Stem Cell Therapy in China

[IR_Efrem]

My Ex confronted me with this China Stem Cells - China Stem Cell News - FAQ

My oldest daughter has optic nerve hypoplasia (ONH) and septo-optic dysplasia (SOD). magic foundation for children's growth : Optic Nerve Hypoplasia

What I am asking from you fine folks is your opinion on the stem cell therapy from China. If this is a topic that you have strong ethical or religious ideals about I would like to ask that you keep those to yourself. I do not want this to be some type of debate over these factors.

My main concern is over the safety of my daughter. I personally do not feel that enough research has been done that shows no possible ill side effects from having this therapy done.

After some research I have found the following websites that have confirmed some of my fears.
Stem Cell Treatment for Children with Eye Nerve Disease Called “Medical Hoax�
Doctor: China's Stem-Cell Therapy for Kids Is Risky : NPR
Cellular Transplants in China: Observational Study from the Largest Human Experiment in Chronic Spinal Cord Injury -- Dobkin et al. 20 (1): 5 -- Neurorehabilitation and Neural Repair
Science-Based Medicine » Be Wary of Stem Cell Pseudoscience

The biggest fear (for me anyhow) is meningitis and possible tumor growth. The first website I posted states no possible harmful side effects and seems to be in conflict with everything else that I have read.

Please keep in mind that my daughter is not blind, she has sight and can read a 10 point font, even if it is rather difficult for her, she can read it. She is legally blind in 1 eye and has some problems seeing objects in certain areas of her peripheral vision. But she can see. She is 15 years old now and has adapted very well to her sight limitation.

This is not light reading so please don't skim on the reading and toss out a half baked opinion. This is highly important to me and very serious indeed.

To answer a quick question before it gets asked, Yes she needs my approval before doing such a thing to our daughter. We have full joint and legal custody of all our daughters.

Edit: I would like to add the following website Donate to the Hope For Rylea Fund! Cure Hypoplasia Through Stem Cell Surgery my Ex is in direct contact with this lady. This woman is claiming that the stem cell therapy has been improving her daughters eyesight. The story is a tear jerker for sure but I still cannot get past my skepticism.

[Vautrin]

That is a tough question. I am conservative in medical matters, and prefer to avoid surgery at all costs. Even moreso that would apply to as of yet, promising, but not adequately tested methods.

I will read through all that, and reply within 12 hours IR.

[IR_Efrem]

Thanks Vautrin, I appreciate it.

[Weiser]

I'm going to read through it more and get back to you.

Stem cell research fascinates me and I read everything I can about it, but I have never heard of any verified legit treatments. Trust me I'm looking too - If I ever lost sight in my left eye I would be screwed.

The story about Rylea is definately nice and I would love for it to be true, but the only coverage of it is by the National Enquirer?! The timelines don't even make sense either...

Your skepticism is quite warranted. I'm think this Dr. Huang seems like a charlatan who is just after your money.

Tell me, what would be so wrong in waiting say, 4 or 5 years for a proven treatment to come out? You know it is going to happen, it is just a question of when.

Like I said, I am 150% pro stem cell, and I'm positive I will one day have depth perception and a good right eye - but there is no way I would fly to china right now, even if I had the money, for this guy to inject my eye with stem cells. My luck I'd grow a tumor out of my face. I went through hell with my eyes from the time I was 2 until I was about finishing highschool. If I can go that long, I can wait until there is proven treatments.

I will read more on it though and try to post some better thoughts on the matter.

[IR_Efrem]

The stem cells aren't even a localized injection. They give you treatments through an IV into the bloodstream and epidural in the lumbar region (which injects the serum into the spinal fluid). The whole thing makes no sense to me. Not to mention the outright fallacies that I have found in their statements about possibility of host rejection and ill side effects. If I were an expert in human physiology and biology I would be willing to bet that I could find more fallacies.

If you read enough about my daughters condition, ONH specifically, you will find that: from a young age, a child can actually develop a certain level of eyesight. My thoughts tend to go backwards in time when we first found out she had the condition.

We were told that she could very well be completely blind and the best case scenario is that she has partial sight of some sort. *What if!!!* we had had this stem cell therapy at that time and *poof* as she got older, we found out she had sight (the same level of sight that she has now). Would we have contributed her sight to this therapy????? When in fact it was just her learning how to see with her own limitations that were provided to her by her optic nerves and/or her sight improving a little bit all by itself.

[TKDLady]

IR I can put you into contact with a man who has been to China twice to do the stem cell therapy with his son. He had all the same fears but so far his son is fine and more active since he has had them. Now his problem is quite severe and he did the stem cells hoping to boost his brain just a little to maybe have his son talk to him again. That hasn't happened but he would be a very good person to talk to. Also, Yahoo groups has a Brain Injury group and that is where my friend got in contact with the people to arrange the stem cell treatments. His son is brain damaged from a near drowning so I don't know if you would be going through the same contact person he did but like I said, if you want me to have him contact you, PM me your e-mail address where he can get in touch with you or send me your phone number, whichever works best for you.

Here is the link to the place my friend went:
www.stemcellschina.com

Click here for his website.

You can find some of his updates on China in the Feb 2008 past updates page. There is probably one about a year earlier too. He has gone to China the last 2 Christmases.

[Vautrin]

Weiser makes an extremely valid point, as ONH is not a degenerative affliction, time is on your side. With increased scientific knowledge, chances are that future cures will be far more efficient than now, assuming for the sake of argument that the cure on offer now is legitimate.

I'd say your scepticism, sadly, seems to be warranted.

The website of Rylea does not look promising. The National Inquirer? I wish I could certainly say it is a typo, but this is one, noone associated with the NE would make. And the issue for September 2008? Seeing as the website is maintained regularly ...

The first website you posted was from the company itself. That is as reliable as the statements on a website of a tobacco firm (before they finally caved in) on lung cancer.

Aside from the ill-effects (which could take decades to establish), I see little evidence to support the claims that the treatment is actually beneficial. A claim is easy to make, but as long as it is not properly and scientifically scrutinised to the n-th degree, it is uncertain what the effects of such a treatment are. As much as I hate to say it, in the past treatments, that were considered promising at the time, were offered that have subsequently proven to be a liability.

Speaking on the field of psychology (in which I was trained), which has its affinities with physiology as well. These effects mainly pertain to "older" people, but the people who underwent the surgery may have been affected by them.

Placebo-effects can be very strong, because of a lot of complicated interactions and mediations. Bottom line is: you are more likely to notice an effect if you are a strong believer in the cure; likewise many people who claim improvement, had more or less internalized their dysfunction. Thus, part of the improvement is because they change their mindset about their situation.

I am not saying that that is exactly what is happening in all the trials, but we can't rule these mechanisms out. Sometimes we so desperately want things to be true, that we actually convince ourselves that they are true.
Even "objective" tests can fail, because they have to be interpreted by someone knowledgeable, who may be strongly in favour or opposed to Dr. Huang's practices.

I'd be even more concerned for the possible ill-effects of such a treatment on the SOD.

[IR_Efrem]

TKD - I looked at his website and I appreciate it, if it comes to me needing more information I will definitely send you a PM with my phone number. As it sets I cannot get past the idea of the possibility of meningitis or a tumor developing.

My daughter is in great health and she does have a good deal of sight right now. You would never know of her impairment by looking at her casually.

There is much mention of the placebo effect in what I have been reading as well. Add this to the fact that ONH can progress a little all by itself, makes this therapy a prime candidate for those with ONH. I do not believe that the success stories have anything to do with the therapy at all.

I think my choice in this matter is already made. Lack of using international testing procedures, no history on results, no history on side effects, fallacies in many of their statements, and the possibility of very bad side effects. I cannot see myself subjecting my daughter to this.

[Scott]

I didn't read the article, but wanted to interject my own thoughts which are more political:

The research should be supported and done.

[TKDLady]

I am not advocating it but the stem cells they use are umbilical, not embryonic. Embryonic have the highest potential for tumors and such. Just a note for you to consider. He has done a lot of research. He didn't want to subject his son to possible future problems. It would be worth at least one conversation with him if you change your mind. Good luck.

[Meanon]

I haven't read the links, but on your summary and a look at the side effect on a medical site, I wouldn't do it.

Stem cell therapy is used routinely now for a number of conditions. For serious or severely disabling conditions they can be a life saver. For less serious conditions, it's not worth risking the side effects.

I sought advice from medic friends about my Dad's desire to go abroad for a routine knee op recently. They all advised against.

[IR_Efrem]

This has all given me more to think about than I really want. I spent a lot of time crying, worrying, and wondering how my daughter would make it in this crazy &*@#ing world, when she was a baby.

SOD/ONH children are typically downs syndrome, have glaring hormone deficiencies (including but not limited to growth hormones), blind or partially blind, diabetic, autistic, and epileptic.

I cried! Would she grow up to be a woman and fall in love? Would she constantly be the but of other jokes and not even be with it enough to realize it? Would her world be dark and not enjoy the simple changing of the leaves in autumn? Would she be 19 years old and a full foot shorter than she should be? Would her life expectancy be 30 years old? Would I have to bury my own daughter?

The mention of this *therapy* has brought back a ton of feelings and here I am with a tear trickling down my face again......

Taking her year after year after year, to see the endocrinologist and having arterial blood drawn, often times more than once and more than one time a year. I was the one holding her down while she was crying PLEASE STOP so they could draw the blood. All to check hormone levels and to find out if there could be a problem.

Her only limitation has been her sight and I've mention about how well she can actually see. I am so proud of everything that she has ever done and accomplished. To hell with this &*@$ there is no way I am about to subject her to the possibility of these types of side effects. I am getting way over emotional right now and I need to quit typing...

[Luba]

I don't know what to say, IR, other than your last post touched me very deeply...you are a very beautiful Dad!