MRI result - help?

[JoMaman]

ds1 had a MRI last year following detection of a chromosomal imbalance, following his dx of autism.

We got the results back as 'brain looks slightly immature but this is what we expect from developmentally delayed children - the good news is no abnormalities.'

I requested the actual images as I felt ds1 had gone through a big deal to get them and if we ever wanted a 2nd opinion etc...

Upon re-reading the results the doctor (who is geneticist not neurologist) wrote to us saying that she had over-simplified the results and there is actually an abnormality, but not a specific one (I guess that means one with a name/disorder attached?).

Feel like I am having an out of body experience, am just sitting here in shock.... want to see if anyone on here has experience of 'complex cortical folding on interior surface of both temporal lobes' and also am I within my rights to now ask to be referred to a neurologist about this? I presume that nobody will be able to do anything about the abnormality but I think having it explained to us and having the opportunity to ask questions would be helpful (as was the case with his genetic problem).

Grateful of any experiences :(

How worrying and unsettling for you Not helped by the sloppy communication from the clinician either I think you are well within your rights to ask for a consultation with a Neurologist. It's natural that you will want to ask questions about the condition and prognosis. Hope you get some answers soon.

Sorry I can't offer any experience but couldn't read and run.

I think you have every right to see a neurologist and possibly not just a run-of-the-mill neurologist either. if you son has an abnormality for which they cannot identify a cause I would ask for a referral to somewhere like great Ormond Street. You have a right to be given all possible information about your son's condition so that you can give him the best care and support possible.

I hope someone else comes along soon who can share some reassuring experience.

thanks. just needed an outlet for this as don't want to tell dh till he gets home or my mum as they will be upset. this is the second time I've had a 'false all clear' wrt ds1's problems, same situation as this, if i hadn't dug a bit deeper the real result would have never surfaced :(

I know how you feel (to some extent). My dd was given the all clear by two paediatricians. Now we've just found out (via two private Physio therapists) that she has Cerebral Palsy It will be hard for us have any faith in medics now.

I find it very hard to understand why anyone would hide something like that. It just makes you distrust them in the future.

Not being able to treat a condition isn't a reason not to tell parents. We need information in order to know how best to support our children.

I used to feel bad about being pushy and making sure I was involved in decisions about my DCs but I'm over that now. Don't let anyone fob you off because you're never going to relax until you feel that you have all the available answers.

The geneticist would not have interpreted the MRI herself, at least I'm pretty sure not, but it would have been looked at by the consultant radiologist. The results then going back to the geneticist, explaining the abnormality and the possible implications. You are right in assuming that a neurologist is the person to explain to you the implications of the abnormal findings and I would ask for a neurological review. Sometimes it does help just to have answers. They won't change things but sometimes mums have illogical feelings of guilt having a SN child and it may give you some control over a situation which has left you so shocked.

you may find that a neurologist has reviewed the scan already and decided that it didn't merit an appointment, happened with dd3 and her mri showed all sorts of issues, including folding. But that doesn't excuse the fact they should have told you, at least dd3s geneticist went through it all with us.

Hi Jomaman

So sorry things are panning out like this, makes a difficult time all the more to handle.

My little one had an MRI very early on whilst he was still in the special care baby unit. The Paed on duty said the results were not good. The lack of folding showed an immature brain. However when a neurologist looked at the results, he told us they were normal.

So please, push for a referral, even experts can only be an expert in their own field. Given the conflicting info you've been given, it's only fair this is reviewed by a specialist.

I always ALWAYS ask for copies of our med results and have also found things that were dismissed as not significant, but subsequently proved to be significant. I think if the level of severity is not major, you are likely to get "false" normal.

In your case OP, I would ask for an appt even if only for the reason of explanation of the features and likely prognosis. However, I would try and find an expert in autism/neuro (rather than previous dr) and be referred there, this might give you more meaningful result.

Hi Don't know if it is of any use or if you have found our via google, but the cortex is the outer 'layer' of the brain that you can see on a whole brain. The cortex isIt is naturally folded but it would appear in this case more so than normal. The temporal lobe is the parts sort of from behind the ear going backwards towards the back of the brain. It is an area of the brain often associated with hearing and speech - depends exactly which part.

Anyhow, enough of the science, I doubt it will make you feel any better but my aunty is actually missing almost half her brain, but it was never realised (no learning delay or any other problem) until she had brain scans in her 40s as she started fainting lots. So it may be absolutely no issue at all just the way your DS is.

I'd def get someone to talk to about it though.

Thanks all for the replies :)

I spent yesterday pm on the phone trying to speak to someone about a referral to no avail, so will have to try again today.

In the meantime I'm trying not to google or panic as it won't do any good.

LittleMissGreen - how shocking about your aunty - the human body is indeed very bizarre. I recently read Norman Doidge's book The Brain That Changes Itself, which was a real eye-opener.

I'm sorry. My faith in medics is pretty much shattered now. How long did it take to get ur results back? I been waiting 2 months now!!

sorry to hear you've been waiting so long. I think it was 3 weeks or so but have had long waits in the past and it is agony - really feel for you

Yeh they told us he might die in childhood if his problems are neuro degenerate as well as asd then make us wait lol. Mind you it's agony however long it is. I can't imagine the roller coaster you feel being given false all clears

JoM, I don't think you need to worry too much but I do think you need to have it explained from all angles.
The brain can recover and create new circuits, it's apparently no longer regarded that new brain cells cannot be created during lifetime, the brain can regenerate to some extent otherwise learning wouldn't be possible.

thanks nightcat, yes the Norman Doidge book is about neuroplasticity and I sort of feel like I'd like to speak to a neuro to see if there is anything that I can do to help 'repair' the pathways affected by the abnormality, although I'm sure nothing is that simple. It does seem from the book that a lot of the science around this is quite new, and cutting edge treatments are being devised all the time.

I am going to try and get my hands on that book too thank you for mentioning it :)
I do think that a sensible stimulation eg skin brushing/retained reflexes treatments etc have a place, but it's a bit of a hit-and-miss affair where to find them and whether they are suitable. I am also fascinated by left vs right brain as my ds is slightly lopsided and it's amazing how much can be deduced from observation. In my case I am working on my ds as and when it feels right.

Nightcat if DS sit lopsided try to encourage him to be as upright as possible. DGS has CP so a bit of a different issue, but he favours his left hand, and tends to lean his head to the right and look out of his left eye! The physio said doing this will compound the left side dominance, and could reach a point where his right eye would be in effect 'blind'. The vision would be perfect but that side of the brain just not wired in, so in effect blind!

Also they must 'cross the midline'. The left hand reaches across the body to the other side, and vice versa otherwise the brain doesnt realise the other side is actually there! Its complicated but about wiring, the neuroplasticity is about wiring and not allowing bad movements to over ride normal ones. All you need to do to get the left side of the brain to 'talk' to the otherside is make each side 'aware' of the other. Easily said!!!

From Therapy Street Website
Being able to cross the midline (an imaginary line down
the center of the body) is an important developmental
skill. It is needed for reading and writing, for being
able to reach toward your foot to put on a shoe and sock
with both hands, for participating in many sports and many other day
to day activities. Children who have difficulty reaching across their
middle may actually get stuck in mid-reach and have to switch hands.

Or they may compensate by turning their trunk to reach toward the
opposite side. Poor midline crossing also makes it difficult to visually
track a moving object from one side to the other or to fully track
from left to right when reading.

thank you sneezecake, have been trying with the mid-line, in fact he used to start writing from mid-page, so that was when I realised he couldn't "see" the other half :o took a while, better now, but still not keen to use left hand for obvious things and compensates with right, but motor skills slightly better overall
fascinating stuff, but he is resistant to venture into left side, so will carry on trying

We are in the same position with the other hand. So much to learn about! As you say carry on. DGS now sits much straighter us having hoiked his head centrally so many times and will hand something to DD across his midline. Only just getting the hang of scribbling - difficult when arms worse affected, cant ever see handwriting coming but thats why there are computers!

We did "lazy 8" on large sheets of paper in the past and also playing/throwing sandbags/balls. Knowing what I know (and my ds is a teen now) I do regret getting a baby walker as the fine motor movements evolve from gross ones and as he always wanted to be upright from the tiniest baby, we didn't force him back on the floor, so had to rebuild some of the actions (cross crawl etc) when much older. Hindsight..

Nightcat - we have been so lucky to get the book here
It explains exactly how important crawling is regarding fine motor skills, hence we are getting him (hand over hand) to reciprocal crawl! Even though DGS is 2 1/2 nearly we are doing it alongside walking in his gait trainer. Baby walkers are frowned on today even with NT children as it encourages toe walking or something so we weren't tempted anyway! We also try hand over hand throwing and especially with balls, but a long time before drawing 8 or even a 1!

Hopefully as DGS is still young he will get there too. DGSs new physio is extra good so we have got an injection of enthusiasm again!

JoMaman, if you are still around..?
Just wanted to tell you that I am half way through the book you mentioned (The brain that changes itself) and I have even started adding some additional exercises to my ds repertoire..
Very good book!

Hi nightcat - good to hear! Let us know if you see ay improvements