Here some suggested organisations that offer expert advice on SN.
MRI autism/language disorder(40 Posts)
can I just ask how many of you have had a brain scan as part of your assessment?
We did for dyspraxia/ speech disorder/a puzzle that is my ds. Came back as 'essentially normal'. (I asked the med sec to ask what 'essentially' means and why not just 'normal' but haven't heard back).
Is your ds having one?
No, but I always wonder why if a child is SO different from the norm they don't look for damage/difference?
DS had an MRI but as he had seizures. It came back clear.
Tbh I was amazed as DS had so many obvious symptoms caused by irregular pathways but I guess they just don't show on an MRI?
We have had an MRI because my Ds has seziures not just as part of ASD assessment and it came back abnormal.
I recently saw a TED talk that was saying apparently EEGs can be an even more useful diagnostic tool for developmental disorders, and is not being used.
Apparently doing EEGs can more accurately show areas of the brain that are functioning differently even without seizures.
I then had an interesting discussion with my sons consultant as regards this too whilst we are also trying to unpick ds. Ds has an abnormal EEG even though his seizures are under control with meds. The consultant said that the EEG was more indicative of ds's wider learning difficulties and Asd than his seizure disorder, and that children with Asd or learning difficulties would all have abnormal EEGs. So that backed up what the talk I'd heard was saying.
I think there is probably far more they could do to understand the brains of our children but it is not done.
I think you are right youare MRI's don't really show that level of detail and are a very blunt instrument.
Ds's MRI is abnormal but it doesn't really tell us any more than that iyswim. We know that the structural abnormalties seen are the cause of his difficulties and they've said they happened when his brain was forming in the womb.
Even though we can see where in the brain is abnormal it can't tell you what areas of function or learning will be affected due to brain plasticity there is no way to truly predict.
no MRI but we are under genetics and had microarray testing to find out why Dd1 is so different (and a microdeletion was discovered).
We have had genetics (all normal) but my suspicion is that ds has damage rather than is intrinsically neurologically different IYKWIM. I suspect that damage was at birth or jut before.
A physical difference in his brain would show that which is why I though MRI
I see, have you ever asked/pushed for an mri?
We've got never had genetics although I've always believed DS has something gets ally different because of the dark skin patches and unexplained allergic reactions etc.
Would your pead refer your DS to neurology for an MRI? Or could you contact neuro direct? (Being assumptious you know one because of DD3).
I've often wondered whether the searching for cause rather than effect would be covered by NHS? I've toyed and researched private genetic testing.
My plan is once DS has OT report to contact his pead and ask her.
youare, are you under a paed? I had to put my foot down to get a referral with the paed but in the end we were referred.
I told them I was thinking about another DC and needed to know if there was an underlying genetic cause and the likelihood of it happening again.
once we saw the geneticist, there was no faffing around. he offered testing straight away given Dd's presentation.
This is interesting because DS has a mild spld, but to have several EEGs due to abnormal febrile convulsions and was eventually diagnosed with GEFS+. One of his EEGs came back that there was an irregularity in his left hemisphere, so i wonder if there is a connection. He subsequently had a sleep deprived EEG which came back normal. He also had an MRI because he was having bad headaches as well and that showed up sinus problems.
I'm not sure I have ever asked for an MRI There is always SO much to talk about it seems to get lost in the mix IYKWIM <feeling inadequate and dazzled by meetings>
If there was significant damage at birth would it still show now?
We are dx-less but not mild/moderate so I think it might help the process (because there doesn't seem to be one).
Can you arrange it privately?
Zzzz if there was significant damage it would show now, yes. The damaged area would always be there and be able to be seen, even if the neural pathways wire around that area to form new connections to enable learning.
I've always wondered about MRI /eeg scans and going private for this too. There is no way now we have a asd dx that my pead would refer us for one so I'm watching this with interest.
You can arrange them privately. There's a place near me that does them - private physio centre so may be worth googling that sort of place near you?
It's not just getting he MRI though is it, you need someone to look at it.
Does it matter what the causes are? Do you think they might be treated in a different way if you knew the reasons?
glitter, for me is was important to find the underlying reason. there is no treatment in our case (chromosome deletion) but a lot of research is going on in relation to Dd's affected gene so some day some form of treatment may be available which we would not be able to access without a genetic dx.
also, we now know about the likelihood of us having another child with the same condition, we know that DD has a 50% chance of passing her condition on to her children (if she ever gets to that stage). We therefore have choices and options for the future by knowing the underlying cause and I am glad be found out. I can only see the advantages of finding the cause.
Yes it "matters"
If your child has a genetic condition so could your other children or your future grandchildren.
If your child was damaged at birth/before birth you may be able to help stop that happening to other children.
If your child has either or some other cause it may inform where you are going. Is it progressive? Will it heal? Are seizures, tumours, aneurisms likely?
If we knew the cause my autistic yet not autistic child might have an answer when people ask for assessments and the answer might be, I have XXXXX and no more assessment is necessary, and that in itself would be life changing for NOW.
If you are asking if I would treat ds differently if he was brain damaged rather than born different.....erm.....I doubt it. I treat him like himself. There is no significant support available in my area anyway,
Do the genetic screening tests most pre diagnostic children have not rule out genetic causes?
I suspect some brain damage, traumatic, swift labour. I gave birth alone. Obviously not planned. It doesn't change my DD's outlook and problems. We just have to get on with it. Genetic screening came back clear. We could request a brain scan but what good would it practically do?
It changes things if she wants to have children. It changes things if you or siblings do.
Autism for example can't be tested for with genetic tests but is thought to run in families.
Birth trauma doesn't carry those concerns.
Damage on the whole (from my limited understanding) doesn't necessarily carry any expectation of deterioration. Tumour or necrosis might. Epilepsy might.
I find the idea that it doesn't matter what causes disability baffling. If YOUR leg suddenly stopped working surely you wouldn't just think "oh well I'll just use a crutch" and toddle on with your life? You'd want answers and a prognosis because your other limbs packing up would be something you wanted to plan for.
I suspect that ds had some sort of regression triggered by an asthma drug (obviously I don't know for sure, but the timing will always make me wonder).
Several adults who had the same side effects had MRI scans to try to get to the bottom of their issues and were found to have similar brain defects - it's not known whether these were caused by the asthma drug or whether they were anomalies already present which made the person susceptible to side effects.
When we first saw the paediatrician for ds, I asked if an MRI would be possible, it would be good to know for sure if the drug had anything to do with the sudden change in ds, and presumably would also be of interest if there is ever any research into why some people have such severe reactions to the drug.
At some point I hope someone will do the research, but at the moment no-one is interested.
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