If your child/a child you know has/d a brain tumour

[notallrainbows]

If your child/child you know has or had a brain tumour, what were the signs to make you get them checked out? Specifically toddlers who can't tell you how they feel?

I'm worrying for one of my DC due to a few symptoms and will be ringing the doctor Monday to push for tests (admitted to hospital this week and they did nothing) so just wanted to hear from people who have been through it.

How did you know?

I think this is one of those things it's easy to convince yourself of OP. I was convinced DD had one last year because she got frequent headaches and had phases of dizziness and nausea. Turned to me the hot summer and also stress/grief in her cases

I hope GP puts your mind at rest.

I would assume it can present differently in each individual so the only thing you can really do is wait till Monday and insist the doctor refers urgently for tests and explain to them all the symptoms

I hope everything is ok x

My child has an orbital tumour rather than a brain tumour - we noticed a bulging eye. Children we’ve encountered with brain tumours have had vomiting without an obvious reason, often in the morning, change in ability to walk eg very unsteady suddenly, seizure out of the blue.
Grace Kelly childhood cancer trust and brain tumour trust both have great info.
Hope all ok

I think that too but she's had a couple of seizures and nothing came back in her bloods to say what could have caused them ie an infection or such. And now it seems like she can't control her eyes sometimes and they roll to the sides then she snaps back with it after a couple of seconds and she's okay again.

And yep she has no appetite I'm struggling to get anything into her

A friends child had no symptoms other than an eye that started looking off to one side. The symptoms will be completely varied in different children though and I don't think you should get to worked up about it as easy as it is to say.

Eyes rolling off could be seizure activity too...there are many different types of seizure.

"I think that too but she's had a couple of seizures and nothing came back in her bloods to say what could have caused them ie an infection or such. And now it seems like she can't control her eyes sometimes and they roll to the sides then she snaps back with it after a couple of seconds and she's okay again."

Has she been referred to a neurologist? The second could be absence seizures so she could have a seizure disorder or epilepsy. Strange that the hospital didn't do a scan or EEG though

A friends 5yr old nephew had headaches so bad he screamed in agony. As an adult, my Dad had poor vision, poor co-ordination , unusual aggression & paranoia & agonising headaches: he also had a seizure where he shook then blacked out which my DM misdiagnosed as fainting. The standard GP test is stand up arms out to side. Close your eyes & touch your nose with your forefinger only. If you can't do this & the other symptoms are present you need a scan ASAP.

stumbling, co-ordination worse than normal, seizures , vomiting.

The hospital told me that they would only do a scan when she has a third seizure

Unfortunately the child I know what only diagnosed after collapsing, she had emergency surgery.

With hindsight, she just “wasn’t quite right” for months beforehand - very subtle personality changes, a bit clumsy but not concerningly so, it was all very intangible really. She did eventually start with headaches and feeling unwell, but again it was subtle and not so dramatic that you’d think something serious was wrong. She collapsed a few days after the headaches started.

Apparently most brain tumours go undiagnosed until they cause some sort of medical crisis.

My dad had a brain tumour. Seizures was the first sign and they were all the time, not just here and there.

I have epilepsy and was sent for an mri after my first tonic clonic which ruled out a brain tumour. I am very surprised they’ve made you wait, the pathway at the time was referral to a neurologist two weeks after first seizure and that in adults!

Incidentally I don’t always lose consciousness when I seize so there may be epilepsy signs that you may not have thought of.

Go to the Brain tumour Charity website as it lists signs and symptoms for childhood tumours. Also be aware that many GPs are not familiar with brain tumours and may not recognise the symptoms so push for a neurological referral.

For us it was random vomiting, weakness in left hand (due to position of tumour) and real excruciating pain that he got really upset about but couldn’t tell us (he was only 2).
We had weeks of going back and forth to GP, A&E and walk in centres we got referred to a paediatric consultant - BUT the wait was 26 weeks. In the end we paid for a private consultation, it cost us £200 and we booked an appointment for the very next day. He seemed very concerned that my son couldn’t look up to the ceiling. He sent us for a scan 2 days later (via NHS we didn’t have to pay). Best £200 I’ve ever spent.
From what you’ve said it could be epilepsy, the eye rolling etc may just be different types of seizures or absences but you won’t have piece of mind until you get a scan.
Best of luck OP, of you can afford too I would recommend a private consultation xx

www.headsmart.org.uk/

User who did you book your private consultation through?

Sorry for late reply, we booked it through our nearest private hospital, the Alexandra in Manchester, I think it was a BMI healthcare hospital, just rang them up explained what I needed and they sorted appointment with right consultant. I’ve since used them for myself as well I was so impressed with the service, for the initial appointment it was worth the money to not have to wait weeks on end.
Should have said on previous post - it could be a million and one things, you just don’t know. Also my sons tumour is low grade, slow growing and many brain tumours are in children. He is nearly 5 now and doing brilliantly x

Not my child - clumsiness- falling over fresh air & misjudging the distance/height to put things down. Then headaches. They had a great GP. I’d have less faith in mine & would book privately if I had concerns like that. However, it could be a number if things so try not to get completely stressed out by Dr Google x

My relative had a severe headache, random vomiting and clumsiness.

When ds had random vomiting I was really scared it was going to be that especially when the dr organised an MRI quite quickly but thankfully it wasn't.

Op, I see a pp has just linked you to Headsmart, which I was about to suggest too.

If you go on the "signs and symptoms" tab, as well as seeing the signs yourself you can also get an idea of what a GP should be looking out for and how they should respond to findings.

NICE guidelines say a child should be referred to a "specialist in the diagnosis and management of the epilepsies" within 2 weeks of a suspected seizure. I'm not sure if your dd saw specialists of this kind when she was in hospital but if not that is something you can cite too when you are pushing for tests.

How old is your DD?

My sibling (8 at time of diagnosis) woke up one morning being violently sick and when they came down to breakfast, my mum noticed one eye had started to turn in.

Hope Monday brings good news for you, OP.

Thank you so much everyone. No my daughter didn't see any specialists we were pretty much just sent home the morning after the second seizure.

She's 16 months old.