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Do you think there really are "cures" for sn or is it all bollocks

(69 Posts)
2shoes Thu 17-Sep-09 22:44:45

random I know, but for some mad reason I was thinking about this earlier.
you know the stuff, swimming with dolphins.......well I know young people who have done that, had a lovely time, but still the same.
oyxgen tanks or some such thing to help CP.....yeah like that will work.
people saying take victims for epilepsy.sorry you what!!
add your own.....

jjones Thu 17-Sep-09 23:51:11

DS's paed told me last week that with the right intervention 10% of children with a dx of asd at 3 will have that dx removed at 10-12 I can't see it myself.

usedtobeadinosaur Fri 18-Sep-09 00:43:54

But what is the 'right' intervention?! We seem to be getting bugger all!

catkinq Fri 18-Sep-09 00:55:39

I think that with HFA or Aspergers it is possible to teach some children to mask the condition sufficently to hide it but I can't see how it can go away.
Catkinq

Phoenix4725 Fri 18-Sep-09 06:11:59

its load of bollocks.I get the take fish oils and vitamins yes fish oil might help brain cope with some things but neither of them is going to repair brain damage

troutpout Fri 18-Sep-09 06:37:44

It's bollox
ds has Hfa/aspergers. He is learning to cope and compensate for his differences (slowly) He will never be cured. His brain functions so completely differently from an nt childs...it's connections are completely different.This will not change.

Shells Fri 18-Sep-09 07:07:13

Bollocks.

Think it stops people having to focus on the hard work of fighting for support.

bubblagirl Fri 18-Sep-09 07:40:26

i use fish oils for ds as it helps his concentration but i know he will never be cured if vitamins was that simple there would be no disability so why people think this is the answer i have no idea as surely the professionals would have thought of this by now and there would be no ill or disabled people as were all cured

i think as an individual if this is what you want to believe then ok if it helps you, but it should not be told to others like its some miracle as we all know there is no cure

i get told all the time ds HFA will be taught out of having ASD as if its that simple i think he will be taught how to conform but again he would have learnt not understood why just that this is what he has to do thats not normal still thats just functioning so no he wont be cured but yes every chance he will function better his understanding will still be the same

Marne Fri 18-Sep-09 08:11:28

DD1 was diagnosed with AS a year ago but now has very few traits, she will always be AS though and will always have some of her traits because thats what makes her dd2.

DD2 has ASD i would love for her to only have AS by the time she's 10 but i can't see it happening.

r3dh3d Fri 18-Sep-09 08:25:26

I think it's a sign of how little we know about some of these conditions. ASD, for instance, is diagnosed on the symptoms not the cause because the cause isn't understood. Seems to me highly likely that several similar conditions could all be bundled up in what we are now calling "ASD". A bit like a character in Shakespeare having "an ague" which is pretty much any disease that causes a fever.

I suppose that if a minority are caused by fixable things, the disability could go away in those cases. But it seems to me that any condition where you have a miracle cure in a handful of cases and no response in the rest - that's a sure sign that you were actually treating more than one condition.

silverfrog Fri 18-Sep-09 09:04:16

agree with r£ - there is so little known.

dd1 has improved immeasurably since we out her on a gf/cf diet.

before, she was definitely in her own world - didn't really notice us much, or respond to us. hardly any langugae, no pain perception.

within a month of her going gf/cf her langugae really exploded (still delayed, but she found it all much easier to pick up etc), she started really pating attention to what was going on around her - for the first time she reacted when I left the room etc (she was 2.6 by this point), and in many ways best of all, she started feeling pain properly. so now she can tell me if she has a blister, or can tell me where she banged etc. the littlest thing, but makes life so much easier.

we have not had as great a success with vitamins, but she is definitely more on the ball when i am supplementingher.

is she cured?

no way, but she is vastly improved.

silverfrog Fri 18-Sep-09 09:06:45

sorry, agree with r3

2shoes Fri 18-Sep-09 09:15:39

dd is on some new medication, it is really good and is reducing her extra movements(she has athetoid cp) but it isn't a cure, just helps.

pagwatch Fri 18-Sep-09 09:29:15

TBH I think that some children can improve to such an extent thattheir disability no longer constitutes a significant impairment. I have met a child who was a head banging, non talking, violent and self abusing toddler who has become a young man who attends mainstream and shows signs of aspergers but mildly.
But I think they are rare and i think they depend upon the right intervention being given to the rigfht child at the right time. And for many the same thing would do little or nothing.

My DS was also self harming and non verbal and doubly incontinent and now, aged 12 is chatty and affectionate but still very impaired.

I don't think we should throw the baby out withthe bath water. I think the notion that nothing can ever help is as stupid as the notion that all children can be 'cured'.

But I do loathe the way all these miracle stories simply conspire to sendthe endless drumbeat message that your child will never be helped because you were not persistent enough. Every tale of hope potrays the brave mother challenging the experts and devoting her life to a new treatment and her child was cured. We are therefore left to conclude that we just didn't try hard enough.

It is like all that stuff about positivity and will to live beating cancer. My dad said to me " people keep telling me to fight and be positive. I am still in terrible pain and still dying. It makes me feel like they just think I am not doing my best. Isn't it bad enough that I have to leave them without them making me feel like I am letting them down"
sad

TheDMshouldbeRivened Fri 18-Sep-09 09:30:20

if its brain damage like in CP then yes, its all bollocks. You can control symptoms like drooling, athetoid movements, spacticity, seizures etc but it cant be cured.
But if your mobility and sensory issues were caused by nerve damage from lack of B12 I reckon that could be cured.

misscutandstick Fri 18-Sep-09 09:40:33

ive got the best by far then:

In yr3, DS1 was told by his obviously very well informed and well read educated teacher that "all he has to do is learn his spellings, and everything will be OK then" hmm

DS1 is ADHD, dylexic & dyspraxic - but there you go, dont need intervention, just spellings. hmm

glittery Fri 18-Sep-09 10:23:41

ex MIL hates doctors, "knows everything there is to know about the human body because she watches the Discovery health channel" hmm, is obsessed with vitamins and minerals and anything non prescription is forever giving me things to shove into glitteryboy (i dont) that she has read is the latest miracle cure.
she once told me to give him huge doses of magnesium and pure EPA as it would cure his CP by replacing all the damaged pathways in his brain, told her i wasnt giving him anything that i hadnt checked out with a doc first, she said "but dont you want to fix him?" angry

bubblagirl Fri 18-Sep-09 10:34:01

pag that bit about your dad made me feel angry and sad same thing happened to my best friend

BethNoire Fri 18-Sep-09 11:31:21

'But I do loathe the way all these miracle stories simply conspire to sendthe endless drumbeat message that your child will never be helped because you were not persistent enough.'

I think thats the really scary bit isn't it?

I know kids on the spectrum can massively improve- but for an actual cure I beleive that a childwho is cured had a syndrome that presented as ASD- there seems to be a lot around food intolerances and deficiencies for example.

If the peopleadvocating a cure said 'this technique can really help with ASd / CP / whatver' then I'd be OK; we've used non conventional approaches oursleves/

but I think marketing a cure presents those who dont get the same results as failures, preys on people at their absolute lowest and most scared, and worry me immensely.

Which remind me that there was similar thing on watchdog last night with the cancer cures- Obv. different type of disease but people witn no empiricalevidence claiming massive results.

If the people marketing these techniques had a cure they#d be millionaries many times over and we'd all have NT kids. The PCTs would be laughing all the way to the bank almost regardless of cost taking into acocunt care, respite, education costs- and with many disorders like ASD tere aren't even the drug companies screaming for their stake.

I hope ds1 learns to mask the most unacceptable of his traits, though ds3 won't mask his langauge disorders and concentration problems. But tehy won't get a cure, unless some miracle happens, and I am determined to give them a great life and enjoy them now, not spend the next twenty years bankrupting and exhausting myself for something that will not happen.

BethNoire Fri 18-Sep-09 11:33:21

Pag- my old bos died of breast cancer at 39. I clearly remember her saying to me that she was 'sick of being told to be postive and it will goaway; if I want to spend my time crying and angry then I bloody well will' - by then she was spending weekends in a hospice, and died shortly after. Why should she have felt bad for feeling cheated? she had been.

pagwatch Fri 18-Sep-09 12:14:58

bethnoire

I so agree with you.

I think that my son fits severe ASD criteria but I actually think that many of his traits are responses to food intolerances and not true asd ITSWIM.
So I think his improved ability to communicate and his calmer moods etc are as a result of his system calming down - less hyperactivity, less pain, less fuzzy headedness. But his real ASD remains a constant underneath.

When I realised that diet changes helped him I effctively chose to ignore everything else.
I started an ABA programme but DS2 loathed it and it cut the heart out of the peace in our home. DH and i realised that just for DS2, just for my son, we could let him be himself and happy or we could spend his whole childhood trying to chase normal.
We couldn't do that.

Just to be clear - I have nothing against ABA and for many children this is a great therapy. I just mean that for my son and my family it wasn't

bubbla - it really makes you reassess the knee jerk 'ra- ra, you have to choose to live' stuff that people just spout doesn't it. sad that your friend had this too.

saintlydamemrsturnip Fri 18-Sep-09 15:44:45

Oh definitely for some children it can help enormously.

DS1 is currently whacking his head hard enough to have a bald patch and a permanent lump and bruise. It coincides with a relaxation of the gluten free diet (not through our choice particularly- long story).

There are lots of parents out there who will give biomed advice for free.

saintlydamemrsturnip Fri 18-Sep-09 15:45:21

And although he'll still be autistic off gluten- I;d rather he was severely autistic with an intact skull!

staryeyed Fri 18-Sep-09 16:19:07

Ds is definitely different with biomed than without it. However, I would never think he could be "cured" but I do think we can improve a lot of his symptoms.

cory Fri 18-Sep-09 16:55:02

'But I do loathe the way all these miracle stories simply conspire to sendthe endless drumbeat message that your child will never be helped because you were not persistent enough.'

Yes, and the corrollary to that is that you feel really guilty if you say anything on the lines that your dc may have to live with their disability. Because it's like you don't care.

Of course, I want dd to be cured. But I do not want her to put her life on hold until that happens.

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