MRI SCAN - should we do it?

[twotimestrouble]

Has anyone with a little one put them under a general for an MRI scan??

My DS has seen a number of consultants over his poor walking and running. They say he is double jointed wihich means his hips turn in 80% of the time, rather than out, as they should do. However, they all seem to agree that this doesn't explain why he falls over whenever he runs (and half the time he walks)and why he has no stamina - they say it must be neurological. So we've been asked to put him forward for an MRI. But I have reservations. Even if they find something, I don't think they can 'cure' it so why bother? What do other MNs feel? I really don't want to put him through a general anaesthetic unnecessarily.

How old is your DS, twotimestrouble?
My DS had an MRI when he was 4, and didn't need to be sedated at all - the staff were fantastic with him.

He is 3 and a half. I don't know that I could get him to lie still for 5 minutes let alone 15 though.

Twotimes - personally, I would go for the MRI to find out the cause, even if there was no "cure". I think it would give you some kind of "closure" on why it's happening and let you get on with how to deal with it. MRIs do not emit radiation (IIRC) but of course no-one wants the potential hazards of the GA needlessly.

It might be worth speaking to the staff in the MRI unit directly.
We thought DS would at least have to be sedated - he had tremors at the time, but they said they would try without medication first.
They took him in and showed him the machine, put his favourite music on, let me lie in it first to show him.
Then he got in, they started the scans, and he lay perfectly still and followed all their requests.
I stood at the side of him, feeling a bit like a spare part, and stroking his leg now and again.
I had been dreading it, but it really was a great experience - they even let him look at the scans of his brain afterwards.

HC, I think my DS would be frightened, he's very nervous about things he doesn't understand. I wonder if they would let me try without the GA. I agree with you CTA, I would like to understand what's going on but it is my curiosity that will be satisfied because even the consultants say they think there is little they can realistically do. Why did your DS need an MRI Humphrey?

Does anyone have experience of a GA for such a young one?

He had quite extreme hand tremors and he kept falling over quite a bit, as well as having very high temperatures/borderline febrile convulsions on a fairly regular basis.
MRI found no neurological damage or abnormalities, and they confirmed an earlier diagnosis of dyspraxia.
The tremors were diagnosed as being benign intention tremors and they said they thought he'd grow out of them. He hasn't yet, but they are less noticeable.

HI,

My son had an MRI at 6 months under a general. He had one to try and find an underlying cause for his seizures. It wasnt a pleasurable experience for me seeing him knocked out and having to starve him but it was able to give me some answers....!

TTT - we had a genetic test done for DS when we thought 99.99% it was just to rule things out and "prove" he didn't have it. He's deaf and the test was for a specific mutation called connexin 26. We didn't chase up the results, we were so convinced and uninterested. Well, they came back positive many months later. About 4% of the population are carriers, turns out both DH and I are. My family is huge (14 uncles/aunts in my parents' generation, dozens of cousins my generation, dozens of children my DS's generation) but none of them are deaf. Similar but smaller scale in Dh's case. Yet, without this, we would have always wondered why DS is deaf. He needed blood taking which isn't on the same scale as an MRI, obviously. I suppose in our case we knew the result would be either yes or no, very definitive. It helped us close the chapter on "why DS?", even if not on "why us?". As prognosis it helped me to know that the condition is stable and not associated with anything else. That was a huge relief, eg that his eyesight would not be affected. I think it helped us enormously to cope with the diagnosis and have hope for his future. You are in the best position to know what kind of answers and MRI would give and whether the risk of the GA is worth taking.

Ds2 had MRI at 1.3yrs. They gave him medication to send him to sleep and eventually he did. He slept thro MRI and woke up right as rain after. I would say go for it. No long term effects I dont think, and it may help so much in diagnosis

I forgot to mention that DS had a CT scan at about the same age. He also needed GA for it. He also had GA for something as trivial as ear wax removal at about 9 months old

Lourobert - love your pics. Your LO is a really sweetie! Just wondeed if they found the cause for his seizures (if not asking you too personal a question) as we have never had a reason given. Sorry for hijack twotimestrouble

We turned down the opportunity for a MRI with ds2. At the time we felt it wouldn't change teh outcome, we know he has CP & its associated with his prem birth & because of chronic lung disease didn't want to risk a GA.
However as he as got older & other behvioral problems have emerged I wonder what that MRI would show, it may perhaps help some of the professionals target some treatment/therapy rather than just wait & see.

Thanks everyone , I feel a bit more positive about it now, especially since a few of you have had positive experiences. I would like to get it resolved because we have had several "it may be this/it may be that"s from differing consultants. It's so difficult when your child is not 'right' and you don't know which way to turn.

My DS had a GA for an MRI just recently around his six-month mark.

I was very nervous about the GA (less so about the actual MRI), but the worst part was not being able to feed him from about 2.30am on the morning of the MRI.

The staff at our local hospital were fantastic, I got the feeling it was all very routine for them (DS was one of about 3 children also having scans on the day), but they were very very careful and explained it all to me.

DS was out to it for just over an hour, but when he woke up you would not have known anything had happened.

Happily for us we got the MRI results yesterday, and they did come back all clear which was huge relief, but the GA and MRI were all actually non-events in the end!

Good luck,

DS had 4 GAs between 10 months and 14 months (for surgery) and an MRI under sedation when he was 4.

DS was absolutely fine after his GAs - anaesthesia is very spohisticated these days, they come round quickly, he would be 'out' for a v short space of time - if in fact they used a GA rather than sedation. The sedation for the MRI was a mix of strong anti-histamine and something else - muscle relaxant, I think, and it is given orally. Anyway, he was at school bright as a button the very next day. There's a big difference between GA and sedation - even though sedation does send them to sleep - they aren't aware of the procedure. Are you sure they would use a GA? It's more complicated and means they need an aneasthetist, whereas sedation is administered by a nurse.

In your position, I would definitely go for an MRI - if they can pinpoint the cause, they are much more likely to be able to set up effective interventions - even simple excercises or strategies. And you never know - maybe an answer.

I'm so glad I posted because you've all been so helpful. Blu, no one has even mentioned that he could be sedated rather than have a GA.

The (private) consultant we saw last week made a GA sound as if it was life threatening the way he was going on (even though I know I had one at about 4 in the early 70s when they probably weren't as sophisticated). So I'm heartened that so many people have seen no side effects in their DCs with them.

Am going to ask about options now.

Hi twotimestrouble. DD (10m) will be having her second MRI on 26 June; this will be under sedation, rather than GA. It wears off very quickly so it's obviously the preferable option. I wonder why your hospital didn't mention it?

I am confused about the difference between sedation and a GA - a pp said that a GA must be administered by an anesthetist, and that a nurse can sedate a patient, but what does sedation entail?

My six-month old had a GA, via a gas mask, that was administered by an anesthetist. It did wear off very quickly.

Thx,

In our case, sedation of DS involved two normal medicine syringes of drugs - one of which I know was an anti-histamine. Basically it is like a very strong sleeping tablet - they go whoozy slowly and fall asleep and floppy, and then slowly wake up a couple of hours later. In fact, DS was v hard to wak and slept for a v long time and gave me a bit of a fright, but in the end it was harmless.

I couldn't tell you technically / medically how this 'being asleep' differs from a GA - but in 'our' hospital, they do start with gas for little ones, because the canula for the IV aneasthetic drugs can be v hard to insert. OUr aneasthetist explained to us that they wuld use gas first - it takes about 10 seconds, if that, for the gas to knock the child out. then they take them into theatre and put in the canula as well as maintaining a mask etc. In each case, DS came back with attempted canula sitings in both hands and ankles, and every time, the canula had eventually been put in his neck. (this is not usually a probelm in children older than small toddlers - don't worry! And they use numbing cream in the canula site) hence the advisable us of the gas first - imo. In fact, one time, the aneasthetist said he was going to start with a canula. As it was my 3rd time in, i stood my ground and refused, and said i would take DS back out if he attempted the canula before using gas. this caused a big flurry, and they had to wait for a 2nd aneasthetist to arrive. A nurse explained that in that hospital it is protocol for 2 aneasthetsists to be present if using gas first - this is because if there is a reaction, it is the iv drugs administered through canula that are the urgently required ones. The best aneasthetist we had didn't even start by putting the mask over DS's face - she took the mask off the pipe and waved it under DS's nose so that he started to breathe in the gas naturally. (so did i - you can feel the effect!!). When he started to go a bit whoozy, she put the mask on and he was out in no time, witout a struggle.
They do struggle at the mask - but truly, it takes about 5 secs for the effect to work - and the more they struggle the quicker it works because they are using more breath

Sorry - long post - the full unexpurgated Blu Experience of Aneasthesia and sedation for anyone thinking about it!

Hi twotimes.., have you come across research that neurological symptoms can be caused by gluten sensitivity?
We were told for over a decade that there was nothing that could be done about my son's obvious neurological (and other) symptoms (not far off yours - except for hypermobility - although I believe that can also be linked). I refused to give up looking for answers. Never had MRI, exactly for the reasons you mentioned.
After 12 years, I found one amazing neurologist and an answer in the diet, most of the motor symptoms went away, but beware, severe damage cannot be undone.

Have a look at the links below, this stuff turned my world around (scroll down to Neurological Manifestations).
Maybe this can help you too? For me, the proof was in the terrific response to the diet - remember, gluten sensitivity has NO food symptoms, I found this hard (well, impossible!) to believe at first - until I saw the improvement.
If you do have MRI, then you might even find more clues in the links, becuase some of them talk about calcifications in parts of the brain, enlarged brain ventricles and so on.
Good luck whatever you decide, but don't give up on finding the answer.

Hi twotimes.., have you come across research that neurological symptoms can be caused by gluten sensitivity?
We were told for over a decade that there was nothing that could be done about my son's obvious neurological (and other) symptoms (not far off yours - except for hypermobility - although I believe that can also be linked). I refused to give up looking for answers. Never had MRI, exactly for the reasons you mentioned.
After 12 years, I found one amazing neurologist and an answer in the diet, most of the motor symptoms went away, but beware, severe damage cannot be undone.

Have a look at the links below, this stuff turned my world around (scroll down to Neurological Manifestations).
Maybe this can help you too? For me, the proof was in the terrific response to the diet - remember, gluten sensitivity has NO food symptoms, I found this hard (well, impossible!) to believe at first - until I saw the improvement.
If you do have MRI, then you might even find more clues in the links, becuase some of them talk about calcifications in parts of the brain, enlarged brain ventricles and so on.
Good luck whatever you decide, but don't give up on finding the answer.

jccglutenfree.googlepages.com/

DD1 has had 2 MRIs under GA - at 1 year spot and two years spot. I think not all GAs are created equal: because this just has to hold them still, they don't use as much as if they were doing surgery and the risks are proportionally reduced. Both times, you wouldn't know she had been under once she came out - apart from the ravening hunger. [wink}.