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Stem cell therapy for ASD?

(68 Posts)
stardustmum Tue 07-May-13 08:51:54

Hi
Just wondering if anyone has tried this for their ASD dc.
My son is 4, on an ABA programme and pretty HF. I am encouraged by latest research on stem cell therapy on ASD kids in the US and am considering participating in a UK trial.

stardustmum Tue 07-May-13 13:38:07

Starlight, I hear your arguments re ABA and totally agree with you - the anti-ABA brigade winds me up to no end. I received your PM and will reply once I have collated the info re the UK trial.

BeeMom Tue 07-May-13 13:45:12

I'll be frank - I am skeptical that any therapy that is purported to cure or significantly affect hundreds of different and essentially unrelated conditions has any more than a placebo (or, at best negligible) effect, particularly when risk is considered.

With an autologous stem cell donation, risk/benefit is one major question, but the second is if the BM stem cells are going to be of that much benefit, why have they not already fixed the "problem" since they have been in the body all along?

Call me a doubting Thomas, but that is just my view. It is personal - but for example, I see children with the same condition as Bee and DS, who were at the same point medically several years ago, but have had MASSIVE and intense medical intervention (comparatively, we are quite hands off) and they are almost categorically doing more poorly than Bee is. In the US, treatment is broad, sweeping and intense, in Canada, it is very much "arm's length" until problems arise, then quite conservative. The prognosis is better and death rate is lower.

Furthermore, it is impossible to do a controlled, randomised double blind study for treatment like this. The diagnosis for autism on the rise, partially since more is "recognised" as autism now - not just the "classic" autism of only a generation ago. As a result, there is not as much data on the long term growth and development of those with "more functional" places on the spectrum. Is it possible that the beneficial effect of the treatment is not related to the treatment at all, but the intensive therapy that occurs at the same time, or just through time and biology. Not all "autisms" have the same root cause - my family's, for example, is a spinoff of mitochondrial encephalomyopathy - but to think that one treatment could fix them all is akin to saying that one drug will cure all cancers, regardless of type.

Donning my flameproof knickers - this might be a rough ride...

I agree beemom.

zzzzz Tue 07-May-13 14:19:15

I think beemom has summed up a lot of my rather muddled thoughts on this.

It is possible to be a LOT more transparent as to why you think something will work and how. But the. I am by nature pretty jargon averse.

infamouspoo Tue 07-May-13 16:16:31

If I thought for one tiny second stem cell transplant would fix ds's brain injuries (he has severe cerebral palsy) I'd sell the house, everything, and fly him to China where its done. I know people who have done this. They just arent seeing results. There isnt any science backing. I wish there were and I'm sure eventually it will be shown one way or the other for concrete examples of repairing damage. But does repairing damage to a brain mean the condition will vanish given the brain wiring has had years as it was? If ds's brain suddenly filled in all the holes would he walk and talk? Or would the new bits not integrate? There's too many unknowns.
But what there is are lots of people and lots of therapies willing to fleece desperate parents. I know, I've been there and spent lots and ds is still at the severest end of cerebral palsy.

www.newscientist.com/mobile/article/mg21729084.800-are-breast-milk-stem-cells-the-real-deal-for-medicine.html

Breast milk contains stem cells. Also encourages production of oxytocin.
Been musing recently on extended nursing and asd...

infamouspoo Tue 07-May-13 17:02:12

its clearly not a cure all. I extended nursed all my kids. All have ASD and one has brain damage caused by a lack of oxygen. One has dyspraxia.

PolterGoose Tue 07-May-13 20:12:20

Beautifully put BeeMom

It is always going to be challenging to measure the efficacy of any intervention with children with autism because it is not a static condition.

stardustmum Wed 08-May-13 09:03:35

BeeMom, I do have a degree of scepticism about this especially as it is not yet peer reviewed.

If you read the studies, researchers are quick to point out that this is by no means a magic pill, although it has shown some improvement in autistic children.

To answer your question, BeeMom, I think the reason that stem cells already in the body had not repaired the problem is because they are contained within the bone marrow (or milk teeth) and not in the blood stream, to enable them to go where they are needed.

I am not advocating stem cell therapy. I'm merely researching (with a critical eye) and would like to get in touch with parents who have either done this abroad or may be interested in finding out more about it.

zzzzz Wed 08-May-13 09:21:36

Are you a researcher then? Are the trials in the UK already running?

Well, I'm certainly interested in finding out more about it.

PolterGoose Wed 08-May-13 10:01:43

stardust when you say you are researching it, do you mean you are a layperson looking at published research and exploring mass media and anecdotal reports, or are you an academic in the field of stem cell research?

stardustmum Wed 08-May-13 10:25:39

I'm not a researcher or an academic. I am merely reading published reports of controlled trials that have taken place abroad to decide whether I should volunteer my son for a similar UK trial when it does eventually happen here.

What do you mean by your post on: Tue 07-May-13 12:24:09 ?

Why can't you discuss it on an open public forum?

stardustmum Wed 08-May-13 10:44:08

Will PM you, Starlight.

zzzzz Wed 08-May-13 10:51:09

I'm interested in why you can't discuss it too? hmm

I'm also intrigued, and would like to understand the idea behind these studies.

I can believe this goes on in china as regulation is much easier their and attitudes to informed consent are more lax, but am surprised there is a UK study.

I worry about disabled children being used as guinea pigs for little more than a punt in the dark. sad

PolterGoose Wed 08-May-13 11:04:33

This is all a bit weird hmm confused

stardust it does seen a bit off to start a thread and then want to pursue the discussion off-thread. If you are 'just a parent' (ie not an academic or a journalist) I really don't get it. Most of us here share ideas and resources.

infamouspoo Wed 08-May-13 11:14:21

stardust, if you go on forums for brain damaged children that are mainly US based you will find plently of parents who have been fleeced for £30,000 for stem cell therapy.
You have a child who is high functioning yes? Why risk him/her? All of mine have HFA. 3 are in university and doing well after hideous early years. Pretty good outcome without a dangerous untested therapy. You know what made the difference? Home education so they could do things at their own pace.
Just my opinion.

stardustmum Wed 08-May-13 11:19:18

I merely wanted to discuss stem cell therapy in general because of what I have read about it. Thank you for sharing your views and I apologise if I have offended anyone.

stardustmum Wed 08-May-13 11:39:20

Infamouspoo - it's amazing what your kids have achieved and I genuinely take my hat off to you because I know that it must have entailed hard work in your part. What you say about your kids is very encouraging and inspiring.

I won't swap ABA in favour of any alternative therapy. If I am convinced after reading all that I can on the subject, that there are no side effects and that it won't harm my son in any way, then I would give it a shot (so to speak!). I am well aware of quacks and cowboys in this field so will only agree to participating in a regulated and controlled trial in which I won't be asked to pay anything!

zzzzz Wed 08-May-13 12:25:35

I don't think you've offended anyone, but I also don't think you are engaging in a discussion.

alimac87 Wed 08-May-13 12:34:56

From what I know about stem cell research/gene therapy, this sounds like absolute bollocks. I can't see what the scientific rationale is, and if it worked in the way it's being suggested it would probably be a very high-risk therapy. It sounds like high-tech quackery, quite honestly.

(I'll probably stand corrected but that's my initial reaction).

BeeMom Wed 08-May-13 13:01:35

My "it has been a very long night" uncensored opinion - MANY families of means who had their children in HBOT years ago (and even bought home chambers) are turning to stem cell therapy now as they are finding that HBOT is not the Panacaea they were promised.

Personally, and again, this is my very skeptical opinion, it reeks of snake oil. Plain and simple. If it supposedly cures (or positively affects) dozens and dozens of unrelated conditions in a way that even the "academics" studying it can't adequately describe in anything that doesn't sound like an infomercial... be wary.

Pursue what you want for your child or self... but honestly stardustmum your refusal to talk about it ON the forum makes me even more wary than the treatment itself.

infamouspoo Wed 08-May-13 13:19:49

I think most of us in the early years have that desperation for a 'cure'. I cant say I had it for ASD but the internet with all its promises didnt exist back then. When the brain damaged one came along the internet did exist and I spent his early years desperately hunting for any sliver of hope, any 'cure' that would mean he would move or speak or live past the prognosis he was given. Abd believe me there's quacks out there. I wont bore you with what we tried and the money we wasted and not one thing made a blind bit of difference except scintifically tested methods. Such as the ketogenic diet. And next week the intrathecal baclofen pump which will reduce his spasticity and prolong his life a few more years.
I am watching the stem cell research but so far it shows no results whatsoever in repairing damaged brains, I desperately wish it did. Maybe in 20 or 30 years it will and no child will lie in a wheelchair unable to take part in life but until then acceptance and changing society is a better use of energy.And I wish someone had smacked that into my head £1000 ago!

salondon Wed 08-May-13 13:48:19

Hi

Did you all read the links I posted about the stem cell research in Sacramento? I am intrigued too.

I PMed stardust and she spoke to me on the phone also. Her child is on the spectrum and she is running a very successful ABA program under one of the best consultants in this country. I am sure you have all read Catherine Maurice's 'Let me hear your voice'. Back then ABA was looked upon as quackery too. Stardust isn’t able to discuss the trial openly because she doesn’t want to jeopardise someone else's research.

She is simply looking beyond what she is doing and ensuring there isn’t anything else she could have done(in addition to ABA). What she is asking is that has anyone else heard of this said trial (which is why I asked the original question that is there a trial happening in UK).

So I guess the answer is no, none of us have heard of this trial?

Thanks
SA

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