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Stem cell therapy for ASD?

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

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?

StarlightMcKenzie Tue 07-May-13 09:12:30

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

there you go

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I am still carrying out my research but as the US trials are recent, they have not yet been peer reviewed.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.

StarlightMcKenzie Tue 07-May-13 12:27:05

Aren't there some ethical questions wrt this though?


saintlyjimjams Tue 07-May-13 12:30:08

But you need to have collected cord blood at birth?

saintlyjimjams Tue 07-May-13 12:37:00

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.

saintlyjimjams Tue 07-May-13 12:40:27

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.

StarlightMcKenzie Tue 07-May-13 12:44:05

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.

saintlyjimjams Tue 07-May-13 12:53:50

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.

StarlightMcKenzie Tue 07-May-13 13:03:22

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).

StarlightMcKenzie Tue 07-May-13 13:07:35

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.

StarlightMcKenzie Tue 07-May-13 13:19:21

'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.

StarlightMcKenzie Tue 07-May-13 13:21:02

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.

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