prescription (although if she needed them, we'd get them obviously).

The amitriptyline. Made more nervous by the fybogel experience and recommendation to take antibiotics, I read the leaflet and did some research. It was starting to feel more like desperation, throwing drugs at it rather than looking more closely into other factors. You are correct, it can be used for nerve pain, ADHD and other conditions but it does affect the brain and has significant side effects (especially when you stop taking it). I am not willing to use something that is not tested for long term safety on children on my child.

OP posts:
theansweris42 · 11/10/2023 22:57

All the drs were surprised by the length and severity. I guess there will always be outliers....

Pollyputhekettleon · 11/10/2023 22:27

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.

Do the doctors understand at all why some children get it for such a long time and others have a normal course which seems to be more like a few days?

lantalanta · 11/10/2023 22:11

@VirusSchmirus
Yes I will do, ive been reading over all these posts etc, my exp is the same. Ive been so worried about the mental health too, I would all go private to talk with someone just not sure which specialist. I was hoping to hear the ultra sound results first then do that if required.
I hope yous have a better night tonight. x

fruitypancake · 11/10/2023 21:49

Hi OP.. think I commented on your last post. Pour DD and poor you, it's horrible seeing them so low.
My DS has MA and was bad with it for a good 2-3 weeks and off school with no improvement until he gradually felt better . Although I don't think as bad as your DD by the sounds of it . Paracetamol / ibuprofen didn't touch his pain though.. hot water bottles seemed to help the most .
I really hope she feels much better soon. X

Strictlyfanoftenyears · 11/10/2023 21:32

If you get private treatment through work then Im slightly at a loss as to why you havent gone straight to that option? Particularly bearing in mind that your GP has prescribed something but you havent given it?