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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.

zzzzz Tue 07-May-13 09:09:40

I'd be interested to read what the rationale is. Can you link?

I wonder how that could work too. On the surface it doesn't make an awful lot of sense to me, but would be interested in reading about it.

What UK trial is there?

salondon Tue 07-May-13 09:34:04

stardust - Is there an approved trial happening in UK? I know there is one happening in US at Sutter Neuroscience Institute in Sacramento

zzzzz Tue 07-May-13 09:38:21

Link link link

salondon Tue 07-May-13 09:42:07
stardustmum Tue 07-May-13 12:24:09

I can't discuss much in this open forum but PM me if you want more info.
I am still carrying out my research but as the US trials are recent, they have not yet been peer reviewed. My instinct from what I have read so far is that this is not quackery.

Aren't there some ethical questions wrt this though?

PMed

But you need to have collected cord blood at birth?

www.foxnews.com/health/2012/10/24/clinical-trial-attempts-to-cure-autism-with-cord-blood/

We don't have cord blood, but will be interesting if in the future siblings can donate. TBH though I'd always be very cautious about this sort of research. It is very invasive and poorly understood at the moment. I wouldn't worry too much about using your own cord blood, but I have seen some weird reports of using sheep stem cells to stimulate other stem cell growth in a relation which is then injected into the child recipient (or something like that) & that would make me uneasy.

stardustmum Tue 07-May-13 12:38:13

Stem cells can be extracted from bone marrow too.

In the past there have been ethical questions as lambs' cells had been used but now fresh human stem cells are harvested from either cord blood or bone marrow and reinjected into the blood stream, meeting FDA approval.

Bone marrow extraction quite invasive though?

If it becomes a recognised technique then yes I'd be interested - ds1 is severely autistic (non-verbal teenager), but it's have to be well established with clear benefits for me to agree to put him through it.

I mean ethical in that you are effectively attempting to affect and change the personality of the person, their development, in some circumstances their unique offering to society.

On the other hand this might be more than a price worth paying to enable a person to function more ably in society. But who defines what that should look like? Who defines whether the invasive procedures have been a success?

blueShark Tue 07-May-13 12:52:23

Someone I know had this done for their DS in the US and had some results. They were hoping to have it done again this year hoping for more improvements. And someone I met at the HBOT were going to have it done in China - shame I dont see them any more sad I did keep the cord blood from DS2 who is NT however - so very interested in the research. It was heavily discussed at the biomedical conference in London.

stardustmum Tue 07-May-13 12:52:41

On that argument ABA may not be considered ethical either.

I think I'd want to know the results were going to be pretty spectacular to go through it.

stardustmum Tue 07-May-13 12:58:00

So would I, saintlyjimjams. I'll be watching these US trials very closely.

On what basis would ABA be unethical confused. It's just education. It doesn't and can't change anything about a person that education doesn't, unless education is unethical I suppose (and there are some who certainly think that, though it is generally accepted that NOT educating is unethical).

Though I do have to qualify that with the fact that there has been and continues to be some VERY unethical practice that those conducting it CALL ABA, but that doesn't make ABA itself unethical.

infamouspoo Tue 07-May-13 13:08:16

Surely you'd need evidence of actual damage for the stem cells to repair? The results from China on children with brain damage have not been promising and there have been tales of tumour growth. I wouldnt risk it personally.

stardustmum Tue 07-May-13 13:08:33

ABA opponents believe it's unethical because it is wrong to modify a child's "god-given" condition blah blah blah

stardustmum Tue 07-May-13 13:14:15

Because autism is so complex and the precise cause is not known, the trials currently being done suggest that the stem cells injected into the blood stream go wherever they are needed for the repair to take place. I don't know anything about the tests in China and whether they have been controlled as they are in the US, but what you say about tumour growth is shocking, infamouspoo. If there is even the slightest whiff of such side effects from the controlled testing then I definitely won't do it.

'ABA opponents believe it's unethical because it is wrong to modify a child's "god-given" condition'

That only makes any sense as an argument if you apply it to all children and therefore deny them ALL parenting, education, policing and if you are happy for the next generation to all masterbate on the bus.

So is it just injected into the bloodstream, and that's all?

How do they know that there is any damage though? Or are only children with evidenced damage that are selected for the trial?

JsOtherHalf Tue 07-May-13 13:35:08

Stem cells can also be grown from milk teeth. I don't know anyone who has done it though.
www.futurehealthbiobank.co.uk/tooth-stem-cells?gclid=CO3-3pGAhLcCFRTMtAodLVcAFA
uk.bioeden.com/service-price/service/

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

PolterGoose Wed 08-May-13 14:03:43

I've just read your links salondon, one is for a company that charges a fortune to store cord blood and through the other I linked to an article outlining proposed research with stem cells. It is all early days and I certainly would be concerned about the ethics of this trial, especially as children are unable to give informed consent and parents of children with autism are often exhausted, desperate and therefore vulnerable to claims of miracle cures.

zzzzz Wed 08-May-13 14:39:13

There are still many who don't accept ABA as core treatment. Myself I would say that is because of the lack of transparency and inability of participants to discuss their therapy openly.

How would discussing stem cell research compromise a study?

Snake oil is very close to what I was thinking. (Though I favour Bullshit) . Cloak and dagger behaviour surrounding vulnerable families and children makes me angry.

On the other hand I do like actually discussing new therapies. The nuts and bolts. The premise. Results and conclusions. Possible application.

lougle Wed 08-May-13 14:47:57

I've been reading this thread with interest. I think there is cause for concern.

Salondon you say

"Stardust isn’t able to discuss the trial openly because she doesn’t want to jeopardise someone else's research."

There are ways of discussing these matters without alluding to a trial and then refusing to discuss it on an open talk board. In fact, I think this is a worrying thing, to ask people to contact off board if they want further information. The information either is open to the public or it isn't.

I wonder if it would work anyway. As another poster has said, there would need to be 'damage' for it to work. Is ASD the result of 'damage' or simply the result of 'alternative networking' in the brain? The jury is out, I believe.

If ASD is a result of 'alternative networking' from birth, then there is no 'damage' to fix, although there are certain elements that prevent a person with ASD from accessing successfully the society within which we live.

Huge ethical issues there.

My DD has a brain 'malformation.' That means that although her brain is not 'right' or 'typical' it's likely that the different structure of her brain has been present from birth. There is no 'damage' to fix.

salondon Wed 08-May-13 15:00:07

I am probably missing the point here. I think the discussion was "have you heard of stem cell therapy", right?

I always thought they only do it in US as of now.

I got the wrong end fo the stick...

Why would discussing research affect it negatively? confused

lougle Wed 08-May-13 15:28:11

salondon, this sentence:
stardustmum Wed 08-May-13 09:03:35
"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."

is what concerns me. Why does it matter who else may be interested in finding out more about it if you yourself are only interested in finding out more about it? hmm

I don't think it's helpful to raise a subject then tell people you'll only discuss it via PM. It's almost advertising.

salondon Wed 08-May-13 15:32:58

Yes your point makes sense lougle. I was more curious and less skeptical and went and PMed her. All I am saying is that atleast in this instance, we have a genuine mum asking her fellow board members if they have heard about this study from other sources.

salondon Wed 08-May-13 15:34:21

and I should add, I havent heard of this study in UK and that is why I was even more curious

lougle Wed 08-May-13 15:46:04

No, all you are saying is that in your opinion you have a genuine mum asking her fellow board members if they have heard of this study from other sources.

As this poster has not given any details about the said study, or even potential study, then no one can give a reasonable answer.

As the poster won't give any clue as to her source, no one can investigate for themselves.

I'm not about to PM someone to discuss something which could either be discussed on board, or not discussed at all.

salondon Wed 08-May-13 15:52:08

okay, understood.. thanks

infamouspoo Wed 08-May-13 16:27:08

Is ABA not allowed to be discussed then? confused

zzzzz Wed 08-May-13 16:39:33

infamouspoo. I think it tends to get very heated. Questions are seen as criticisms and people take offence very easily. That's been my experience anyway. I doubt I'm alone in feeling that way.

infamouspoo Wed 08-May-13 16:46:14

Kinda glad most of my kids are grown and I'm guessing any ABA therapist would run a mile from a child with ASD who also has severe cerebral palsy and no speech. wink

blueShark Wed 08-May-13 16:54:08

blimey - most holistic therapies get called Snake Oil.

Well in my experience few 'snake oils' have helped my DS come a very long long way. I have done AIT, retained reflexes, homeopathy, cranial osteopathy, TH, biomedical, HBOT...and they have all helped a bit. You just have to find the right provider!

I have carefully researched stem stells for few months now and know of people with children with ASD and CP that have done it with some success and improvements. I will certainly not brand it as a 'cure' but every little helps.

poo There is a poster here who is doing ABA with a child with CP.

infamouspoo Wed 08-May-13 17:01:10

I reckon if they dont work they should return your money.

infamouspoo Wed 08-May-13 17:09:14

plus, with CP, as the child grows, you have absolutely no idea if they were going to improve or not anyhow. So there's no evidence. DS has never physically developed beyond a newborn. He has newborn reflexes. Has horrendous contractures, cant even lift his head or roll. Not one thing we wasted money on made a jot of difference depite the outrageous promises of Brainwave, HBOT etc and the vast sums of money. During cranial osteopathy he started fitting and the therapist said 'oh, thats good, its the stress coming out'. Stupid man. the fits were infantile spasms that nearly killed ds and nearly destroyed his intellect. Stress coming out my arse.
I now have zero respect for anything that hasnt has double blind scientific studies. If these things work, lets see some studies. But desperate parents will continue to throw money at crystal wavers, money they probably dont have as when you care 24/7 you dont get to go to work as well.
I do hope the stem cell stuff gets decent funding but I am dubious about brain repair. Spinal cord repair I can see but brain repair, I dont know. But we live in hope.

blueShark Wed 08-May-13 21:17:01

infamouspoo - I wish all providers did money back guarantee, I am yet to find one! Everyone promises results and when you question the what if it is doesnt work you get well the brain is different with everyone, you never know!

And is the same with every child I think, you never know as they grow whether they will improve or not. But I will feel deeply guilty if I didnt try what I researched to be possible improvement for my DS.

I know a mum of a CP child that has done over 1000 HBOT with him and lots of other therapies and she said yet there are children in his class that were more severe than him and grew up in front of the TV and improved more somehow....

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