Help a desperate mum with this NHS question

[Ladyfromthehill]

Posting for traffic.
I have an SEN nonverbal child. A few days ago he developped a very worrying sympton that has massively got worse. We went to A&E, but they sent us out with nothing as it's not 'urgent'.
GP will try to see if we can be referred to pediatrician. Which can take months. It's unbearable to see him like this and we can't wait (last time it took them 7 months to see us).
I am so desperate I am trying to see if we can't be seen by a private neurologist in the meantime to exclude some things (or confirm what diagnostics would be necessary).
Would that exclude us from being able to use NHS? I have been trying to google but havent had a conclusive answer.
I cant afford a fully private treatment/diagnostics as it would costs thousands by the looks of it, but I just want someone who knows something about the area to give us some guidance, and something I can go to GP/pediatrician with.

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

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

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

I am thinking tics, but would like someone to confirm they are not seisures.

Their intensity is just so much... I never knew you can go from zero to all the time, never seen anything like that.

I will have a look at that group, thank you!

Yeah we contacted a few people and none take children, so I learned a lot of new things today. Seems we may be better off looking for a private ped that may specialise in neurology, if such a thing even exists.

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

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.

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, 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.

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.

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).

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.

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

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