Re: Henry update: Scotson, epilepsy investigation

[Guest guest]

Please, does anyone have a view re the dafety/advisability of sedation vs

general anaesthetic for the MRI? My concerns are:

Sedation can require use of an excessive dose with our children;

How the heck to get an iv line into a highly resistant 11 1/2 year old?;

Which sedative drugs/anaesthetic drugs are the best/worst?;

I don't want to have to have repeated attempts at the MRI and EEG because the

hospital hadn't properly taken account of his autism;

The reason they aren't considering a GA is that this hospital doesn't have the

facilities to give a GA for an MRI (unlike, for example, the Chelsea and

Westminster, where last time they decided not to dsedate because of a previous

response to sedation, but used a GA);

Ditto the EEG: no overnight EEG, no video telemetry because the hospital lacks

the facilities. Sleep EEG failed because they wanted to do it in the afternoon

and only gave 2mg melatonin. So they want to do a waking EEG (Henry's sezires

are all at night) in the afternoon, with no melatonin. How are they going to get

the leads on him when they failed the first time?

Margaret

>

> I'm off to East Grinstead on Monday to learn the first set of Scotson Therapy

exercises.

>

> Saw the neuro this week: they will have another go at a day time non-sleep EEG

- no melatonin.

> They will test his urine for the marker for Pyridoxine Dependency.

> They will order an MRI. They want to use IV sedation for this - I am not happy

about sedation as he has previously taken an inordinately long time to come

round properly from it. The last time he went for an MRI at the C & W they decided

on a GA instead of sedation. However Addenbrooke's can't offer a GA with an MRI

- they don't have the facility for this.

> The neuro said that while he was sedated they would also do a lumber puncture

- I'm not sure why.

>

> As they will be getting a CSF sample, I wondered what they ought to test for.

Obviously I don't want them going back for another go later. Should they do a

full metabolic screen? I am wondering what to suggest.

>

> They also said there might be some genetic testing - they have links to the

Human Genome research project at Hinxton near Cambridge and we might tie into

this. Now I think this might be very useful, even if they can't yet interpret

what they find, am I right once they've looked at his genome we could have the

data already there which could be reexamined as scientific knowledge advances. I

wondered what markers re autism and epilepsy they could look at, also whether

people whose biomed approach is influenced by genetic marker results would

recommend, please?

>

> My main concern is the lumbar puncture - that it not be done unless necessary

and that we get the maximum information from it. Also not happy about IV

sedation...

>

> Margaret

>

[Guest guest]

Hi Margaret.. whilst I cannot advise on best sedation, I know that Helios advised us to get a couple of remedies.. one we gave before sedation and then another for a few dAYS after, they helped the body clear the meds more quickly.. Guess another thought is that they put him on an oxygen mask afterwards to assist his metabolism in dealing with this load.

Many thanksTracey

 

Please, does anyone have a view re the dafety/advisability of sedation vs general anaesthetic for the MRI? My concerns are:

Sedation can require use of an excessive dose with our children;

How the heck to get an iv line into a highly resistant 11 1/2 year old?;

Which sedative drugs/anaesthetic drugs are the best/worst?;

I don't want to have to have repeated attempts at the MRI and EEG because the hospital hadn't properly taken account of his autism;

The reason they aren't considering a GA is that this hospital doesn't have the facilities to give a GA for an MRI (unlike, for example, the Chelsea and Westminster, where last time they decided not to dsedate because of a previous response to sedation, but used a GA);

Ditto the EEG: no overnight EEG, no video telemetry because the hospital lacks the facilities. Sleep EEG failed because they wanted to do it in the afternoon and only gave 2mg melatonin. So they want to do a waking EEG (Henry's sezires are all at night) in the afternoon, with no melatonin. How are they going to get the leads on him when they failed the first time?

Margaret

>

> I'm off to East Grinstead on Monday to learn the first set of Scotson Therapy exercises.

>

> Saw the neuro this week: they will have another go at a day time non-sleep EEG - no melatonin.

> They will test his urine for the marker for Pyridoxine Dependency.

> They will order an MRI. They want to use IV sedation for this - I am not happy about sedation as he has previously taken an inordinately long time to come round properly from it. The last time he went for an MRI at the C & W they decided on a GA instead of sedation. However Addenbrooke's can't offer a GA with an MRI - they don't have the facility for this.

> The neuro said that while he was sedated they would also do a lumber puncture - I'm not sure why.

>

> As they will be getting a CSF sample, I wondered what they ought to test for. Obviously I don't want them going back for another go later. Should they do a full metabolic screen? I am wondering what to suggest.

>

> They also said there might be some genetic testing - they have links to the Human Genome research project at Hinxton near Cambridge and we might tie into this. Now I think this might be very useful, even if they can't yet interpret what they find, am I right once they've looked at his genome we could have the data already there which could be reexamined as scientific knowledge advances. I wondered what markers re autism and epilepsy they could look at, also whether people whose biomed approach is influenced by genetic marker results would recommend, please?

>

> My main concern is the lumbar puncture - that it not be done unless necessary and that we get the maximum information from it. Also not happy about IV sedation...

>

> Margaret

>