Help a desperate mum with this NHS question

Coming back to say that some of the doctors in a&e thought my sons seizures were tics. Many seizures aren't your typical drop to the floor and convulsions.

My son has focal seizures which can sometimes present as eye twitching and slight head jerks.

Can you describe what happens?

Try to film as much as you can for when you eventually get to see a doctor

Is your child diagnosed autistic? Tic and seizure like behaviours are very common.

If they are tics you could try cbd oil. Our ds8 started getting them around 4, not severe and they kept changing but we now give him 5% oil at bedtime and they have disappeared. I don't know how bad your son's are but might be worth looking into.

Have a look at FND. My DD (14) has just been diagnosed. At first they looked like tics (twitching her head) but this then escalated to her head and hands. I’ll be honest, when I first read about FND I wasn’t convinced. But after 17 hours in A&E and pushing for a transfer to Sheffield Childrens, we finally dropped on an excellent paediatrician specialising in FND and he’s 99% certain that’s what it is (MRI clear).

This was a few years ago but my relative was fobbed off by the gp for something, booked a private appointment and the private doctor said he needed it sorted on the NHS and that's what happened.

Yes, they are quite thin on the ground. I work (med sec) quite a lot in neurology (adult) and have tried to find paediatric neurologists to suggest to parents who have called in before. There are a few at Great Ormond Street I believe.

How easily can you get to London? It sounds like you need Evalina. They have paediatric neurologists that specialise in complex autism and epilepsy and more besides

Yes, it was a shock for me too at the start. We’re 5 years on now and he still has them but they are less severe. They wax and wane, he usually has the same tic for a few months then will either swap to a different one or nothing at all for a while (recently went a year with nothing) His biggest triggers are poor sleep, stress or over excitement. Things we have found help him the most are a kids magnesium supplement - we also put magnesium flakes in his bath and a good bedtime routine so he’s not tired. Good luck with it all.

If school are concerned then ask them to raise it too.

If you do book to see a private neurologist, make sure they are a paediatric neurologist, as they are two different specialisms.

My husband just had private consultants appointment, she then wrote to his GP to ask her to refer him to her on NHS

@Ladyfromthehillalso, if you do think it could be tics, there is a fantastic FB group called TIC talk UK for parents

My DS started with tics out of the blue at 4yo, they were severe and constant with only a few minutes in between. Constant eye rolling and head jerking. The GP referred us to paediatric neurology who didn’t really do much, just said really common and he will grow out of them in late teens. Hope you get sorted.

That sounds horrible. Can you describe the symptoms?

I would be straight back to the GP/A&E depending on what they are.

If it’s Tics also video them

I’d keep going to the GP as well, simply because private paediatricians are so rare in the UK, though no doubt less rare than they used to be. I’d ask for a private referral and see what they can suggest.

I think we're going to go back again very soon...

As it’s an ongoing problem, best to go back to GP at the earliest opportunity vs going to A&E. This seems like a consistent problem going illness.

I’ve paid privately many times for the initial appointment, around £250, but then been transferred to NHS for treatment. It worked really well as it meant we could jump the queue but wasn’t too expensive. Wishing your child well, sounds very worrying so money well spent. I just took my teen DD privately for an iron infusion after awful treatment (or lack of it) on the NHS.

If it is seizures, get as much on video as you can.

Without describing the symptoms its hard to know whether YABU or not.

I'd just go back to A&E again if i was adamant it is a real emergency. Try and go during Mon-Fri between 9 and 5, because peadiatric consultants should be around then.

Not neurology but in our case allergies - I took my daughter to see a private consultant after getting the brush-off from the GP, he then wrote to our NHS GP with what ongoing prescription medications she needed and a diagnosis, he also arranged that she would see him as an NHS patient in future - as he was also an NHS consultant in our area, GP didn't question it at all. So totally worth seeing a specialist privately.

Also, your GP can refer you to a Paediatrician, its one of those things worth making yourself a pain in the backside about, phone the GP daily until you get confirmation that the referral has been done, put in a formal complaint if you need to, then phone the Paediatric dept and ask if you can be considered for any cancelled appts, tell them how worried you are etc.

Hi I work in private healthcare, by paying or having a private consultation tests or even treatment does not affect in anyway your position or care under NHS