Private paediatric neurologist (preferably Birmingham?) help! No clue what I'm doing

[Moonmoose]

For the last three days now, my 13 month old son has been having episodes where he repeatedly rolls his eyes up and to the side for a few seconds (same side every time). Yesterday, we were sent by 111 to an urgent care centre. We were sent away after they saw the video I took and did his temperature and other general observation things. They said they weren't concerned because he seemed well, and he could just be doing the eye rolls deliberately.

I'm just not convinced, especially after this evening where he had a scary episodes of strange behaviour. I'm well aware that I am probably just being an overly-anxious parent, so I don't want to waste any NHS time if I'm just being silly.

I was hoping to see a private paediatric neurologist who could talk this over with me and maybe even do any tests like an EEG that would be helpful to rule things out.

We're really lucky that my husband can access money towards private health care through his job. It's not something we've ever done before though, so I don't know where to start.

We're in the midlands, so I was hoping to find something in Birmingham but we will travel if need be. As I said, I'm out my depth here and everything I google seems to lead me nowhere. I'm finding lots of names of doctors online, with no way to tell who's highly recommended and who isn't and often how to even contact them.

Can anyone help me?

(Also if anyone has any guesses about how much we're looking at here, that would be helpful)

I'm assuming you have a policy like Simply Health that allows you to claim money back (rather than Bupa where you have to have it pre authorised and use their preferred consultants). You could start by looking at the NHS paediatric neuro consultants at your local hospital and seeing if they do private work? You could also look on the Bupa website to find their approved consultants or contact the local private hospitals (Bupa or Spire or Nuffield are some of the names I know). Just be aware that some of them will also have long waiting lists. I'd expect it to cost about £450 for an initial appointment. You normally need a GP referral - we get ours through Babylon which I think costs about £50 if you are self funding. The costs can quickly mount up if testing is required but if that is required, you may be able to be referred back to the NHS.

My son had seizures from birth and was only diagnosed at 3 months.

If you think it is seizures then you need to take him to a and e next time he has them. They will have access to a paediatric neurologist there who can assess him if needed. Keep videoing them and start keeping a record of how often they happen and how long the episodes last.

A private neurologist will just be one of the normal NHS doctors and they might well need to do an MRI which will be crazy expensive privately. I would guess a private MRI would be tens of thousands of pounds. Eegs do not always detect seizures even when they are happening. It depends on the type of seizure. My son had a 24 hour EEG where they glued probes to his head.

Try not to worry. They sound like they could be seizures but although seizures are scary to watch, and need looking into, they are not necessarily urgent in terms of treatment. By that I mean that it can take some months to get the medication right and so you might have to put up with seizures for a while.

Keep pushing for a diagnosis. The quicker they work out what is going on the better.

there are very few of these around. Try to find one yourself as bupa will give you the cheapest!

Try Dr Shakti Agarwal at the Childrens and see if he does private.

you might have to look at Nottingham too.

I know of a private paeds neurologist at the Portland in London if you can travel - Dr Adelaida Martinez. She was fantastic with my daughter, and handed off care to the NHS (Great Ormond St) when appropriate. Another neuro often recommended at the Portland is Dr Kinali.

Sorry I can't be of more help with local specialists. BUPA have a list of approved consultants so you cd check on that for one near you, or on the equivalent list published by your DH's PMI provider

The insurers want you to specify the named consultant for paeds referrals, and won't recommend themselves.

I think you may struggle to get an appointment with a paediatric Neuro, can you medical insurers help you find one? A pp is correct, they will have an NHS position and hold a private list too. Unfortunately due to the NHS crisis, many people are opting for pay privately, so the private service is also under strain.

I saw an Neuro privately on a few occasions, leading up to my MS diagnosis, just to give you an idea in price (10 years ago) initial appointment included examination £250, follow ups were £220, MRI head, cervical & whole spine £850. I also had many blood tests & chest x ray (these were done via GP/NHS.

When you took the baby to hospital, they didn’t refer him to Neurology? If so I would take comfort from that OP. MRI in a child of that age, would require sedation, to ensure the baby was still. But if you saw a private Neuro, it may be worth it to give you peace of mind.

Unfortunately, they aren’t enough paediatric consultants available for the demand, my sons have seen private ent, dermatologist, gastroenterologist in the past, it’s always a matter of ringing around, but some specialists will not see a patient without a referral from GP.

Good luck OP.

To add - picking up a point earlier re waiting lists - we were seen at the Portland v quickly, first appt within a week or so. They will order a string of tests to rule things out but you pre-clear these with your insurer so you know that they will pay. I've never had any trouble getting the insurer to pay for these tests if consultant has ordered them.

From bupa list - paed neurology nr Birmingham - in case helpful

www.finder.bupa.co.uk/Consultant/view/aWFXcVBCa2liSUZUdWhZalF2VExxZz09/?ql=Birmingham&qla=&qlo=&fhospitalNetworkId=

I’d echo a previous poster who recommended Dr Adelaida Martínez she’s a fantastic paediatric neurologist. She treated my daughter when no other Dr could diagnose her. I know she’s not in Birmingham but she’s worth travelling to see if you can
Good luck I know how stressful it is when you know potentially something is amiss with your child

There were private paediatric consultants at the spire hospital in Solihull but I wasn't impressed with it. The Portland was fantastic though and close enough to Marylebone that it's not a bad trip anyway. I also found waits to be much shorter in London than the Midlands.

I don't know about private, but my son had m

The Portland in London is a one stop shop and will give you options. However in the meantime, I would take your child back if it happens regularly or is sustained or if anything else changes or if you are worried.

Sorry, my phone is delayed and pressed the wrong button.
My son had myaclonic seizures as a baby. My gp refered him without hesitation where a paediatrician did an ecg even though she was pretty sure what they were and that they were harmless. It was a really quick process and at no point did they doubt my word or make me feel like I was wasting their time as he was a baby. The NHS is under strain but it is there for exactly these reasons.

Private neuro appt approx £250-300
Private MRI head approx £400-500 (might charge more for child if needs anaesthetic)
Private EEG a few hundred

I echo others, nothing wrong with going down this route but any concerns video it and go to peads A&E (preferably a tertiary centre where a paeds neurologist may be on site).

Is it just urgent care that have seen him so far? If so make an appointment with your GP to assess him. They can refer to neurology. Otherwise if he has another one or you are worried take him to your local paeds A&E

OP look up the nice guidelines for epilepsy in children this will help you navigate investigations required for epilepsy diagnosis. Dr Martinez in London is excellent although may have a waiting list. In the meantime continue to monitor video and seek further medical assessment locally if any further episodes occur. Also keep a diary of events inc what time, how long, what they did during and what they were doing pre and post this will give a good idea of any patterns or triggers. Most hospitals run a ‘first fit’ paediatric clinic which you should be referred to. Generally a&es are not staffed by paediatricians so would not have experienced the subtleties of how some epilepsies present.
or, your child has learnt to roll their eyes.

Are they doing anything with their arms too? Have you looked into infantile spasms?

There is a useful
Video here.

First book an eye test hugh street optician they will check pressure behind eye so you can at least be sure that that looks ok
Keep taking videos aNd record episodes in a notebook

@Moonmoose
You say 'scary episodes of strange behaviour'
What was this?

Hi everyone - I just wanted to say thanks so much for all these replies. I've not been able to get online much these last few days, but I've been reading when I can and using info from these replies and I will reply properly to you all later today. Just didn't like leaving you all so long without an acknowledgment because you've all been really helpful. Thanks so much x

you need to see dr kinali, some of the symptoms you have mentioned in your initial post, sounds like PANS/PANDAS, she will refer you to an immunologist who will do thorough checks to diagnose this. Good luck!