I
have to thank Paul Whitely for a post on his website that I am hijacking
today. Click on Paul’s name to go to his
blog.
National Institute
for Health & Care Excellence (NICE)
Autism, The management and support of children and young people on the autism spectrum. The
guideline is still in the draft stage, but there are two versions:-
DO NOT:-
Consider a social-communication intervention for the management of the core features of autism in children and young people. For pre-school children consider delivering the intervention with parent, carer or teacher mediation. For school-aged children consider delivering the intervention with peer mediation.
Now, I am no medical genius, but nor am I a complete moron. I read the full Stanford research paper as a highly sceptical, but informed, parent. I concluded, as did the Stanford team, that they had found something very important. To get the full report you have to pay $31.50 but I figured it was well worth it. So if this excellent research just gets sliced and diced, and then trashed, in this 790 page review, how much faith do I have in the other 787 pages?
I am with those Quacky Californians on this one. Those NICE Brits can call me a quack too.
NICE
is an organisation in the UK, funded by the Department of Health. They produce excellent guidelines on most medical conditions for both doctors and
patients. They are all available free on
line.
NICE & Autism
NICE
are producing a guideline called:- Full version (790 pages)
Summary (40 pages)
You
may wonder who on earth is going to read a 790 page document. The 40 page document does not say a lot, you
could summarize it as folows:-
- Children should have access to care and therapy, that does not currently exist
- Local autism teams should have the skills to provide, or organize, the interventions and care recommended in this guideline, but they currently do not have these skills.
- No magic cure exists
The NICE list of Dos and Don’ts
(Mainly Don’ts)
DO NOT:-
Do not use the following
interventions for the management of core features of autism in children and
young people:
·
antipsychotics
·
antidepressants
·
anticonvulsants
·
exclusion diets
(such as gluten- or casein-free diets) -
sorry Paul
Do not use omega-3 fatty acids
to manage sleep problems in children and young people with autism.
Do not use auditory integration
training
Do not use the following
interventions for children and young people with autism in any context:
·
secretin
·
chelation
·
hyperbaric oxygen
therapy
DO:-
Consider a social-communication intervention for the management of the core features of autism in children and young people. For pre-school children consider delivering the intervention with parent, carer or teacher mediation. For school-aged children consider delivering the intervention with peer mediation.
Consider the following for
children and young people with autism and anxiety who have the verbal and
cognitive ability to engage in a cognitive behavioural therapy (CBT)
intervention:
·
group CBT
adjusted to the needs of children and young people with autism
·
individual CBT
for children and young people who find group-based activities difficult.
For behavior
that challenges, try antipsychotic medication.
The 790 page version - NICE Brits 281 and
Californian Quacks 305
I
was rather disappointed by the 40 page version of NICE, so I opened up the 790
page version. I recommend you do
too. It is totally different. Some people have spent many 1000’s of hours
analysing all the scientific literature on a wide range of biological, social,
psychological and educational aspects of autism.
The
problem was on page 281. This
is the page where those clever guys over at Stanford 94305, get their research into Glutathione (GSH) mentioned. (94305 is their zip code)
Then
on pages 389/390 NICE give their verdict on the Stanford guys' findings.
They conclude that while NAC does nothing bad, it also did nothing good.
I am with those Quacky Californians on this one. Those NICE Brits can call me a quack too.
I think I would like to see you set out the reason for your enthusiasm rather than just the fact that you feel it. I feel quite enthusiastic too but I am a non-scientist. I am therefore influenced (and depressed) by the fact that a) these lovely people at Stanford have done tests of NAC on a series of groups of people with vaguely mental disorders and b) that one of them has some sort of patent on a particular brand of NAC (the sort they are using for the trial) and in post-hoc interviews keeps making the point that only his sort of NAC can be guaranteed to produce these wonderful results. Not being a Yank I am not delighted to find this entrepreneurial activity embedded so deeply in my research. Doesn't invalidate the research of course
ReplyDeleteDear Autiemum
DeleteThank you very much for your comment.
I am also not a Yank, by nationality, my personality I would be somewhere in the mid-Atlantic. I refer elsewhere in my bloq to the whizz-kid scientists running off to file patents and start their own Micro-Pharma companies. I am very glad they do this. However, I do not belive their version of NAC is any better than the cheap one. I also now have read a scarily large amount of fundamental research about oxidative stress and autism. It has been well documented for 10 years. I even contacted a leading American researcher/neuroscientist in the field, to talk about my trialing of NAC. She was not at all surprised that NAC seems to produce a reduction in autistic behaviours. If funding was availbale, she would also like to do a clinical trial with NAC. I used regular NAC bought via UK Amazon. (about 8 quid for 100 tablets - I use 3 per day, one AM and two in the PM). First I read the reviews on the American Amazon site, where numerous sufferers of trichotillomania, seem to rave about their success with NAC, this I found bizarre initially. Then I tried it on myself, then I tried it on my son. Then I noticed another step change reduction in autistic behaviours. I am not trying to convince anyone to copy me. I just highlight the research I find interesting, the rest is up to you and your doctor.
One thing that Dr Hardan omitted to mention, is a rare serious side effect of NAC, that can be mitigated against. If you carefully search on Google you will find advice from one major US hospital (I cannot remember which one) warning that if the diet of the patient is lacking in vitamin B12 or the patient cannot absorb B12, due to low acidity in their stomach (true in lots of older people), instead of just raising glutathione (GSH), an increase in homocysteine may occur. Homocysteine is bad for your heart. In view of this, a special drug was produced, called Cerefolin NAC. It is a combination of NAC and B12 and folic acid B9; not surprisingly Cerefolin is expensive. Not only can you buy cheap NAC, but you can also buy cheap B12 and B9. I use NAC + B12 + B9, just to be on the safe side. I am sure you noted that Hardan used 900mg capsules, and the OTC capusules are usually just 600mg.
ReplyDeleteI hadn't noted that 900mg so thanks very much for pointing it out. I've been giving her 3x 600 a day with food so I shall add another at bedtime. B12 is very common in the foods she eats. B9 less so. The main result I see (if I'm not imagining it) is more interest in life outside her obsessions, more patience when thwarted, and unco-operativeness expressed by laughter rather than anger. Even if I am imagining it, it's very nice. Her residential school also seem more confident about her and are expressing willingness to keep her on for a couple of extra years (instead of politely flinching away)
ReplyDeleteMy experience is also that NAC reduces obsessions and therefore increase the capacity to cope. These are quite different changes to Bumetanide, which dramatically improved my son's social skills and the degree to which he is "present" as opposed to in his dreamworld. Bumetanide is very cheap, but it is a prescription medicine.
DeleteWho prescribed it for you? I tend to assume that I won't be given prescription meds and so I don't ask although my GP is very nice
ReplyDeleteIt is certainly prudent to wait for Lemmonier's third trial; but there will of course be a fourth and a fifth. Apparently, there is a delay of several months before the third trial while they make a liquid version of Bumetanide. This of course already exists in other parts of the world. So I think you may have a much longer wait than you anticipated. If the NHS is as flexible as you suggest and if your child is over 12 year old, then maybe your Consultant brother can give you 7 tablets of 1mg. After seven days if you are not stunned by the changes in your daughter, you can forget all about waiting for the trials in France.
ReplyDeleteI'm not criticising your decision not to wait or suggesting that it might be dangerous. I am glad it works for your child.
ReplyDeleteAre you finding the changes stunning? The Nature editorial (maybe quoting Uta Frith) says something like minor changes in the more able. Not that that would not be worth a lot. Even minor changes (a few more seconds thought before returning to dreamland) can make a huge difference.
I also noted her comments; here they are for the benefit of anyone else:-
Delete(1) She adds, however, that the effects of the drug were small, and that one-third of the placebo group also showed some amelioration of symptoms.
(2) “The effects were only noticeable on some gross behavioural measures, [but the findings are] consistent with my view that there is a lot of spontaneous fluctuation in symptoms and a general tendency to improve over time,” she adds.
(3) But Frith remains sceptical. “I have seen a number of treatments for autism come and go, and this leaves many questions open, such as what is the [drug’s] mechanism, and will the effect be replicated?”
Before I lay into this supposed expert, I would like to point out that UCL just received a huge grant for its autism research, something like 40 million pounds. Here is my humble rebuttal of the "expert" opinion.
(1) a placebo effect of one third in an autism study is remarkably low. I wrote a post all about the placebo effect in autism. One would have thought someone getting paid lots of money to work full time in autism research would have bothered to check this out.
(2) We all know that autism fluctuates over time; the results of that second trial looked meaningful to me and if the UCL lady had bothered to check the previous research using bumetanide for seizures in new born babies and understood the channelopathy issues behind how it works, she might be be worth listening to.
(3) Lemmonier is now goung to have a large 3rd trial and maybe in 5-10 years time when bumetanide is common therapy in France, the UCL lady may reconsider her ideas.
I am glad Uta Frith is not my doctor !!