DH and I have decided we don't want DS to have an MRI scan.

[MegaLegs]

I'm fairly confident we have made the right decision.

DS4 will be two 0n the 23rd, he has GDD, hypotonia and hypermobile joints. His hypotonia is improving and he is much stronger, he crawls, climbs and stands now. This morning he climbed up the stairs by himself. At his last developmental test he came out at about 16 months - a huge improvement. His speech is starting to come now and he has a few words and signs. Most importantly he is a happy, bubbly little boy with a great sense of humour and great determination.

Having a DX for his condition will not make the slightest difference to who he is. As long as he continues to progress as he is doing now we will be happy.

The MRI would check for brain damage. It would involve a GA, very low risk these days but still an unecessary one. DH and I both agreed that maybe in the future, if the improvement stops or degenerates, maybe then we'd want further investigations.

Is this the right decision? My only nagging doubt is that perhaps the MRI would reveal a condition that could be treated in some way and we would miss it.

Would be interested to here other experiences of MRI scans and what they revealed.

[magsi]

Megalegs

I admire your and your DS's strength for not feeling the need to have an MRI. Our ds had one at about 7-8 months (he is 5 now). He has a sever right sided hemiplegia and has done nothing but improve and grow into a lovely confident gutsy little boy . I am trying to think of the benefits of having the MRI. I suppose thinking back to the time, it was not very pleasant and the images of the sections of his brain put on the wall by his paed like x-rays I will never forget. To be honest I can't remember much about the GA, but the scan lasted about 30 mins. We were allowed to sit in the room with him in the machine while it made noises like something out of close encounters!.
If I think about it, all the scan did was show which parts of the brain were damaged. Of course at the time we were asking questions like will he be able to walk, talk etc., but the paed couldn't really give us definite answers.
I think if ever you were to apply for a Statement of Educational Needs in the future, it requires reports from all the professionals who work with your child. I don't know how not having an MRI would affect this, but I would have thought it would not. After all it is not a compulsory thing is it.
As far as your nagging doubts of any condition being treatable if spotted, I doubt very much if anything resulting from brain damage can be directly 'treated'. It is the body that sees the results of brain damage and the physical things are treated I suppose with physio etc. and speech therapy or whatever is needed. We were told at the time when talking about his scan showing about one-quarter of his brain missing that it might re-route itself somewhat as ds grew up. Very hard to understand at the time and very shocking. I can't help feeling that ds's pure strength of character and determination every day helps him to overcome the physical disabilities he has. Your DS sounds lovely and strong willed aswell.
Having an MRI does not necessarily show anything at all sometimes either.
You both sound like you have made your decision and I think you are right in what you have decided, that if you think one is necessary in the future, you will have one.

Trust your instincts

[2shoes]

dd had a mri when she was very small. she went to RACH and then was taken to the RSCH by ambulance(at least you wouldn't have to do that) tbh it was all fine. she didn't know anything about it.
It did help though as it is unlikely that we will have to have another one done. they could then tell where the damage was...
(how are you by the way. are you coming to the meet up?)

[MegaLegs]

Thanks Magsi.

I still have to talk about our decision with DS's very lovely consultant at the CDC. She might try and change our mind, but I know she has DS4's best imterests at heart. He's also due to see the neurologist for a second time later this summer, we willsee what he thinks too.

[MegaLegs]

(Hi 2shoes - yes still hoping to make the meet up - it's DS4's 2nd birthday the day before with friends round for a bbq so I'll do my best to not be too hungover )

It's really hard - I think the crux of it is that he is goingthrough such an amazing stage and has made so much progress developmentally it makes me think his SN might not be as severe as we first thought.

[mymatemax]

Hi megalegs, we came to the same decision as you for similar reasons, he has still had all the therapies & support etc so until recently we have felt OK with the decision but as he has got older other development & behavioural problems have emerged & I think we are going to ask for the MRI now just to see if it can shed any light.
But i'm not sure how useful or accurate they are as i've read so much conflicting info.

[MegaLegs]

mymatemax - see I wondered about the usefulness of it. Yes they could tell us if part of his brain is damaged but then what? We too continue to use all the therapies and support the CDC provide and it's brilliant to see the results.

[mymatemax]

DS'S Paed after we had declined the MRI said in her opinion they were good & usually accurate for building up a history/explaining a cause (eg bleed etc) but not always an accurate tool for predicting the future. 3 years later i'm still confused!

[Blu]

Megalegs - of course it's your decision, and you know whether they are testing for something definite or 'just for a look'. (but they are v v expensive, so they probably do feel it's worth it).

Anyway, just to say that DS had an MRI and it wasn't a daunting procedure at all. In fact they didn't 'knock him out' with a GA, they used sedation. He was completely asleep, but as it is administered orally by a nurse, and doesn't need breathing stuff, oxygen etc, it bypasses the complication of a GA. And anyway, as someone else posted on another 'should I, shouldn't I' thread about MRI, GA's are very much tailored to the procedure, and a GA for a short non-surgical procedure like MRI is probably a lot more minimal that a full operation GA. But I don't know anything about GAs, really, so best to ask all this. DS has had 4 GAs , all around about the age of 10-15 months, and he was fine. One only lasted about 30 mins - about the same amunt of time for an MRI, I guess.

The MRI did enable the consultant to find things out about DS's leg, even though he has been X-rayed lots regularly since birth, and she has done an operation and seen the way his bones are. But the MRI revealed things that have revised her view of a certian operation she was wondering about.

If my DS had a condition that I wasn't absolutely sure of the cause for, my personal decision would be to have an MRI...but your decision is yours!

[MegaLegs]

I am waivering now. FioFio you might be right about me being fearful of what an MRI might reveal. but then on the other hand my gut feeling is that he is ok, he is developing, albeit slowly, but he is making progress so should we just leave it a little longer. Was the MRI your dd had helpful? Did it reveal more about her condition, because that's what would make me change my mind.

Blu - I have days when I think "he's fine, he'll get there we are doing all we can for him, why distress him with another hospital visit?" but I guess I'd be kicking myself if we miss something that would have been diagnosed by the MRI

I think I need to talk to the specialists again and find out just what they are looking for with the mri and how imortant they feel it is (although it's obviously not that urgent as we have been waiting for an appointment since Feb!)

Thank you, you are all definately giving us lots to consider.

[alycat]

Hi Megalegs,

I'm newish here and mostly just lurk. I'm not trying to influence you at all, as like others I have huge admiration for your strength in not pushing for all manner of tests.

My ds is now 2yrs 10mths, he walked at 23 mths and still has few words/signs. He has GDD, hypotonia, some clinical things that point to genetic problems although all general tests have inconclusive.

I was convinced he had CP (serious birth complications, apgar of 4, taken out of scbu too early due to bed shortage - suffered a major collapse and readmitted etc)

He had an brain mri recently under light GA and they discovered, much to their amazement, that he has an incredibly rare genetic disorder called Arterial Tortuosity Syndrome (ATS)he is now being tested for Larsen's (connective disorder) and Menkes (metabolic)they cannot even give us a prognosis.

The reasons we went ahead were many, including guilt and despair (I have a pituitary condition - did I cause it?) once they started talking about genetic problems, was for more info for our dd - I know her having children is a long way off, but I wanted to be prepared - also we had always intended having a large family and as much as I adore my DS I feel that having another child with SN would put too much strain on our family - especially our 7 yr old dd who harldy gets a look in nowadays

I wish you all the best with whatever you decide, as you say it is not essential and if you change your mind in future it can be done at a later date.

[r3dh3d]

DD1 had 2 MRIs, both under GA - at 1 year spot and 2 years spot. Neither affected her at all.

The first was a bit inconclusive; we knew at that point she had galactosaemia (genetic/metabolic) which might affect myelination but that sort of thing doesn't mean a lot on a scan done so young. The second showed a) that she definitely had Hemimegalencephaly so might benefit from removing that half of the brain but b) also had mesiotemporal sclerosis on the other side, so maybe best not to!

None of this has thrown up any "cure" or even much therapy, though having the diagnoses does help a bit when arguing the toss if she needs this or that. What it has done is given me a benchmark for her progress and a better understanding of where she may be going. Also a partial (if not complete) explanation of her difficulties means you aren't always wondering if there is something else - they were talking about some of the faster demyelinating disorders at one point in which case we wouldn't be buying clothes thinking "she'll grow into them" iyswim.

[gracej]

DS had a brain scan (privatqqely) at 12 months and in our case it was the best thing we ever did because it proved that he actually did have a problem (rather than the wait and see attitude of the consultants).
He is progressing slowly but surely. We now live in another country and the neurologist here asked us to have another more detailed scan to assess the possibility of seizures(sorry the spelling) in the future and to try to understand more about how the problem happened in order to make decisions about language therapy for DS.
According to the neurologist here, the nature of the problem does have an impact on some areas of therapy.
I believe the more you know about your child's condition the better.
Also, you don't know what problems may surface in the future.
I admire your acceptance of your little one's problem, in my case, I would really love to know what went wrong. I am hoping this second MRI wil give some answers.

[Arabica]

Hi Megalegs. DD, 10 months (GDD, hypotonia) is having her MRI under sedation on Tuesday and I think I can understand a little about how you feel. DD has also been makimg amazing progress; she's trying her hardest to be mobile and has even done a commando-crawl. We feel really positive and proud of all she has achieved and to get anything less than a totally positive report from the scan would be almost too awful to bear. About 6 weeks ago she was supposed to have the scan but at the last minute, her neurologist decided her nose was oo blocked to cope with sedation, so we went home. Couldn't work out whether I was disappointed or relieved. Probably both. But on balance I think it will be best for her if she does have another MRI--the need to get a diagnosis is just to great!

[Arabica]

Good luck whatever you decided.

[MegaLegs]

We have just had the report back from his last assessment at the CDC. Quite positive as all the proffessionals have remarked on his progress developmentally. Had a brief talk with cons.paed and she is recommending he has the MRI even if it's only to rule out possible probs. Also when he is under the GA they can take bloods as he hasn't had a successful blood test yet due to tricky veins.

I want to do everything possible to help him but I am also scared of the GA (DS1 had an op last autumn and seeing him being put under and then waiting fir him to come round was dreadful, I know that is what is making me hesitant)but I know I need to step away and let them do what's best for DS.

Thank you all for the positive comments.

[mrsdarcy]

My DD (now almost 2) had an MRI when she was v small, but not under GA. They took us into a dimly-lit room and gave us as much tme as we needed to get her asleep. I can appreciate that that is much harder to manage with a 2 year old.

The MRI confirmed a diagnosis that had been made when I was pregnant - agenesis of the corpus collosum but no other abnormalities.

I was glad to have it done as we were on a pretty structured treadmill of investigations and I felt that it completed the picture for us. I also wanted to have a complete file on her so that if she needed help in the future our starting point was further along the line and it would be easier/quicker to get referrals. I also thought that it would be easier to have the MRI when things were looking pretty positive for her and we could just view it a continuation of our ante-natal care. I imagine it is much more stressful to arrange and wait for these appointments when you are worried that there is a problem that needs investigating, iwswim.

On the other hand, I can sympathise with your wish to docus on your child as an individual rather than a particular label.

Hello Arabica . I have been wondering how your DD is. I'm delighted that she is doing so well.

[Arabica]

Hello mrsdarcy (waves)
Megalegs, have you got a date for the MRI, or do you have to wait for it to be sent to you? DD's had to be cancelled yet again as she's got a urinary tract infection. So we're waiting for a new date.

[Aloha]

Oh Arabica, that's lovely news! (re the crawling & progress) V happy for you - well done your dd