From eye test to oncology and MRI?!?!

[Bonkerz]

Feeling confused. Avoiding doctor google. Don't know what to think!

Dd age 12 had her eyes tested at local opticians in half term. She left not needing glasses. Optician rang me 3 days later and said she had failed the peripheral vision test 4 times and as a precaution the optometrist wanted to refer to local small hospital for further eye tests.
A week later I had a call from county hospital (not small local) to attend an appointment yesterday (4 days notice).
Took dd yesterday for what we thought was eye tests but after an hour of dd being examined and being asked questions the doctor said she was from oncology and that she needed to speak to her consultant.
After 2 hours we were told dd needed an MRI scan and the word cancer was dropped a couple of times.
Even more scary doctor gave us a list of symptoms to watch for (tbh dd has had headaches and dizziness for months now but I put it down to weather and puberty!) and told if she got worse to go straight to A&E with her case open on oncology.
Got home and got call to take her tomorrow for MRI.

I'm really confused. Don't know how we got here. Are they being over cautious? Could the optician have seen something worrying?
TIA

[Bonkerz]

She hasn't had the vaccine yet. She's been seen by Cahms tonight who are referring her for autism tests. (My eldest is autistic)

[Bonkerz]

Not great here. Dd self harming. She says pain in her head is getting her down.
Hospital today. Bloods clear and fact that propanalol hasn't worked for her means it can't be migraine apparently. Opthomology now referring her to pain clinic. In mean time we've been referred to Cahms crisis.

[JW1226]

How is everything going I hope things have improved since we last heard from you. X

[TeensnTantrums]

My daughter has migraines & can't tolerate any of the drugs, they make symptoms worse. Though we later realised this was related to a B12 deficiency

Really good results with Feverfew herbal though. Taken everyday as a preventative it's cut down her migraines a lot. No real bad headaches, just milder aura when she does get one

[weneednopants]

I don't know how you would feel about this. But I suffered from horrendous migraines I couldn't see would be sick it was awful. I had my daith pierced 6 weeks ago. I've gone from 5+ migraines a week to only having had 2 in the last 6 weeks. There is no guarantee it would work for her but I got to the point of anything is worth a go. I just thought I would let you know my experience so maybe it's something you might like to look into

[Bonkerz]

Hospital did blood tests and MRI. Don't have the results yet.

[BlackInk]

I've just caught up on this thread OP. So sorry your DD's still suffering.
Did you manage to get blood tests done? Did anything show up on them?

[Bonkerz]

So things are not good here.
Propanalol hasn't worked. Dd I'm just as much pain as before. So much so she's now started to cut her arms. She says her head hurts all the time and cutting helps with the stress.
Doc changed her propanalol to pizotifin tonight. We don't see hospital consultants till Dec 10th and in mean time I don't know how to help dd.

[Bonkerz]

Possibly Wednesday as she's got to take her first dose tomorrow. Got to have a meeting to sort a health plan for her first

[OddBoots]

I am glad she has been seen. Will the school accept her in now?

[Bonkerz]

So today we had hospital.
Dd was seen by 7 consultants. It was quite scary when they were all in the room talking about a plan.
Basically they are treating her for atypical migraine. She is starting on 80mg propanalol for this.
She also had bloods done today and I made sure they are doing b12. She has to have another MRI scan too and then she will be seen in December to see how things are going.

[RockinHippy]

If she's had supplements containing B12 then unfortunately her blood results are likely to be skewed, which, unless you have a very B12 aware doctor, could hamper diagnosis I'm afraid. Guidelines say to treat on symptoms though, so they are on your side, but unfortunately it can make it more of a fight. It's 4 months plus to clear your system. Her symptoms strongly suggest that she isn't absorbing it

I'm guessing it already know Tracey Wittys B12 Website?? All the info you need is on there& in the files on the group I mentioned above.

[Bonkerz]

Yes I'm uk. She already takes multi vit tablets with extra b12 but I don't know if she absorbs. I don't hence the SI.

[RockinHippy]

That's fantastic, are you in the U.K.? If so be careful with SI for her & who you tell, believe it or not, if we treat our own kids, when doctors won't act fast enough, it's legally considered to be child abuse 😏

[Bonkerz]

I do regular active b12 tests by post so I could do one for DD. I also self inject b12 but don't want to do anything just yet. Will see what happens Monday though.

[RockinHippy]

111are well known to be trigger happy with an ambulance,there's no room in the questionnaire for common sense. Your doctor shouldn't be telling you off for how crap the service is & after the session I had with them this weekend, boy are they crap


Your GP doesn't sound great either, is there another you can see ??

GP can arrange blood tests. If her serum B12 shoes as low, GP can start treatment there & then. Though remember kids need more B12 than adults, my then 12 yo was in a wheelchair with serum B12 of 412, the loading dose had her able to walk again in under 2 weeks, yet as far as they were concerned her B12 was fine 😏

Do join the group though, they can help with info to give to your doctors

If you are close to London, the Viapath Clinic at Guys & St Thomas's do cheaper private vitamin test. They process NHS bloods too, do your GP can't refuse to accept the results. A few years ago it was £19 for a more accurate Active B12 Test, you can get homocysteine etc done there too. They were a great help to us.

[Bonkerz]

I just don't know what to do.
I've been told I just have to film her when she's having an attack and make sure she's safe. It's so hard to do! GP even told me off for the ambulance that 111 called on Thursday! I wanted an appointment at the walk in centre but they heard her screaming in pain and sent an ambulance!

[Starlighter]

I can’t believe you’re still waiting for answers! That’s shocking! Why haven’t they done bloods at least?! That’s such a simple, easy and effective test!

She’s missing school now too. I’d be back to the GP demanding answers.

I can’t believe they’ve just left your dd to suffer like this. .

Flowers for you both

[Bonkerz]

Thankyou. I did ask if she should have blood tests at last appointment but hospital said neurology will do it. We did get an appointment for August but they cancelled it last minute then re arranged to 10/9.
I will insist on tests though based on my PA.

[RockinHippy]

This symptom check list might be helpful..

[RockinHippy]

I was diagnosed with chronic migraines as I had them most days, also trigeminal neuralgia, cluster headaches & chronic persistent headache.

It was ALL B12 deficiency related

[RockinHippy]

Im glad they've ruled out Cancer, I haven't RTFT but spotted you are B12 deficient.

Please insist they test her fully, that means all of the relevant tests, not just serum B12. Then ask for a therapeutic trial if B12 injections.


It's hereditary as I'm sure you know & her symptoms fit that pretty well. I've had what sounds like the same visual problems show in an eye test & MS is on the list of frequent diagnosis. My mums MS actually turned out to B12 deficiency

Kids need more B12 than adults & it's important that it's caught early, or they might not fully heal. My own DD is looking at an ASD diagnosis as she wasn't treat quick enough.

If you are not a member already I suggest you join the Facebook group I the photo they were a godsend to me

[MagnaDoodle]

and for you OP