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.

@Stowickthevast thank you - the doc sat down with Dd and asked her about the dizziness. The doc determined that what DD perceived as dizziness is more lightheaded-ness, so the world isn’t spinning but she goes hot and faint, especially when she has over exerted herself. The doc said she has seen quite a few cases in recent years of girls, especially around DD’s age, who experience this and it may be related to blood pressure (we have her booked in for an ECG and blood pressure check tomo). DD was very eloquent in explaining what she feels like during these episodes and had a really thorough neurological exam, which she took like a champ x

You know what, that sounds like a very thorough examination, plus if you have more difficulties, you have a pathway to follow, which is half the battle. You must be very tired, definitely time for a cuppa.

Have they assessed her for POTS which would cause her to be dizzy / lightheaded?

Is she hypermobile? That and EDS can also be co-morbid with POTS and so can celiac disease.

Thank you @ItsallIeverwanted - I’m currently working from home on my lunch break - I’m shattered! But, on writing that, DD just woke up and gave me a beautiful smile, so it’s all worth it ❤️

Ive just been reading through some of the message again and thank you so, so much everyone - I honestly appreciate it. And to @MamaAlwaysknowsbest - I’m so glad I didn’t read your message before it was deleted. Please know that I am a mum, with worries and struggles and I am exhausted. Please be kind.

@Addictedtohotbaths the doc didn’t mention POTS, but now that you mention it, yes, DD is quite mobile - it was commented on by her paediatrician previously (my DS is also coeliac and hyper mobile) but nothing really was said any more about it

What a relief, so pleased for you, You'll sleep well tonight. 😊

Thank you, @Castlerock44 im hoping so too 😂x

Something to tuck away for later is an arachoid cyst... it basically is a cyst that "hangs" in between the brain or spinal cord and the arachnoid membrane. They have symptoms that come and go, but as the cyst gets bigger they come on more often. When the cyst blocks the exit for spinal fluid to the spine, pressure builds in the head and you get headaches - but as soon as the exit is unblocked (change position, or it just slips away) symptoms disappear. As the cyst grows it happens more often, but there are still periods of no symptoms.

Can be serious if the cyst grows to the point that it completely blocks the spine from getting spinal fluid. But in between there are no symptoms.

Males are more likely to have these, and many people have them but they don't grow/don't cause problems. So not a "likely" thing, but something to consider if the episodes seem to get more frequent, but doctors aren't seeing anything in between episodes.

Not all are familial but some are. FFS.
There is a slightly increased risk. FFS.
It should be checked out. FFS.

So pleased for you @Boatshoes . Maybe for your own peace of mind, pay for a private scan. Then you’ll be able to move on and not think about it anymore.

My eldest started out with stomach pains which were actually stomach migraine. When he was about 8 or so he started getting true migraine headaches. He luckily grew out of them as a teenager. My mother and grandmother both had migraines. I know my son and my mother's trigger was chocolate.

I'm so glad you got to see a specialist, @Boatshoes and that they gave you some reassurance despite not having a scan. I'm pretty sure that hospitals send a record of your visit to your GP, so at least your GP will be aware of it and able to take the latest development into account when assessing what to do next x

What is it with NHS doctors and their reluctance to scan? It is not like this in other countries.
@Boatshoes any chance you can arrange a private scan? I paid £350 last year for a private MRI. If it gives you peace of mind it’s worth it.

So glad your daughter has had a thorough check up and is back home. I'd recommend keeping a diary of all symptoms, just so if you need to go back, you can provide a history. Have a look at the brain tumour charity website so you're aware what the signs are in children. Brain tumours are rare, but there's enough of us here who are parenting children with them to know how worrying it is. Looking back, I wish I'd paid for a private MRI scan.

@Boatshoes I am so happy for you and your daughter, that it is such good news.

I wondered if you could get an MRI scan done privately, but solely for your peace of mind? I know how something that one's conscious brain knows is fine, can still niggle away somewhere at the back of one's mind!

Unfortunately, I do believe that MRI scans are ridiculously expensive, so if you wanted to go down that route, and obviously depending on your financial situation, you may have to save up for it over quite a long period of time. However, as you do have the comfort of the Paediatrician's diagnosis, maybe you wouldn't be too bothered about having to wait for the scan? Also, you know if things were to become more worrying, your DD would have a scan done almost immediately on the NHS.

In my experiences over the years (I am an average aged grandmother, so pretty old!) I have found Paediatric doctors to be particularly careful, and very knowledgeable, about nearly everything to do with children - which must mean they have a vast amount of knowledge, as the only thing that they are often specialists in, is a child as a whole (holistically), whereas most other Consultants concentrate on a particular part of a person's body (although they obviously have to know how their specialism interacts with other body parts and systems).

Hopefully you are not as "nervous" a Mum as me OP, and that you can therefore, now feel happy enough to trust your DD's Doctor to do the best for your DD. You will - again obviously - need to keep them updated with any new, or more frequent, symptoms - but I already know that you will do that OP!

I think that your lovely Daughter is very lucky to have you as her DM, and yes, you are very lucky to have her as well! 💐💐
for both of you xx

@Andthereyougo please can I ask how you find out if they are offered in your area? I did have a look last year to book DD in to see a neurologist privately but there was nothing for paeds. I am based in Somerset x

Thanks for your update, that does sound very thorough. Do you think you can feel more confident and relaxed for a bit? If you will continue to worry, the headsmart decision support tool has very specific advice to doctors around paediatric brain tumour symptoms, see www.mybrainfirst.org. you might find it reassuring as an isolated headache with no other brain tumour symptoms in the way you describe would result in reassurance as you have received from that doctor.

If you can relax a bit, brilliant. Remember your experience with your dad has led you to look for danger more than you normally would and that's ok for a bit, but if you carry on on hyper alert for ages its worth speaking with someone e.g. brain tumour support.

Hi Op
Glad all looks good

When i was reading your initial post just now and glad all is good. I was going to say is it migraine and I believe it is but you did the right thing going to A&E

Best wishes

I'm glad you and your daughter are at home and somewhat reassured. I googled and found that headaches and dizziness are not uncommon in people with coeliac disease, Boatshoes. I hope all is well from now on.

What is 'FFS', please? I did google and all it came up with was something that I doubt you meant in the context of this thread.

For Fuck's Sake.

I'm glad your dd is feeling a bit better and that you are home and feeling reassured.

One thing I wanted to add is have you had her vision checked? My dd complained of headaches and a little bit of dizziness around that age. She also had one really quite terrifying experience at night of what I think was a migraine where her head hurt but she was also hallucinating and seeing all sorts of weird things, flashes of light and shapes and was really upset by it all. It turns out that it was her vision. She is very long sighted. She had the usual vision check at school which said her vision was perfect, but two years later, it was definitely not. Getting glasses helped and she didn't have any more headaches after that.

Hi @mindutopia yes I think I will get her vision checked, just to err on the side of caution. I think she was checked in July and I remember the optician said she had a small prescription for ?long sightedness so I do wonder if perhaps things have declined since then. The optician said at the time that it was such a small prescription that it wasn’t worthwhile getting glasses yet

I haven't read the thread but check out Ehlers-Danlos if you have hyper mobility in the family.