MRI under GA/sedation for our 3 1/2 yr old?

[mummypig]

hi there, thought some of you might have some info or experience on this. My ds2 was diagnosed with epilepsy just before Xmas - I posted here a couple of times. He'd been having tonic-clonic and myoclonic seizures. He's now on 5ml (200mg) Sodium Valproate twice a day, which he started on a lower dose about 2 1/2 weeks ago, so it has been ramped up slowly. The seizures appear to be getting under control. He certainly hasn't had any tonic-clonics for a while, although he can go a day without us noticing any myoclonics and then we notice a few of them again.

Anyway... although I'm not really happy with the way we were treated at hospital prior to Xmas (staff seemed more focussed on clearing the ward than dealing with any of our concerns) I'm fairly happy with the diagnosis (idiopathic generalised epilepsy) and the fact that his medication seems to be working. Dp, however, wanted to make sure all possibilities had been considered and discussed, so arranged an appt with a private paediatric neurologist at the Portland, who, while agreeing with the diagnosis, said she would arrange an MRI and ECG and would like to see his EEG.

He would need to be sedated or under GA for the MRI because he hates even the noise from hand-dryers and I can't imagine him lying still under an MRI machine for 45mins to an hour!!

So now I'm not really sure whether the MRI is necessary or whether we're creating an avoidable risk by taking him for an MRI in a private hospital where they might not have people used to administering anaesthetics to kids, and might not have resus equipment to the same level as would be found in a specialist NHS place like St George's, London (where I've heard good things about the paed neurologists, anaesthetists and radiologists).

The EEG didn't show any asymmetry or focuses, by the way, and he doesn't show any developmental delays at all.

So any opinions welcomed.

Thanks for the earlier advice on the school, by the way. I spoke to our SENCO and head right at the start of the term and the SENCO's son used to have epilepsy (now in his 20s and has been off medication and seizure-free for a few years now). Plus the nursery teacher had a child with epilepsy in the class a few years ago and feels confident that she can deal with any seizures - even though it's highly unlikely he'll have any at school. We have a nurse from the local hospital coming to do training next week, and I also flagged up his behaviour, although it seems to have calmed down a bit recently.

I still can't post on the NSE forum, which is why I'm coming back here! Thanks all

The only thing I would suggest, is any time your child has a MRI scan, I would dress them in anything which is metal free (ie tracksuit bottoms and pullover type arangement) therefore they will be able to go down for their scan with their normal clothes on and not have to put pj's on. If you as the parent also dress metal free you will be able to go with them.

I have no idea of the issues for a child with epilepsy having a GA or sedation - but the two are completely different processes. Sedation is a combination of a strong dose of an anti-histamine which makes them v sleepy, and a muscle relaxant. It is administered orally by a nurse, and there are no tubes etc in place. GA is only administered by an anaesthetist. I'm not sure what triggers a decision to use either GA or sedation - DS had an MRI under sedation.

Certainly I would want to know that the anaesthetist was experienced with children, epilepsy etc, and personally I would avoid most procedures in a hospital without access to swift intensive care etc.

Can you discuss it more with the neurologist?

hello, my dd1 had an mri under sedation when she was just 2, she had a liquid orally administered,

i dont think ga is necessary: dd1 was fully asleep all the way through and some time after so didnt know anything about it (she couldn't cope with any noises either, like your ds2

i dont think you're creating unnecessary risk by having mri, you all need to know where you stand so that you can all do your best for him in the future, that's how we felt for dd1 at that time

cant comment on private vs nhs, as we were nhs, however if there are any problems at the private hospital, you are not far from a fully equipped nhs hospital?

all the best with it, whatever you decide

hi, still thinking about this all, thanks for your comments. Not sure how close the private hospitals are from the nearest NHS (we were given two options). But certainly worth knowing the difference between sedation and GA.

thanks

My son(11 yrs old) had an MRI done last November, he went to hospital in his clothes then got changed into pjs when he got there, they put a canular in his arm, he was given the first lot of sedation orally(im told it doesnt taste nice) and then he woke up when they moved him onto the cold trolley he wouldnt settle after the second lot so they gave him a third lot in the canular and he slept through the mri and for an hour and a half after, i was told though that some children get worse the more sedation they are given. The child in the next room to my ds had more sedation than my ds and wouldnt settle at all. Anything else you wanna know if i can help with an answer ask me!!

thanks lottie, i might do that, will be discussing everything with dp tonight

Forgot to say, i went in with my ds for his MRI and it is INCREDIBLY noisy in there, we had to wear earmuffs! My ds is deaf so that part didnt affect him!

Writing in haste, but:

DD1 has had 2 MRIs under GA. It's a lower dose than the sort they would use to cut holes in her, though, and the risk is accordingly lower.

It wasn't a major issue tbh. The big thing is they can't eat or drink beforehand and so wake up not just woozy/queasy but ravenously hungry and mad as a wet hen.

However - check the MRI scanner. While waiting interminably for ours (at St George's and I can confirm they are EXCELLENT and the Radiologist is a genius - detected something no-one else believed in which was clinically confirmed to the astonishment of the other consultants about a year later) we were warned not to go privately as the private scanner locally was a different type and didn't give sufficiently detailed info for diagnosis - our paed knew a family locally who were desparate for results, paid for a private MRI scan and the NHS consultants could do nothing with the info because the data was worthless. So you have to think - who will be actually doing something with the output, and can they confirm the results will be useful to them?

Can't comment on the Portland or wherever you would be going for the scan, (well, OK I can, DD1 was born at the Portland and they discharged her as "healthy" with a genetic condition that most babies die of within 2 weeks) but I have to say this issue is why we have never taken DD1 private - the people with expertise in the areas we needed them were in the NHS and many of them don't take private cases.

Hi, just a quick one as I'm off to bed soon. My dd had an mri just before xmas - she's 22 months. I flapped and lost sleep for weeks but the whole thing was a breeze. I was convinced the sedation wouldn't work and she'd need a GA but they gave her the sedation at around midday and I cuddled her in my arms till she drifted off to sleep. There was another little boy who did need a Ga and again it all went very smoothly. I can't say I know anything about Epilepsy but my dd has Cerebral palsy and they thought it just affected one side of her body but the MRI revealed that in fact both sides are affected, something no doctors would have picked up on. So I know feel that if an MRI is recommended it is probably with good reason, my friend who is a GP said it to me quite frankly 'they cost a lot of money so don't do them unless they think it will really help'.

Best wishes with whatever you decide.

dd had an MRI before Xmas. She has epilepsy and cerebral palsy. It all went fine and the sedative is similar to AED's anyway. Its a very light GA that doesn't require tubes down throat or muscle paralysis like an op would.
No idea about the private vs NHS thing.

not exactly answer to your question, but are you aware of a dietary approach to epilepsy (the exact seisures you mention are listed there)? My friend has just met someone who is doing this and it's working.

w3.ouhsc.edu/neuro/division/cope/ketogen.htm

hi just quickly acknowledging all your responses, dp and I still thinking about it all and haven't booked any private investigations yet. Certainly worth hearing everyone's experiences. Have also heard from other sources that the MRI machines may not be as good if we go private, not sure how we can check that out.

Yes, have heard of the ketogenic diet but was under the impression that it was only used if seizures failed to respond to medication (not ds2's case so far). Certainly worth bearing in mind if necessary later.

Thanks all

Hi Mummypig,

if you are going to a private hospital, I don't think you can do better than the Portland. My son had grommets put in there two months ago, and I would not have trusted any team more. He saw a very professional, experienced consultant ENT surgeon, and a great anaesthetist. The ward nurses were great too.

DS2 was there only as a daycase, and he was admitted to his own private ward at noon, had the op at 2.30pm, we were allowed "out" at 5.30pm.

No dramas.

DS2 has also had an MRI, and he was sedated for that too. It took about an hour, and was only lightly sedated. The worst part was not being allowed to feed him for so long before the op.

Don't worry, the Portland is a fantastic hospital, MRIs are very common, and only a light anaesthetic is used.

All the best,

when my dd had an MRI under GA at 1 year old, we had to wait ages just because we needed a specialist consultant anaethetist in order to administer GA to a child

the GA was the scariest bit (for us as parents) - it would concern me that there was not a member of staff suitably qualified for this

I think a question worth asking your consultant at the Portland is how will an MRI alter management of your child's condition and to clearly specify why he/she feels an MRI is indicated. GA is indicated for a pediatric MRI in most situations to my knowledge and there are risks associated with this. Benefits should outweigh the risks. If you are unhappy ask more questions. Get another opinion if you're still not happy and I would be inclined to if feasible go private within an NHS hospital.

Mummypig, I just thought I'd add my 2p worth.My son had mri under ga at about 31/2 and I am a critical care nurse who has worked in anaesthetics and picu.I understand why it's important to your husband to have the mri. With us I was more for it than my husband. There are some brain problems if you like that can only be seen on mri, and when we were making decisions about schools and other things I felt I really needed to have all the information possible.It was a difficult decision, as Aliway says there are risks however tiny and potential benefits must outweigh the risks. We had a long conversation with our paediatrician about exactly what she would be looking for and the referring hospital he would be sent to.For us the results were helpful and informed decisions we have made since but that may not be true for you. Now with the nursey hat on, first of all there is no such thing as a light anaesthetic, they can be very quick and all but rendering someone unconscious is rendering them unconscious full stop. Paediatric anaesthesia is a specialty, especially in very young children, and who ever does it should do only that.We had the mri done at a well known childrens hospital where we knew that all the team had years of looking after only children and in the event of an emergency the team called would have similar specialist training. Although there are some areas of healthcare where I would and have gone private general anaesthesia for a young child isn't one of them.I know that great ormond street takes private patients so that might be an option. Otherwise you need to ask some questions about the Portland like is it a paediatric anaesthetist?is there a paediatric crash team?are there children's nurses in recovery?Sorry this has been so long, hope it didn't sound like a lecture!