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?

I was so so so sick with GF for years after I was extremely anaemic I was so sore and still now it is probably something that affects my energy levels

Can you try buscopan for his tummy pain?

Have you had his urine checked? Xx

@cultkid we tried buscapan and another slightly stronger smooth muscle relaxant from the GP. Neither helped.

Have they looked at abdominal migraine?

I had stomach pain as a symptom of glandular fever, in fact it was my worst symptom. Blood tests showed my liver function was really abnormal, so the pain was put down to liver inflammation. Apparently this can happen with GF. It's a nasty illness, I was fully recovered after about 3 months, but a friend at school missed so much school for about a year due to chronic fatigue 😩 Sympathies to your DS, I hope he recovers soon.

I would write to private paed, just so it's recorded, your view of it. Or pay and see him again and tell him how you feel.

Were you not in the rooms with ds the whole time. You are going to have to be more proactive, and firm.

I'd go back to GP, nhs. Say you feel like he's being dismissed. Say you don't think it's just 'growing pains'. Ask for a referral.

Polite. But firm. Politely insistent is what you need to be. "No. I'm afraid that's not ok".

Yes my son’s liver enzymes were out as well. Have they tested that? Along with the swollen spleen it did cause some pain - he was advised not to do physical sport/activities for a certain number of weeks. He was meant to be going to a physical theatre workshop for example & was told not to.

My friend got back to me. Her son originally had glandular fever but appeared to have recovered from it. But about 3 months later he suddenly (and I mean within an hour) went from perfectly well to a form of anaemia so severe that they were having to give him transfusions. This was a post-viral syndrome called autoimmune haemolytic anaemia which is cause by the immune system becoming "super switched on" and attacking its own body.This condition is apparently quite rare. But, after this attack he then went on to develop the symptoms that you describe and apart from some inflammation of his organs they couldn't find a thing wrong with him. The doctors believed him - it wasn't a question of thinking it was anything other than a physical condition, but they could find no reason for it and simply treated the symptoms. Their "best guess" was that it was an continuing auto-immune problem arising from the glandular fever, they had come across (but rarely) similar cases and the medical texts suggested they "grow out of it" in most cases. He does appear to have done so although it did take about two years.

Glandular fever can cause really intense abdo pain for months after the initial infection, swollen liver, swollen spleen, it really is horrible. You need to be very proactive if he's not going to tell the dr anything.

They can't go off his lack of pain or not if he's just sitting there being stoic. They're not mind readers.

I was clear about the level of pain. Explained he went from attending school and swimming in his club 7 hours a week to being unable to participate in anything and needing help to go up and down the stairs.

He had an ultrasound on which they said his spleen was slightly large but not abnormally so. His liver looked normal. Bloods showed one liver enzyme which was high but GP dismissed it as it can go high during growth spurts (this was before the EBV blood came back positive). The level was 455 and normal is 38.

I sent the consultant a copy of the positive EBV test the same day of the appointment (though we didn’t receive it till after). He didn’t mention it at all in his letter.

Thank you @Quveas for coming back to me!

We a follow up and both myself & DS really emphasised the level of pain. DS spoke more this time and said how he was taking over an hour to fall asleep rather than the 2-10 mins because of the pain.

More blood results and his haemoglobin was high. Blood have been repeated but if Hg still high we need to go on to a haematologist.

Dr still couldn’t give an answer for the abdominal pain so now wants an MRI.

Hopefully get some answers soon.

I didn’t mention the letter at the follow up. Decided at the time it was better to move forward.