AIBU to stop meds and seek second opinion (child headache)

[user76438]

Apologies - shameless AIBU post for traffic. And sorry, long.

NC as outing. DS12 has had a constant headache for nearly three weeks. Has had a few previous episodes of headache over last three or so years, but none so bad or long-lasting. Had some vertigo with it for the first week (now stopped) and is finding it harder than normal to focus eyes (no constant blurred vision). Headache is mainly at front, with pain radiating in a band around head. Pain varies from mild to moderate, but never goes away completely. Present on waking and all day (waking occasionally at night but no worse at night). Has missed many days of school. Also feeling permanently cold and tired, with severe breathlessness once after exercise.

On one hand, NHS have been brilliant. Have had two urgent treatment visits, two GP appts, a course of ABs for possible sinusitis, an urgent paeds referral with two consultations, an ECG and two blood tests, all within three weeks. Have also seen an optician and a dentist.

All results basically normal. Blood test showed low ferritin and neutrophils, but not crazily low - all else fine. Optician fine (no swelling). ECG fine. Repeated neuro checks fine (strength, balance, eye coordination etc etc). No nausea or vomiting.

All doctors have reassured us that there's no indication of a sinister cause (tumour etc). But I'm really unsure about the outcome. Consultant paediatrician has diagnosed migraine probably due to incipient puberty and stress, and prescribed Pizotifen for a few weeks/months to see if it helps. We gave DS one tablet tonight, but I've now done some more thinking and reading, and I really don't know whether to continue. I don't think the symptoms are like migraine (more like chronic tension headache). The coldness and fatigue seems to have been ignored. Although I realise we wouldn't necessarily know, I really don't think DS is suffering from stress. And it doesn't even seem like Pizotifen is the normal first line for chronic migraine any more. She also told us there were no side effects, which doesn't seem true! This seems like a big step to take after three weeks of unexplained headache with other symptoms which don't really fit migraine that well, as far as I can see. I'd really like an MRI, but I appreciate that the NHS doesn't want to fund this just to reassure me.

Questions - firstly, AIBU? Should I listen to the consultant and try what's been recommended in spite of my doubts? Second, if I go withy gut, am I OK to stop giving the Pizotifen? The leaflet says to never withdraw it suddenly - but is this OK after just one dose? And if I do, what next? I like my GP very much, but presumably her only step is to refer us to paeds - which she's already done.

I'm seriously considering a private paeds consultant. I just don't know what to do.

So, if he's seen an optician the vast majority of brain tumours in children present with an obvious pushing forward if the optic nerve which would almost definitely have been seen.

The coldness etc, has he had blood tests for thyroid and diabetes and a full blood count? If not start there

They seem to have been very thorough, if you wanted complete thoroughness you could ask for head CT or MRI. I wouldn't stop meds though, I'd keep going and see if they help while also having these other checks in the background because migraine is a plausible diagnosis and treating it could bring your son relief while waiting until you've had test results means he'll suffer more.

Thanks, that's reassuring re optician. Thyroid and glucose are normal. My hesitation with the Pizotifen is that it won't relieve his current symptoms (it reduces frequency of future migraines but doesn't relieve current ones), it has side effects, and it's hard to stop. I'm not saying I definitely don't think it's migraine, but I worry that we're ignoring/not treating other symptoms in the meantime. I asked for imaging but they won't refer (I do understand that, it's presumably a cost vs risk calculation based on lack of tumour symptoms).

If I were you, I would book a private Paediatric consultation for your own peace of mind.

It sounds like the NHS have been thorough but if you’re not certain about the treatment plan, the value of sitting down with someone and having their undivided attention and being able to fully explain everything is huge.

Even if all it does is make you feel less worried, it’s worth the money.

How low is ferritin?

If it’s low I’d consider that causing it. It’s how I respond. But, I’d push for an mri due to family history of a dc with water on the brain the nhs missed. She was my beautiful cousin and died - it’s really really rare so please don’t be scared as it’s unlikely to be that but this would make me push.

My DD had something v similar. Terrible headaches, and almost a term off school. Lots of scans, paediatric appts etc.

She was in such pain. She looked almost grey. She was 13 at the time.

They put her on Amoxicillin which helped a bit but made her so groggy.

Long story short, she’d been clenching her teeth at night. Probably for years.

TMJD - Finally picked up by an ENT consultant and we then went through to a maxilio facial consultant. (Btw, the waiting room was full of teens with their parents…)

A combination of a mouth guard and some counselling finally sorted it.

This may have already been ruled out, but thought it was worth mentioning. Good luck. It’s a horrible situation for a parent.

Dd was diagnosed chronic migraine that age for her propanolol worked intially but a decade later after many diff meds is on pizotifen which helping.
Stick with the pizotifen for 3 months then review
Request mri but seems no obv signs of urgency
Refer to a child headache clinic eg gosh or regional
Keep a headache diary this is v important google

headache diary gosh

to download

If you really want imaging then go to a private paediatrician, seems fair to not offer just now tbh but if it puts your mind at ease and you can afford it go for it

Low ferritin gives me the most horrendous symptoms - very similar to what you’ve mentioned. This happens even when it’s in the NHS “normal” range, if I’m lower than where my body likes to sit.

Thank you so much everyone. @NeedAHoliday2021 I'm so sorry about your cousin.

@Pumpupthejampumpitup that's amazing about the teeth clenching. DS has actually been complaining of pain in his teeth on one side when he bites - dentist checked it out and couldn't find anything wrong - thinks it's just teeth waiting to come through - but I do think an ENT might be a good person to see.

Annoyingly, I don't have the ferritin figure - I'm going to phone the GP on Monday and see if I can get hold of it. The paediatrician told me that low ferritin on its own (without anaemia) can't cause symptoms, but the Internet disagrees. I think there's a good chance it's iron-related, but presumably if it is, it will take a while to correct.

I've booked a private paeds consultation, but they can't seem him for a week. In the meantime, the poor child is just miserable - he's been in unremitting pain for three weeks now, totally wiped out, pain relief does nothing. We got him into school today and he only lasted two lessons - sent home feeling awful and with a low grade fever (which had vanished by this evening). I just feel so helpless.

Can you remember if the headaches ease up on the holidays? Wondering if this could give a clue as to tension headache vs a physiological cause…

Thanks. He hasn't really had headaches enough for there to be that kind of pattern. He does get tired near the end of a term, because he throws himself into everything, but he loves school and seems very happy. He's really sad at the moment to be at home and missing stuff.

Id ask the dr for iron supplements as even mildly low could make him feel rubbish.
Migraine diary and food diary - mine are triggered by dairy.

Other thought is covid - it seems to have triggered migrains in lots of my co workers who have never had them.

Low ferritin can cause symptoms! I’m currently on high iron dose trying to get mine to normal so I feel less awful.

I suffered from allergies so also get headaches which only ease with nasal spray called dymista which is anti histamine and steroid Its the only thing that got rid of headache I had for a week. I had none of the usual sinus symptoms such as congestion or discharge, just intense headache.

Thanks again. We're already keeping a food and headache diary - no patterns yet, but we'll keep at it. Covid test was negative, though he could have had it previously (he had similar symptoms for a while before Christmas). I think I might ask the GP about iron supplements, irrespective of seeing the private consultant.

That's interesting @Hankunamatata . DS does suffer from hay fever and frequent nosebleeds (mainly seasonal).

Just take the pizotifen. My dd went on it about that age and she's 26 now. Can't manage without it.

@user76438 It was the ENT consultant who finally recognised what the problem was with DD, but wasn’t able to treat her. R

She had to go and see a Maxilio Facial consultant. They’re the ones that deal with jaw/teeth/face disorders. She had a splint made up on the spot that she had to wear at night.

Interesting that your DC has complained about tooth ache. I took DD to my dentist and he never once mentioned that it could be teeth clenching. They are obviously not trained to spot it.

It sounds like he's been seen by several experts and they don't think it's a sinister cause which is great news! Regards the medication my thought is that no amount of googling or reading through guidelines can compare to the weight of their knowledge and how to apply it. There are always subtilties to treatment plans and this doesn't sound like a simple diagnosis/treatment plan to make.

I would stick with the treatment regime they've prescribed unless it seemed to make things worse/reacting to it. If it doesn't help despite a good trial then it's more knowledge about the condition and it'll be weaned off. If you never properly trial it then could there be a risk of that being a sticking point - now he's not getting better as there's a refusal to treat the suspected cause, as opposed to not getting better because they're wrong about the cause. But it may well be this is the thing that settles the headaches.

The low ferritin can absolutely explain the coldness and fatigue. Did the doctor ask for repeat tests to check the neutrophils? (Depending on how low) Low neutrophils indicate that your child may have a decreased ability to fight off infection - especially bacteria. I would even look into getting your child some supplemental gut bacteria to help boost their immunity at this time.

I had similar through my teens, onset around 12. They looked for every cause possible for years and years. They eased up a lot when I was about 20 and now get bad around my periods. In my case it really was puberty causing migraines although they felt more like tension headaches.

Were B12 levels checked and if so what was the level? The threshold for supposedly being OK is really low in the UK and it's possible to have symptoms of deficiency until levels are much higher (something along the lines of normal range 150 - 900 but deficiency symptoms under 500). You can't take too much - it's excreted via urine so take loads in case it makes a difference. The other thing to try is an osteopath- teenage DD had on going headaches and masses of gymnastics/ballet/rugby/taekwondo had taken its toll on her body - she was massively sceptical but after the first session could feel a difference and it really helped.

The paediatrician told me that low ferritin on its own (without anaemia) can't cause symptoms, but the Internet disagrees.

do these people who disagree have medical training? What is the mechanism that low iron stores can cause symptoms?

tbh my first thought was that it sounds like covid.

I'd really push for a scan.

My toddler had a 3 week headache, waking her occasionally night etc. For her it was a brain tumour. She'll probably be alright (though with some lifelong disability and impressive scars) but I'm so glad that I nagged the doctors. They too reassured me the first 3 times thay there wasn't anything severely wrong.

I've met kids who have been diagnosed via the opticians - its reassuring that they didn't pick up anything, but it's also not conclusive.

Chances are its not a tumour, but you don't mess around when it comes to heads.