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.

I started wearing glasses at age 12 for longsightedness and the only symptoms I had were headaches and nausea/dizziness. Young children’s eyes are very good at straining to see so they don’t actually experience poor vision until it’s really bad. Reading glasses might help.

But, since you said she’s been getting headaches for years, be on the lookout for other migraine symptoms. Light sensitivity. Sensory changes like sense of smell or taste changes. Visual disturbances. There are lots of treatment options these days.

@Boatshoes I had a private MRI last year, I had to go to Milton Keynes and was £400 but was so worth it for the reassurance, I’m not sure if they do children. Also I saw you mentioned your daughter is hypermobile. I have hypermobile ehlers danlos and also suffer with Dysautonomia/pots and can experience symptoms similar to you describe with your daughter.

dizzy spells can be anxiety in little kids too. Even if they don’t seem anxious - if they’re only happening at school for example, or have suddenly come on but seem quite random. Anyway hopefully just one of those things kids get to freak parents out :)

I don't have any advice but just wanted to send you love and 💐I hope things get sorted out and you get peace of mind xx

Bristol Royal Hospital for Children, if you are in Somerset.

I suppose you start by phoning the switchboard at the hospital, surely someone would know if they can offer a scan privately.

My severe migraines started at that age. I used to go completely blind and pass out with them. I had an MRI and all sorts of tests but nothing found. I still get them now unfortunately, although they were at their worst from around 9 until just after puberty.

Hi there
My DD was 8 and at this time of year when she had a few episodes of dizziness which would last a few minutes. Awful when she was having them. Dr thought it was an ear infection but it wasnt and after many more episodes eventually she had a brain scan ( not nice) and everything was fine. The neurologist diagnosed her with vestibular migraines. DD is 13 now and still has them periodically. Triggers are tiredness and dehydration. She also tends to have them at this time of year- no idea why. She sometimes has a fleeting headache with them but mostly its just the dizziness. Perhaps this is worth looking into?
Sending best wishes

My niece had bad episodes of headaches, she was about 9 to 10 when they started. It took years for her to eventually be diagnosed with IIH (Idiopathic Intracranial Hypertension (used to be called benign Intracranial Hypertension)). The poor love was treated by her senior school as a school refusesr, her parents were nearly taken to court over her attendance. They were treated badly by school, and Great Ormand Street Hospital, eventually getting a diagnosis and care from Addenbrooks

Thinking of you and your daughter xxx

I hope your little one is doing ok - sounds like you did exactly the right thing getting her checked out! Thinking of you both xx

Does she have or could she have scoliosis? Sounds very much like my dd who is an adult now but had problems from the age of three.

I just googled private mri my area. Could you travel to Bristol , Exeter or Plymouth if they offer them. I suppose it might be more complex with a child, more specialised ?
Also when your dd has her blood pressure taken I believe it has to be a paediatric machine, not just your bog standard monitor and not all GPs have them. ( only know this as friend’s dgc has to have regular bp checks and has to travel to a centre that can check children, can’t just pop to GP)

This is company I booked with.
https://www.vista-health.co.uk/services/mri-services/mri-scan?gad_source=1&gclid=EAIaIQobChMIn-iJz6u6hAMV0pJQBh3z_AdLEAAYASAAEgIY4PD_BwE
They give a phone number so might be able to advise you.

I used Vista as well and they were very good. The charge was slightly higher for an appointment within the next two days, and slightly less if I booked a week ahead. I was pleasantly surprised by the cost, which was much less than I expected at about £300 for a lower back scan. The scanner was older than the NHS scanner I've used since, and it took quite a bit longer than the guide time to get the report and CD of my scan, but overall I was very happy with the service they provided, and they seemed to have an extensive network of scanners.

@RuthW funny you should say that - for the past year she’s been having back pain (lower / mid back). We’ve seen both the GP and paediatrician about it and they have said it’s likely muscular / postural, but there was nothing else to it (like scoliosis). However, the times she’s complained (she is reduced to tears with it) she’s been stood still - so it’s not like she’s been doing backflips or anything to tweak a muscle.

I’m glad she’s had a thorough check over and seems to be ok. I’m going to go slightly against the grain here re the CT / MRI scan. I had an appointment with a neurologist regarding headaches due to a family history of a brain hemorrhage and his advice was not to have a CT scan unless really necessary, as they can sometimes unearth issues that you’d otherwise be unaware of and can cause a lot of worry without any action being able to be taken. He advised that structural abnormalities in the brain are relatively common and sometimes it’s better not to go looking for issues. Absolutely get her scanned if you remain worried or if you’re advised to but if it would just be for reassurance then this is worth bearing in mind. I hope your daughter is ok and things settle for her, it’s awful worrying about them.

@Boatshoes is coeliac and hypermobile related?

Glad you are feeling reassured by the checkup. Just as another side point that I think it’s worth remembering… scans have side effects too. Whilst I absolutely understand you wanting “proof” that there is nothing sinister going on, scans are radiation in themselves and so shouldn’t be done without a reasonable expectation that they will find something - otherwise you are exposing your child to radiation when not fully developed which could cause its own set of problems. I’m not trying to scare monger but just present the “other side” and make sure you consider all angles before going to try and get the scan done by someone else

Do you have anything you can measure her HR on? I use my Apple Watch to monitor HR as I have POTS symptoms on standing. If there’s a big jump in HR from resting to standing could be a possibility.

Thanks @Bobbob2015 and @mefornow - the doc I saw today was very anti-scan unless things deteriorate and she begins really suffering with them. She had no concerns about DD when she did the neurological check today, so I’m hoping that is a good sign and I can just keep an eye on things.

@LavenderPup no, I don’t have an Apple Watch or anything similar. I’m not 100% sure what POTS is? I will have a Google

I suffered from terrible headaches around the same age and I used to be be vomiting all evening once a week (same day) for months. I now realise how worrying it was for my mum (who thought I had a brain tumour) but it was thankfully just a junior migraine kind of thing. Glad you’ve been reassured by the doctor

We didn't notice my dd's scoliosis until she was 23. They said she had always had it.

Two years ago she had a headache for about three months. All investigations normal. They said it wasn't connected to scoliosis but everything you read about scoliosis says chronic headaches. My dd had suffered since she was three before migraine was diagnosed at 11.

The only thing that cured her headache was seeing a chiropractor who said it was the way she had been holding her head muscles for years to compensate for the curve. She goes every three months now and has no probs.

Go to an optometrist that has a scanner like an optomap one that will scan as much retina as possible. Her long sightedness will be getting better not worse I predict as her age as her eyeballs grow.
If she has any more dizzy spells see if you can video it and ask her actually what’s going on at the time. It’s useful to show doctors later as these never occur when you need them to in front of doctors.

read your updates glad she’s okay, I saw she has coeliac disease. I do too and I’ve noticied as I’ve got older headaches have started to be my main symptom and they’re really nasty when they happen. I also found that I developed a lactose intolerance as well and that caused headaches too! Just something else to consider!

This NHS have a decent webpage on it. If you can borrow a Fitbit or anything it might be helpful just to rule it out. https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

You mentioned the optician didn’t offer glasses as prescription was mild, I pushed for them regardless as DD got a lot of headaches. They did help.

and I agree that it is hard to get a private paeds neurologist, we had to wait about 10weeks las5 year, we actually ended up getting an NHS appointment quicker, although the testing was so much faster and more extensive privately.