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my daughter is 18 years old and has cp. I have been researching stem cell therapy to see if it could help her. Sound like it might but would like some more information. Please help
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cerebal palsy
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- By Sasori
- Posted October 31, 2009 at 4:25 am
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Hi there
Check out this thread
http://www.inspire.com/groups/cerebral-palsy/discussion/info-about-stem-cel l-therapy-please/
Also, this website is excellent for info, there is a CP thread under neurological disorders
www.stemcelltherapy.co.nz
and my daughter's website has links and info and a blog
www.darylann.co.nz
Feel free to ask me any questions, our daughter had her first treatment in March of this year and we're taking her back for a second. My only strong word of advice is to stay away from embryonic stem cells and also research the clinic you want to go to THOROUGHLY - do not rely solely on their testimonials, find people who have been there through other channels and ask them about their experiences directly.
Good luck with the researching!
- By ticha
- Posted October 31, 2009 at 4:04 pm
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thank you for the advice. do you have a clinic that you suggest?
- By Sasori
- Posted November 5, 2009 at 5:39 am
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I strongly suggest you research all your options thoroughly.
We took our daughter (and many other kiwi families have done same) to Dr Ramirez in Tijuana, through SRI research institute (Dr Steenblock). We are all happy with our outcomes. Prices were less than 'the going rate' and they do not pressure you to go once you've made contact as some other clinics do. I've never actually seen advertising from these guys apart from on their own websites.
Negatives I have heard are regarding Stem Cell Biotherapy SCB in Tijuana, and XCell in Germany (who I think have connections with SCB anyway. SCB has been black flagged by the stemcellpioneers forum, and when we tried to locate members who had been to XCell, only one member passed on their (very negative) comments anonymously (to the group, not the moderator). There's also a Dr in the Bahamas I've seen a current affairs article on, can't think of his name, but he really puts on the pressure and they keep hassling you once you make contact. That is a big warning sign!
Beware of clinics who charge $20,000 or $25,000 USD as a straight fee - this is a figure that is within most people's reach when they're desperate and so is seen as a golden figure to charge people to get the most out of them, but the most throughput. It makes a lot more sense to be charged by the vial or amount of stem cells you are receiving (which could still end up around this figure - but is that what they charge everyone? even kids? every disability? those are the qeustions I'd ask about price). If they put you up in a fancy hotel as well - alarm bells. These are all things often 'part of a package' that is more about taking money out of pockets than curing anyones ailments.
Also, beware of those who say you'll be cured. Degenerative diseases can't (at this stage) be cured, and severe CP won't be either. Only mild cases of CP have been completely cured (at this stage) and that is at Duke University using the kids on stem cells from their own umbilical cord. Improvements will be small in the grand scheme of things - but they often make a large difference to the family.
Remember you are still putting your child under general anaesthetic in a (most likely) third world country - there are obvious risks associated with this and you must be sure this is something you really want to do.
Avoid embryonic stem cells at all costs - I'm yet to see something useful come out of them that doesn't result in cancer.
As your daughter is an adult, you may choose to look at using her own stem cells from her hip. SRI can do this, but Steenblock does argue that umbilical cord stem cells work better for CP. Might be something to discuss with the clinic you go with - at least you'll be sure where the cells have come from.
Good luck with your research!
- By ticha
- Posted November 5, 2009 at 10:23 am
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thank you sasori for all of your tips.
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