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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.

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....

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.

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

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

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

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.

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

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 16:27:08

Is ABA not allowed to be discussed then? confused

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

okay, understood.. thanks

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 15:34:21

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

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.

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.

Why would discussing research affect it negatively? confused

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...

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.

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.

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.

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

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!

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.

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).

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.

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!

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.

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