Any one up? Really worried about DD

[Boatshoes]

Hi all. I’m really worried about my DD. She is 8 and, over the last year, has had many episodes of dizziness. She is under a paediatrician and was reviewed on 5th January and we were told to keep an eye on her. She then had a few more episodes so we were told to book in at the GP for a blood pressure check and ECG with a nurse (booked for this week).

Half an hour ago, DD woke up crying, saying the back of her head and her forehead were really hurting. I got her water and the pain subsided after about a minute.

I am absolutely terrified - my dad has a brain tumour and he had the same symptoms as DD. She has also had another back of the head headache a couple weeks ago but nothing that woke her from her sleep before.

She is well otherwise (so can’t blame it on a virus).

I am in such a panic that I have just this moment emailed her paediatrician and asked if I need to push for a scan because of all of her symptoms, and if she thinks it
could be a brain tumour.

im sorry to waffle but I am genuinely terrified.

What shall I do? A&E diagnosed my dad as he had a big seizure, and I am so scared that Dd has something really similar.

If they won’t do a scan for you straight away, might be worth in the meantime going to the opticians for a full assessment, they can also see things to do with the brain sometimes. Best of luck OP you must be so worried, your daughter will be well looked after with you as her mum

This is pretty common both mine had this to point if seeing black and almost passing out. GP’s etc v uninterested put down to POTS /hypermobility.

Brain tumours in children are the second most common type of childhood cancer after leukaemia, but they are still very rare. As a pp has said, a familial link is vanishingly rare and usually connected with specific genetic syndromes. They are usually different to adult brain tumours and the prognosis can be much better. Lots of them are non-malignant and slow growing.

Dizziness isn't a common symptom. Feeling sick and headaches are the most common, then it's things like vision changes or balance and coordination issues. I had a child with a malignant brain tumour who barely complained of headache and the main initial symptom was not feeling hungry.

I hope you and your DD are ok, and you are getting the assessments / investigations you think she needs. I hope whatever is causing the headache is quickly identified because I know the unknowns are the worst bit if you've been through something traumatic like your dad's cancer.

I also have this. Strengthening leg muscles, squeezing bum cheeks before standing, salty snacks all these things help. Please don’t worry. Both of mine have Ehlers Danlos diagnosis by rheumatologist and geneticist so I know it’s caused by this. It’s pretty common.

Ps we all get these headaches/migraine symptoms too

Push for everything you want checking for your own peace of mind as much as anything. Praying it’s all a waste of time and she’s back to normal ASAP for both you and her.

Sending you best wishes OP 💐

Keep pushing for a scan and don’t let them kick you out until you get one. Gentle but firm OP.

best of luck xxx

This is really horrible - how on earth did you come by your Username? Nothing could be more unsuitable for someone capable of saying something so tactless and unpleasant.

OP your daughter sounds wondeedul

for all those saying people who are mentioning brain tumours are tactless - actually supporting the OP with pushing for a scan is far from.

re the genetic link - this is more common in certain types of the more easily treatable tumours (glioma’s).

treatment has advanced so much and things like proton beam therapy are more regularly used in kids now.0

This is good advice. A simple eye test kicked of my dd treatment as they found swollen optic nerves. She was sent upto hospital and mri same day lumbar puncture the next day. We got results same day too

It wasnt a brain tumour tho

do You have someone who can come and be with you?

And are you in a hospital with a good peads department?

Oh that's really helpful 🙄

@Boatshoes I think you are doing the right thing. Don't leave without proper investigations being completed. You know your daughter best and you are her best advocate, at 8 she can't do that for herself.

You should push for the scan.
I think it's disgraceful that she hasn't been scanned already, especially given the family history.

@xcski brain tumours are not known to be familial FFS.

My son had similar and was diagnosed with Chiari Malformation. Quite difficult to diagnose, so worth reading up on.

Has PoTS been mentioned? These were my symptoms from 9-10, fainting started at 11.

I'm wondering whether DD has this but her headaches are around her temples not the back of her head. But they get worse on exercise/jumping.

This sounds familiar to me too - I have vestibular migraines and get lots of headaches and dizziness. Light sensitivity can also be a symptom. Worth getting ears checked too for any dizziness symptoms, could be BPPV or Menieres disease.

Sorry about your daughter and your Dad, OP. My Dad also had a brain tumour and it's totally understandable that that's where your mind automatically goes when another loved one has similar symptoms. As some people have already said, very few brain tumours are inherited. However, I would definitely push for a scan to try and find out what's causing your daughter's symptoms. It's horrible for both of you and I'm sure you feel so helpless. It's great that you've taken her to hospital. I really hope the doctors there take you seriously, and that you get the reassurance/diagnosis you need from having a scan done. All my fingers are crossed for you - good luck! 💐

Sending you virtual hugs OP.

Op, did your dd get scan?

Hi everyone, thank you for all the thoughts and well wishes!

We are home now, having spent from 4am in A&E. We saw a consultant who said she specialises in headaches and gave DD a thorough checking over. She said she is “neurologically perfect” and did not show any “sign of intracranial lesion”. She was not concerned by the one episode of nighttime waking and believes it may have been more muscular in origin, especially as the pain vanished within around a minute and, according to her, if it was sinister, the pain would’ve taken a long time to subside. She said that DD is probably hyper sensitive to headaches, whereas another child may be more sensitive to tummy aches. Yes, it was a red flag, but, in her medical opinion (of over 20 years), she was happy that it wasn’t related to anything like a tumour.

I did ask about a scan to clarify everything (I explained about my dad and his brain tumour) but she said that a scan is totally unnecessary. She said that as DD has a history of headaches (she’s had them since she was about 3yo), and this was probably just another episode. I did say that I was really concerned when she woke up crying with the pain, but the doc was very reassuring and said it was not, in her opinion, anything serious. Obviously, if it happens repeatedly, then her opinion will change.

If DD was to have any more headaches that wake her up overnight, then to go to the GP and ask them to do an A&G to the paediatrician so they can see if a scan is required.

Ultimately, on one hand I am relieved that Dd seems ok (she’s fast asleep now), but on the other I wanted the scan for that peace of mind. The Dr said that it would be more concerning if DD’s headaches were new, didn’t settle quickly, were worse on lying down and on bending down.

I’m going to keep an extra close eye on Dd and see if she does get anymore, but hopefully she doesn’t.

thank you to everyone for reaching out to me - I really do appreciate it x