AIBU to challenge dismissive medical practitioner

[thisisme2468]

DS is 11, almost 12. In July he got some severe abdominal pain (he rates is 8/10) and ended up in a&e as I thought it might be appendicitis. This was ruled out and we were told it was a gland in that area. He later developed a sore throat and was very fatigued. Spent all summer holidays at home resting and only recovered the last 5 days of the holidays. GP did blood tests recently and he’s tested positive for past infection of glandular fever which explains this summer.

He started secondary school and had about 4 weeks feeling tired but otherwise ok.

The last 2.5 weeks this abdominal pain has returned and he’s back to being unable to move comfortably around the house. He needs help up and down the stairs. He’s not going out, not going swimming (the sport he loves) and just generally run down.

We have private health through work so last week I took him to a paediatrician through that. The pain should not be this bad. Received the post appointment letter from the paediatrician and he said “X looked settled and calm. He did not look like he had any significant abdominal pain or in any distress.”

I had emphasised how much the pain and fatigue was affecting DS (told him he can’t get up the stairs alone, spends lots of time in bed). That he rated it 8/10. Just because he isn’t screaming in pain all the time doesn’t mean it’s not there.

Back for follow up today. AIBU to challenge his view of DS’ pain?

A doctor records their objective view at a point in time. I imagine that your son was not showing any evidence of wincing, not being able to breathe symmetrically and fully, not being able to move around without guarding an area of pain by being bent over etc.
perhaps your son’s pain varies with time and is worse on certain movements? I don’t think a complaint is warranted.

The letter did not say that your son does not have pain simply that he does not ‘look’ like he has pain.

What about some counselling for DS - it’s such a demanding and stressful time for kids - he could be suppressing worry he doesn’t even know is there.

Notes should have included what your son said had been happening plus what the doc observed during the consultation.

Should have also included your comments to get accurate picture.

The difficulty from the clinical side is that an overbearing relative can paint a very different picture of what is actually happening.

If you're not happy, chuck it back. It may not change the outcome/plan going forward.

What did your DS tell the doctor? What pain medication does he take?

I would encourage your son to speak for himself. Get him to verbalise with assistance from you. It will be good practise for him.

Why not take him back to your own GP? Just because you have private medical insurance doesn't guarantee better treatment!

This probably won't be helpful, I'm afraid. The exact same thing happened to my friends son. He had every test in the book for 18 months, and there was no conclusive result. His spleen was inflamed at times, but they couldn't account for it and it wasn't dangerously so. They thought it was a post-viral thing - there was a term for it but I have forgotten (this was pre-pandemic) but I will send her a text and ask her what it was. But in the final analysis it was a case of waiting out whatever it was and that took two years.

I wonder if when he gets a virus, sore throat, cold etc that it triggers mesenteric adenitis, (the swollen gland they were talking about, although it’s actually lymph nodes). It can be quite painful and I think it’s more common in kids than adults. There’s no treatment I think, it’s basically the body reacting to a virus or infection. Used to happen to me when I got tonsillitis.

Did your ds speak for himself and relay the extent of the pain?

I try and encourage DS to speak for himself but he does tend to go selectively mute and just nod/shake his head or say yes and no. He came away from last appointment and said the doctor didn’t ask me when it hurt. He does wince though. I was gently rubbing his back the other day and it was noticeably hurting him.

We tried both paracetamol and ibuprofen, neither helped. We asked GP for further pain relief but there wasn’t anything.

I am wondering if this will just be how it is now when he’s poorly. It’s so restricting though and causing him to miss school. He went in for the full day on the Monday before half term and was unable to move on the Tuesday. Out of the 6 weeks of last term he missed/did only some lessons on 12 days.

@Quveas if you don’t mind texting your friend that would be amazing, thank you!

@olympicsrock I wasn’t going to complain. Just don’t know whether at this appointment to say to the doctor I’m not sure we emphasised the pain he is in. Or just let it slide.

@BIWI our GPs are lovely but they had got to the point of suggesting a paediatrician.

Maybe there wasn't the doctor could suggest based on what they saw but saying that your son doesn't seem to be in much pain does seem a bit dismissive given the fact that he sometimes can be. People have different pain thresholds. Some scream and cry over papercuts. Others try to push through appendicitis pain until someone else drags them to a doctor. I wouldn't complain but just be assertive at the follow up, get your son to describe what is happening. If that doesn't work, try a GP.

How was your son feeling when he visited the doctor? If the pain is something that is coming and going, did he see the doctor on a good day? In which case, you need to explain that, or more ideally he does. Sometimes, it is better to see the doctor while you are experiencing pain/symptoms so they can see what is going on. They don't have as much room to fob you off that way.

@Bramblejoos anxiety is something that’s come up. Both school and myself have addressed it with him. I don’t think it is that but I know it can manifest differently in different people.

The chance of getting counselling though. I tried many times for DD as she was suicidal, self harming and in a really bad place about 18 months ago. I couldn’t find anyone. Different school now so they might be able to help.

BIWI · Today 08:48
Why not take him back to your own GP? Just because you have private medical insurance doesn't guarantee better treatment“

This. In fact often, quite the opposite.

Is it acid reflux? Floored my ds recently he ended up in hospital

I understand your frustration. If your son was not experiencing pain at the time of your appointment (isn’t that always the way when you get to doctors!) that is what the clinician has to record as that is how their patient presented.
HOWEVER, there should also be noted yours or your sons description and history of pain - if this is inaccurate I would challenge this.

@Isaidnoalready That’s interesting and a good point. What sort of pain did your DS have? We are all hypermobile and I have a hiatus hernia so chronic acid reflux runs in the family.

DS was in pain at the doctors. He hasn’t had any relief from this pain for 2.5 weeks. It’s constant. But he is introvert/internalises it. He’s 11 but sat in a&e being prodded over and over with needles because they couldn’t get blood (think it took 12 attempts in the end) without a peep out of him. I don’t know many kids (or adults) who would put up with that!

I have a hyper mobile son who has suffered on and off with stomach pain like this. He was diagnosed with mesenteric adenitis a few years ago. Whenever he gets a cold or virus it hits him in this area too. He had a dreadful time after covid, took him a long time to recover with ongoing constipation issues and stomach pain, we’ve had to work through bowel clearances and all sorts.
he’s much better now and back up to full speed but it’s taken a year. We realised a lot of it was anxiety as he’s been much better since changing schools, too.
not much more to ad really, but I would ask the doc why he’s recorded just one moment in time and not an ongoing pain issue.
hope your son feels better soon, it’s so hard on them.

@thisisme2468 GF is a really horrible virus that can keep causing problems for a long time after infection. I had it when I was 19 and was bed bound for 2 weeks with a very very high temperature. off work for 2 months and for 2 years afterwards got every virus going and tonsillitis at the drop of a hat (GF started in my throat).

My sister was diagnosed with GF post infection - she wasn't ill like me but had two or three flu like illnesses over a short period of time - she had much longer lasting symptoms and recurrences of pain. My son (24) has been diagnosed with past infection of GF after many months of blood tests etc to find out why he was so exhausted all the time - he still gets bouts of pain in joints and exhaustion.

I was told that GF affects both spleen and liver so its not impossible that your son is still suffering from the actual virus if he's having stomach pain. I feel so sorry for him - its horrible to go through and as its a virus, there aren't any pills which solve the problem quickly. I had a food tolerance test after my illness and discovered a severe allergy to white bread and white flour among other things. (wholemeal/ brown was fine - it was the bleach used to make the stuff white that affected me) and if I avoided these, felt so much better. Is it worth keeping a food diary?

Has he had an ultrasound scan? Glandular fever can lead to the spleen swelling which can cause abdominal pain. Ds2 had that with glandular fever.

And yes I agree it can last a long time. Ds2 had two inpatient stays last year following GF that started following covid. He seems a lot better now (a year since the second inpatient stay, 2 years since covid) - but he had to really pace himself for a long time. He still needs to make sure he doesn’t miss out on too much sleep (he is in early twenties so being out is a bit part of his life!)

Ah, I would think that’s a different story then. As he masks his pain well I would expect to find this reflected in the letter and to be taken seriously, even if he presents as well.
That being said it still remains that if your son was sat calmly showing no outward signs of pain that is what the doctor has to report. They do have responsibility to document your sons management of pain so he doesn’t get dismissed as being ok when he’s not. I would mention the 12 attempts at needle stick with not a peep - that’s quite something, your poor boy! Hope he never goes through that again

What about some counselling for DS - it’s such a demanding and stressful time for kids - he could be suppressing worry he doesn’t even know is there

I absolutely hate this gaslighting trend for putting every medical issue that doctors can't immediately diagnose down to "anxiety".