Vv worried

[idiot55]

Daughter age 4 has been having episodes headache, vomiting, inability to walk for a while, diagnosed migraine but after a consultant paediatrician witnessed one she has been provisionally diagnosed with occipital epilepsy. But I'm so worried e headaches are awful, and she is refusing to drink saying it gives her a headache.

So we are awaiting blood results and an EEG but I really feel an MRI is needed. Obviously I'm not a doctor but I'm so worried. I'm phoning paediatrician in the morning, but they may not agree as presumably it's crossed his mind already.

I have googled private paediatric MRI but cannot find any useful info. Does anyone know where I can start?

Where abouts are you?

Dumfries and Galloway but could travel anywhere

I know I've outed myself but I don't care, I'm so worried!

Cant offer any useful information but I would push for an MRI also in this situation

It would mean travelling to London but what about the Portland Hospital?

www.theportlandhospital.com/children/childrens-imaging-services/mri/

Hope that helps.

I'm afraid that I too would push very hard for an MRI.

I presume you are worried about a brain tumour? My son has a brain tumour and his symptoms were headaches, but always in the same place; walking a bit like he was drunk; and vomiting in the morning only. He also kept falling asleep at unusual times and by the time we got to hospital he could not touch the end of his nose to a hand in front of him, with the tip of his finger.

I hope that you get this resolved as quickly as possible so your DD gets better quickly.

Thanks all, thank you for that link. Min mooch , I hope your son is doing ok.

I am so concerned I think unless our paediatrician agrees to it ASAP, we will contact the Portland tmrow, surely nhs will see this is neede.

You can also ask the Portland whether they know any private paediatricians near you. Many NHS paediatricians also have private patients.

Does she get double vision?

My foster sister had similar symptoms but had double vision as well. Doctors tried palming her mum off, on,y took noticed when my sister had a mini stroke aged 13 in front of them.

She had Idiopathic Intercranial Hypertension. Basically there was too much fluid on her brain and was pressing onto her brain/nerve endings/optic nerve. Once she had her lumbar puncture (sp?) and shit loads of mess, she is absolutely fine.

Sorry if this worries you even more, but defnately push for the MRI.

I really hope she is ok soon xx

Too far for you but my son's consultant is excellant and sent him for urgent MRI even though he had had a CT scan.

Do push though, i think she really should have one.

You have a right for a second opinion as well.

www.parkside-suite.org.uk/index.php/consultants

My son is under Dr Peta Maltby this is where she does private practice ( we see her at Frimley Park NHS)

I'm a paediatrician, if your daughter needs an MRI she will get it done as quickly with the nhs as privately, also at 4 she is likely to need sedation to stay as still as s needed for an MRI, I would be very uncomfortable with this being done without a paediatrician being very closely involved. It does sound as if she needs imaging but I would push t have it done within the nhs rather than looking to have it done privately as an independent thing then having to deal with whatever the results of that are, rather than being in a system geared to deal with it.

Thanks all, saw our paediatrician today who was fab and checked shw doesn't have swollen optic discs, he has referred her for the MRI.

I completely agree Sally, thank you, I was panicking a bit last night. I think occipital epilepsy is vlikely, thank goodness that's hopefully all it is,as opposed To a much worse scenario.

Thanks

We all panic, normal response! Hopefully the MRI will get it all sorted.

Fingers crossed she gets seen quickly, the waiting game is so distressing. It is normal to panic, it can be so overwhelming when you have no control. Hope your DD is sorted soon, best of luck.