Should we push for MRI scan?

[girlie1]

Hi, I started a thread on epilepsy a while back and many people responded which helped a great deal. On a recommendation, for which we were very grateful, we went to see Nick Cavanagh about our 4 year old dd who has odd turns - arms move up and about in strange way, facial jerking/grimacing, unresponsiveness. Nothing has been picked up on 2 eeg's and we are waiting for a 24 hour ambulatory one. Other than these brief episodes which are mostly up to about 4/6 a day but sometimes less or alot more if tired she is very well, very bright, developmentally fine. Dr C checked her very thoroughly and was reassuring in that he does not think it's anything sinister and did not recommend an MRI but rather the 24 hour monitoring. He even suggested it may be a behavioural mannerism thing and in quiet times she often does talk to herself alot, wandering around excitedly/manically ignoring us which is usually accompanied by the odd hand movments - although sometimes these just happen anyway. Afterwards she tells us she is dreaming or talking to her friends.
Our dilemma is the worry of it being something sinister and whether we should just go for a private MRI and get it over with. My sister a former nurse is really pushing us to do this. Our local hospital paed is offering for us to go on a waiting list. We just hate the thought of a GA. She is such a good girl when having tests/jabs etc that we wonder whether she could have it without the GA, or whether we should be considering putting her through it when the expert is not saying its necessary.
Any thoughts or advice on any of this greatly appreciated.
Thanks so much.

MRI scans are very noisy and claustrophobic so no matter how good your dd is with jabs etc she may well find an MRI very scary, esp as she will have to stay perfectly still.

My girls are 5, one had one done when she was 8 months old but no way would they have one done now unless they were heavily sedated!!

very loud and in a small space

I had an MRI at 28, and I found it off putting even then. You can not move at all -- otherwise scan isn't worth it. My muscles went into spasms and they almost had to halt it. Would suspect that they wouldn't do it with a GA.

I don't want to worry you, but DS2, who has a brain tumour, was diagnosed with 'breath-holding' by 2 GPs, had two pointless eegs and the paed was just content to wait on the waiting list for an MMR until we pushed. His seizures began with funny turns, similar to the ones you describe. 4/6 a day is a lot. DS was develpomentally bright too, so no other signs. An MMR will clear everything up, so keep pushing for one. No need to pay - just visit the bejasus out of your GP and specialist until they put you on urgent. It may not be anything sinister, but best to find out instead of worrying about it.

As for putting her through a general - we have to have scans every few months, so DS has had loads. It's hard at first, but worth it, and your dd may only need the one.
hth

Hi Droile thanks for your message and am so sorry to hear about your son. I hope things are ok at the moment, what a terrible thing for you all.
I am really in a real quandry as for almost 2 weeks we have had practically no turns - some days with none at all. I am going to contact the paed tomorrow as we are waiting for results of blood/urine tests but perhaps we are just being lulled in to a false sense of security by this less worrying period we are going through.
Did you ever have these lulls?
Anyhow, I do hope things improve for you all.

If you go for MRI definately get GA. DS 5 had one without earlier this year and although he was very good moved too much and it was useless, we are now facing the prospect of another one in the future.

I've had 2 and I really wouldn't have a 5 year old have one without a GA. loud, scarey and - most of all- lonely

I would do what you need to to get peace of mind (rule out everything), but also consider Tourettes. Her movements sound quite similar to a lot of ds1's (who does have Tourette's)

(BTW to check out Tourette's you would need to see a developmental paed).

Thanks for the messages. Bizzarely we have no episodes at the moment and no oddness. She has never had headaches or sickness or anything like that and is always well. It began last year then went away, then came back again.
We are awaiting a 24 hour eeg then if that is neg and we are having episodes will get the MRI but we have considered Tourettes. Fortunately our paed and GP are taking it seriously. The specialist Neuro Paed doesn't feel the need for an MRI having spent almost an hour checking her over so I am encouraged by that but obviously will push for everything to be done to put or minds at rest.
Anyone else had these symtpms coming and going?

girlie, yes, we did/do have occassional lulls