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Info about stem cell therapy.....PLEASE

My_Angel
  • By My_Angel
  • Posted June 26, 2009 at 5:51 pm · 28 replies
  • In Treatment
  • Shared with the public
0 Recommendations

hi,

i am a mother of a 2.5 year old adorable daughter wit CP.
I have been hearing a lot about stem cell therapy these days . I have also contacted a doctor locally regarding te same. I want to get it done for her in te best hospital. Request you all to kindly suggest which would be te best hospital( across the globe) for her stem cell therapy. please reply soon,as i cannot afford to c the little one suffer her pains. she has still not acieved neck control, sitting, standing, talking etc.... please help!!!!thanks in advance.

Explore topics in this discussion:

Cancer Surgery Scoliosis Leukemia Stem cell transplant Seizures Spasticity Memory Microcephaly Epilepsy Cerebral palsy

28 replies

Sasori

check out my daughter's website www.darylann.co.nz
We got her umbilical cord stem cell therapy in Tijuana. We are very happy with the results and will be going back again early next year. Also check out www.stemcellpioneers.com. We found this site invaluable for meeting people who are in the same situation or have alredy received treatment, without having to rely on clinics to provide references that we might not be able to trust (face it, there are a lot of scam artists out there).
There are already a couple of threads going regarding stem cell therapy, have a look around. Feel free to add me as a friend, and contact me regarding any of your questions, I am most happy to share our experience. At least 4 families that I know of from New Zealand have been through the same clinic, but I'm quite sure the number is closer to 10, with more famlies fundraising at the moment to go. You are not alone!
Re 'the best hospital' - this therapy is still outside 'mainstream' medicine - no matter who you go with you are going to have to be sure for yourself that it is the right place, as no pediatrican etc can recommend this for you at this stage. Take your time and do the research, talk to as many people as you can. There are risks invovled no matter what type of stem cells you use, what delivery method and where you go. Surgery is surgery. My only strong suggestion is that you avoid Embryonic Stem Cell Therapy (everything I've seen regarding embryonic stem cells results in cancer, umbilical stem cells have been used to treat things like leukemia for at least 18 years with no increase in cancer risk), and avoid a place called StemCell Biotherapy in Tijuana (SCB) - this is NOT the place we went to but I have heard a lot of bad things about it.
BTW, our daughter is also 2.5yrs, she is close to sitting and standing by herself (post therapy) but is non-verbal and cannot feed herself. She also has microcephaly and epilepsy.
Best of luck with the research and hope I can be of assistance!

vaibhav

Geeta Shroff in Delhi is treating CP. our son has been there twice. we are going again in August 2009.The improvement is global in our case till now.I highly recommend this place. her number is 011 - 46067822.

My_Angel

thanks a ton....

JohnTheGreek

Hello everybody,
My name is John and I am from Athens Greece. My son is almost 8 now and he was born with CP in 2001 full term baby with no other problems. He is the sweetest and kindest boy in the world for me and we have been looking for any kind of treatment since he was born. We have been doing PETO therapy (Hungarian method very popular in Europe and USA these days) since 2004 and we had some great results. Since 2002 I found info about stem cells and although we did not keep his own when we had our second baby (boy again) we saved his stem cells because we are pretty sure that we will use them soon. Dimitris, our oldest has been supported since birth with private physio, ergotherapy, speechtherapy, kinisiotherapy, PETO, horse riding, aqua therapy and anything else that could help without taking away his childhood. We are doing everything after discussion with our doctor and when he needs a break we STOP for 2-3 weeks + summer. Dimitris is very smart (athetoid CP) with mild epilepsy episodes since birth but he has improved big time. What we have learned through the years is that we made and we will make right decisions and wrong decisions(we are not perfect) and we have always beleived in our son's strength. Our doctor is one of those that never will say something positive. Since birth she told us that she did not know if he would walk, talk, be smart, blind or anything else..Dimitris did not walk but he talks(with issues) he can seat and stand by holding a table, he is smarter than me, and he attends regular school. When he was born he was on a coma for 21 days with survival chances less than 5% but he did it and I was betting on that, and for some reason I was optimistic since day one. My wife and I we cried a lot, we were angry, we tried to find someone to blame, we were scared but all that ONLY FOR FEW DAYS..after he woke up from the coma we discussed and we said that we will devote our lives to him in order to improve his life and the tears, and the pitty do not belong in our family. If we allow the bitterness to cover our lives we would not or will not help our boy. I knew about stem cell since 2002 but last year I found this: www.xcell-center.com and I had a lot of research and discussion with specialists regarding everything...e.g. is it possible to develop a tumor? is it possible to face side effects stronger than the possible effects? is it painfull? are the stem cells taken from his hip polydynamic(can they transform to brain cells?), what are the statistics? After I got all the answers we had a long discussion with my wife and we decided to do it. Dimitris had his stem cell transplant in July 24, 2009 and we are waiting to see if there will be any positive results.
1. A tumor is almost 100% unlikely to develop from his own stem cell
2. No side effects are minor..maybe a headace and nausia the first 24 hours
3. No it is not painfull at all'
4. Yes the cells can transform to brain cells
5. 30% of all patients do not have ANY positive effect or 70% has some kind of effect. Results can be observed after 3 months the earlier up to 9 months the latest and imrovement can be ongoing in addition to other treatments.
What I want to mention is that the center in Germany do not accept anyone..that means that they do not target our pockets..they are located inside one of the best hospitals in Germany and the quality level of the facility is GREAT!!!
MOST IMPORTANT THING: they do not promise anything..it might work it might not...it is better not to expect anything! The cost can be from 12.000 euros up to 15.000 euros according where you are coming from..DO NOT USE THE XCELL TRAVEL CENTER THEY ARE NOT GOOD. MAKE THE PLANS ON YOUR OWN.
One last thing to all of us parents who are living blessed with a CP child: our very pessimistic doctor told us for the first time just few months ago that we should be very positive about the future and that she strongly believes that within the next 5 years our son will be CP FREE!! That is great right? and let me tell you..I can wait even 10 years...no problem!!

My_Angel

Hi John,

thanks a ton for ur reply.....i wish dimitris all the very good luck and hope there's a lot of improvement, post, his stem thrapy.

my daughter is 2.5 , still with no neck control, sitting..etc. Just out of curiosity, at what age did ur son hold up his neck and start sitting independently? also, u said, he goes to a normal school, so does speak now??

thanks again for all the info......
wishing him a very fast recovery.....

vaibhav

Hi,
We have a 2.5 year old suffering from CP. our experience with stem cells is this:

We’ve been to Doctor Geeta Shroff in Delhi twice, once in November 2008 and in April 2009. We are now there for our third visit. The first visit was for 2 months where injections were given every day for 6 days a week followed by physiotherapy. Subsequent visits are for 1 month and injections are again given 6 days a week. Dr. Geeta’s email id is geetashroff@hotmail.com and her number is +91 11 4606 822. she uses embryonic stem cells.

The best link to proof that her stem cells work is this - http://healthcarehacks.com/the-embryonic-stem-cell-proof-is-in-my-brain-sca n

Yeah we’ve seen some really good improvements in the last few months. Especially cognitive and speech which are now near normal. Before treatment (he was 20 months old then) my son had 5 – 8 single words. Now he speaks in sentences, can count till 10 and occasionally recite half a poem!

Motor – there was a lot of spasticity in his hand and legs. That has reduced about 40% but not completely gone yet. He could turn on his stomach with great difficulty before the treatment. He can now turn in a few seconds, sit up, crawl (bunny hop) all over the house, get down the bed, and sometimes make an attempt to stand up holding on to something.

There was difficulty in swallowing earlier. That is almost gone now. He can now also drink with a glass in his hand – earlier this was not possible due to the spasticity.

I have SPECT scan reports done before and after the treatment and it is obvious from the same that out of the 4 problem areas, only 2 exist after the treatment. So I guess that’s clinical evidence that it works and not – “hopeful parents beginning to see things because they want to see improvements”.

Stem cells- just go for it – for any reputed stem cell treatment. It’s the best possible thing you can do for your son. The earlier the better. You can speak to another parent whose son used to get 7 – 8 seizures a day and does not get any. His number is +91 98370 64001. You can speak to me on +91 9820049613 anytime irrespective of the time difference. We are in the same boat

If you wish to speak to someone in the USA who has had their son treated for CP with Dr. Geeta Shroff – please call up Mr. Raman Bahl on + 190 12189882. email raman.bahl@gmail.com.

my email id is vaibhav.tiwari@utvnet.com.

God bless our children!

Vaibhav

SashNash

Hi there...
My son is 6 and has quite severe mixed tone quad' CP. I'm looking into the whole stem cell therapy thing and i'm wondering if there's any difference between the two main companys in China and the one in Germany, anyone have any idea?!
We're in the UK, so Germany would be a cheaper option for us, athough obviously the cost is not important, but the lower the cost the sooner we can go!
I am still looking into the possible side effects or risks, but other than mild, I've found nothing to put me off! (I'm looking at the bonemarrow option).

Is the treatment permanent does anyone know, or is further treatment needed to boost or maintain any progress made? May sound like a silly question, but i've read so much, it can all end up spinning your head out!

I'm not expecting a miracle cure or anything, I would just like my son to have a bit more independence, as at the moment he cannot communicate(other than eye pointing really), sit, hold his head up or support himself. He can't really grasp for objects very well, or hold onto things for long, but he's a bright boy so he's really trapped by his physical disability. He loves to walk, which is lovely, but he needs full support, so it's backbreaking work for me! He really is a joy, he's so happy and gorgeous... He just deserves the chance for more, so i'm basically checking and double checking that there's no reason not to go ahead! Just not quite upto 100% yet!

If anyone has any positive or negative advice or info then please do shout.. I'm new to this site and to talking on forums about our life, but this is so important it's meant that change is a must!
Thanks for reading X

Sasori

Hi. There is no reason why changes caused by stem cell therapy would be lost WHEN YOU'RE TALKING ABOUT A ONE OFF INJURY. If it were a degenerative disease like COPD or MS, which is always going to get worse, then you would need repeated or much larger doses of stem cells. Of course the treatment hasn't been around to prove that completely, but I've not heard of anyone regressing who has had treatment for CP. You can get multiple treatments - in China they do them over a 2 month period. In Mexico, they suggest at least 6 months between treatments. I've seen no research to show that one approach is more effective than another, and you should be put under no pressure to return for further treatments! There is a kid from Texas who has had awesome improvements, after multiple treatments with Ramirez, mother reckons it is because she took him back for treatments before the 6 month period was up. Again, no science to back it up, so I guess it is personal preference and what your wallet will allow!
As I understand it the clinic in Germany (XCell? something like that) is actually licensed by the government to provide treatments. (BTW, the Ramirez in Mexico has a cert from Mexican government for him to perform stem cell therapy so....).
Anyway, using your own stem cells, there is no reason at all for any complications apart from those normally associated with the procedure required to extract the stem cells from the bone marrow in the hip, and the injection to get them into the blood stream or else a lumbar puncture. If this option were available for my daughter, I'd be going for it, but our daughter being only 3 is as I understand it, still too small for this. I'm happy to be corrected on that point?
My only niggling concern is that I did look up a German company at one stage and they ended up being connected with StemCell Biotherapy in Tijuana. Not the clinic we went to - but SCB has been red flagged by the community at www.stemcellpioneers.com - a very useful website and I suggest you check it out, as you will likely find other people who have actually already been to that clinic and can fill you in. Good luck!

SashNash

Hi there...
Sounds like you've done extensive research! There's so much to look up, consider and choose! Thank you for your views and time...
I'm a bit put off from the clinic in Germany, Call it just a gut feeling, but I could be totally wrong! More research needed! Especially if there's a chance they're connected with StemCell Biotherapy or anything. I thank you for that information, I'd actually read about that in one of your previous posts, and I think it's why i'm worried about taking Asher to a reputable clinic. It's only through reading posts on here that i've found anything negative about any clinics, so very helpful!
My memory's like a sieve, I don't know how you can remember all the details! I need to talk to parents that have been, I seem to be going round in circles a bit, but I am sure I want to go ahead, especially now we're having trouble with Asher's pelvis twisting because his muscles are too tight (we're being reffered to a specialist which could lead to an op on his soft tissues, anyone know anything about this sort of thing?), I so do not want his spine twisting, I think the clock's ticking!
Which clinic did you go to?
Thanks again.

SashNash

I don't know if this is helpful or not, but i've found a report on all the offshore clinics offering Stem cell theapy outside the US. I'm finding it slightly confusing, but it's good to find something that refers to and compares all of the clinics.

http://www.cellmedicinesociety.org/index.php?option=com_content&view=catego ry&id=49&layout=blog

Seems at first glance there is no perfect answer, Am I too fussy!? I will have to rely on other parents experiences and recommendations.

Sasori

That is an interesting report. I only recognise two clinics' names and what I know of StemCell Biotherapy certainly meshes with what the report says!
We went with Dr Ramirez in Tijuana, via the Steenblock Research Institute. Check out:
http://www.ramirezdelrio.com/
http://www.strokedoctor.com/
I can give you the email address of the guy, Dr Charles Lacroix who co-ordinates patients with these two clinics. I don't like to post these details straight away, as I do not wish to promote any particular clinic above another - I've only been to one so our opportunity to compare is limited! - so I post these details in response to your direct question only.
Again, I encourage you to join www.stemcellpioneers.com - it is the best forum I know of regarding stem cell therapy, for all conditions, and where you have the best chance of finding a lot of people who have been to a lot of different clinics.
Interestingly I recently went to a seminar run by ASCF and they support xcell in Germany because 'they are the only licensed company to be doing treatments' they concentrate on degenerative diseases, but do treat CP too. I had begun to think it would be better if we used our daughter's own cells for treatment rather than UC if we could do it. But a comment Dr Steenblock made in direct response to this question on the stemcellpioneers website has changed my mind back to sticking with the clinic we've been to already in Tijuana (Ramirez).
There ARE some bad clincs out there so you SHOULD be careful - you do need to do as much research as you feel necessary. There are people who have gotten sick from bad clinics so you are not being picky, you are being careful and that is good. No-one can make the decision for you, no medical professional can recommend for you as there is just not enough research been done to satisfy the mainstream. So if you want to be one of the pioneers of this treatment, you have to realise there are risks involved, and you should only go ahead if you really feel that the potential benefits far outweigh the risks in YOUR situation. Tough, I know! Good luck, and keep researching. I'm happy to share any and all of the research and results I am aware of.
Re twisting pelvis/spine - a friend of mine, another CP mum has developed the 'Charley Wrap' which has cured her daughter's scoliosis. Not sure if this will help you but you can find out more at www.charleywrap.com BUT hold off for a week or so I think there is something wrong with the website and I've told her about it. If I remember I'll post again once she's fixed it. If you like, private message me, with your email address and I can email you the info I send out to people kicking off their research.
Cheers and good luck!

Paigie

Hi there, i know what you mean by going around in circles, i did for a while to, i felt quiet stupid actually as i couldn't get my head around it.. but we are getting there now. my daughters 11yrs now and she is getting curviture of the spine now so i feel its getting urgent now. we are looking at umbilical cord and her own bone marrow via lumba punchure. i am not keen for paige to have the catheter administering process as i know what shes like with that sort of thing. hence we are going lumba punchure way, there are not that many doctors that do it that way...hope that makes sense...

vaibhav

The only therapy that can ever give major improvements is certainly stem cells. from our experience also I know for a fact that it works - sometimes phenomenally well. we have done an enormous amount of research and have spoken to almost every stem cell doctor who is practising. The ones who can certainly be trusted (for Cerebral Palsy) are Ramirez/Steenblock in Mexico, Beike in China, Xcell centre in Germany and from our personal expereience Dr Geeta in India. we have done stem cell treatments 3 times. I also think one should do multiple treatments within months and results could be dramatic. time is the enemy so the faster you get it done the better. never let cost be a factor. if anyone wants irrefutable proof that stem cells do work then I can mail spect scan reports before and after the treatments. I challenge the biggest authority on the planet - take one glance at the brain's reports - the improvement is great and leaves no scope for debate.

God bless all children.

Vaibhav

Sasori

Re XCell in Germany, please check this link before seeking treatment with them.
http://www.stemcellpioneers.com/showthread.php?p=8398#post8398
I can also vouch for Ramirez/Steenblock in Mexico - as can multiple families in New Zealand.

SashNash

Hi again,
Some interesting posts, and really helpful info, thank you...
We dont have UC blood, so our option is the bone marrow route, I dont know if that narrows our choices of clinics or not! I need to find out more about this and our options, as i'm not sure that it would be the best option for Asher. I think for now i'm just trying to find a clinic I feel happy with, but maybe i'm doing it the wrong way round! aghh! ha ha.
I'm really interested in the 'Charley wrap'! sounds great, and I might know few parents that might also be interested! Ill look it up when their website is in action!
I have been browsing through the forums on the website you recommend, therer is alot of info on there, once you find what you're looking for! Maybe I just haven't quite got the hang of their site yet! ha ha... I must join and post... I've not talked to other parents online like this before, it's great! I usually spend hours doing all my research for various reasons, but talking to other parents is shedding light on things it might have taken me hours of trawling to find on my own, if at all! Why have I not done it before! ha ha... Oh well...
I'm running out of steam at the moment i think... Need a fresh head...
I'll post any new info I come across, if I do , which i hopefully will!
Head frazzle, have to go!

Thanks again... Hugs to all our Angels Xx

Sasori

Charley Wrap site back up and running!!!

www.charleywrap.com

Sasori

Lol SashNash - it's info fatigue! Every parent I talk to who suddenly gets a whole lot of info gets it. Good nights' sleep is the best cure!
Re UC blood - in Mexico we used DONATED cord blood. It comes from American baby's donated cord blood, stored in American banks and processed by American labs, we then take it over the border with us to have it injected in Mexico. Ridiculous really - you only go literally 30 seconds over the border. But thems the rules! So don't let that stop you.
I did look into XCell because I thought using Daryl's own stem cells would be best, but Dr Steenblock puts up a compelling argument for UC over your own bone marrow on the stemcellpioneers website. Look for the 'Ask The Doctor' thread, I think it was September last year. You can also search for threads/posts that include specific words.
You'll be most interested in the CP threads, which are under Neurological Disorders.
Good luck - there is HEAPS to read on that site! But most of the users are really nice, and Barbara and Jeannine that run it are FULL of info about clinics all over the place. Stem Cells are their lives.
Sleep well!

vaibhav

Hi SashNash,

do also do some reasearch (like we all have!) on the capability of stem cells to turn into the required type (in our case brain cells/neurons) the more primitive the stem cells the greater the ability to turn into the required type. Thus embryonic are 'theoretically' considered the most dynamic, followed by fetal, then cord blood and then bone marrow. Thus bone marrow derived, since they are autologous are the safest but 'theoretically' the least potent. ramirez/steenblock is most promising and the most experienced in the world in treating CP. If you can swing it then that's the place to go!no doubt about that!

God bless all children!
Vaibhav

SashNash

Hey guys,

Thanks for your posts, just a quick one... I spent a few hours researching again yesterday, and i'm really considering ramirez/steenblock... I'm not going into this lightly though, so haven't finished my research, but i'll send off the medical evaluation form to them today... My gut feels good with the thought of taking Ash there!
Thanks for your thoughts and advice, i really feel like i'm making head way now, where as I was feeling bogged down by the minefield of information, atleast I feel like I have a bit more direction now!
I dont know if its because the weather's turned, it's all wet and miserable here! but i'm feeling a bit sluggish and poo... It is quite emotional reading/watching and trawling through all the info and imagining with all hope what the future could hold, but the hurdles I have to cross to get us there! Oh I hate negative days! But atleast it's positive that i've covered a good bit of ground...
I really appreciate the time you've given to reply...

Hope your worlds are not quite so grey as mine today... Tomorrow's a new day hey! ha ha...

Love and hope Xx

Sasori

Hiya, hope your day is better today? That's the same feeling we had before taking our daughter to Steenblock/Ramirez - they really seemed to care about the kids, rather than the $$$$
If it makes you feel any better, we're forecast snow tomorrow here....

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