Stem Cell Therapy for Katelyn

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tcjk

New member
Hello, I'm new to all of this so please forgive my unknowing of all thing postable! I have been researching stem cell therapy for my 12 year old daughter Katelyn. She has spastic deplegia CP, suffers no mental handicaps and does walk on her own. That being said her gait is very energy consuming, knees bent, lots of side to side momentum and toe first foot slapping walking. She wants to try the stem cell therapy because she thinks it will be her cure.
I have looked at both Xcell in Germany and Dr. Steenblock in California. (And, did you know Dr. Steenblock can do bone marrow stem cell therapy in his California clinic?)
I guess I'm stuck trying to figure out the differences in the treatment of the bone marrow stem cells after they have been removed. Does Xcell expand them after they've been isolated from the other cells whereas Dr. Steenblock's system is to just centrifuge them down to a mixture of cells and then IV infuse them?
I also wonder about (for CP) infusing nasally to bypass the blood brain barrier as opposed to the lumbar puncure. Does this method bypass the blood brain barrier? How? I would appreciate any answers, suggestions and or remarks.
Thanks!
Katie's mom
 
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tysmom

New member
Dr. Ramirez

Dr. Ramirez is doing fresh stem cells 65 million in his clinic in Mexico he is getting amazing result from celebral palsy.

Note from Barbara -
Dr. Ramirez is a forum sponsor. You can click on INBICTO-ORTHOLAB on the Home Page to reach his site.
 
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K

Kaci's Mom

New member
tcjk said:
Hello, I'm new to all of this so please forgive my unknowing of all thing postable! I have been researching stem cell therapy for my 12 year old daughter Katelyn. She has spastic deplegia CP, suffers no mental handicaps and does walk on her own. That being said her gait is very energy consuming, knees bent, lots of side to side momentum and toe first foot slapping walking. She wants to try the stem cell therapy because she thinks it will be her cure.
I have looked at both Xcell in Germany and Dr. Steenblock in California. (And, did you know Dr. Steenblock can do bone marrow stem cell therapy in his California clinic?)
I guess I'm stuck trying to figure out the differences in the treatment of the bone marrow stem cells after they have been removed. Does Xcell expand them after they've been isolated from the other cells whereas Dr. Steenblock's system is to just centrifuge them down to a mixture of cells and then IV infuse them?
I also wonder about (for CP) infusing nasally to bypass the blood brain barrier as opposed to the lumbar puncure. Does this method bypass the blood brain barrier? How? I would appreciate any answers, suggestions and or remarks.
Thanks!
Katie's mom
Click to expand...
Hi,
Dr. Steenblock's clinic in California works on only adults (except for the 16 year old girl he treated for CP a while back). The reason is this: Because he only uses a local anesthetic during the bone marrow extraction and the patient MUST hold completely still, he doesn't feel younger children are good candidates for this method (in his clinic). Believe me, I've asked him several times. Dr. Ramirez is great ,VERY experienced, and DOES also do bone marrow stem cells in Mexico. They are expanded and reinserted into the body a week later. Clinics in the States are pretty limited on what can be done to the bone marrow cells- no thanks to the FDA.
 
T

tcjk

New member
tysmom

tysmom, Thank you so much for your reply! A question for you: What do you mean by 65 million "fresh" Stem cells? Does this mean they have not been expanded? Don't we want them expanded?
I did just get a packet from Dr. Steenblock and haven't been through it yet. Katelyn is only 12 so my understanding is he won't do the procedure on her. She really doesn't want to go to Mexico as she says, "Mexico is having some problems right now." We are however, still looking at Dr. Rameriz clinic and the one in Germany; Xcell (I almost hate to admit it). I sent off a ton of questions to Xcell earlier today and one was to put me in contact with some families who have gone there. I also sent an email to user name dlbein asking for any new updates.
Again, thanks for taking the time to reply. It is greatly appreciated!
Katie's mom
 
T

tcjk

New member
Kaci's mom

Hi Kaci's mom,
Thank you for your reply. May I ask, did you take Kaci to Dr. Rameriz? How many times? Is this something that must be done every 6 months to a year? I'm still just trying to get a good feel for all of this stem cell stuff. Years ago I checked on it and they were experimenting with shark stem cells so I put it on a shelf until now. I am also very thankful for this forum. I've not been able to find anything else like it anywhere.
I know many of us are in the same boat with our children. We want to do absolutley everything to make our children's life as "normal" as possible. Katie has asked me many times "why can't I just walk normal, why did God make me this way?" So, my search for her will only end when she is finally satified with her normal, whatever that may be. I don't every want Kate to look back on her life and ask "Why didn't you at least try that mom?" She keeps saying she thinks she will be a miracle. I told her she already is!
Thanks again for taking the time to reply!
 
K

Kaci's Mom

New member
Hello Katelyn's Mom,
Kaci's been to see Dr. Ramirez 3x in 3 years (almost exactly). I chose to do her treatments that way because of many reasons: time of year mostly- less germs, no school. Dr. Ramirez is REALLY a "Pioneering" part of what stem cell science is today. With your reference to "shark embryo" stem cells, Dr. Ramirez also runs the International Spinal Cord Regeneration Center (which is right next door to the clinic in which umbilical cord stem cell treatments are done) http://spinal.siteutopia.net/intro.htm. Dr. Ramirez worked along side Dr. Kuhnau -see http://www.awarenessmag.com/marapr8/MA8_KUHNAU.HTML -(and I'm thinking is probably one of the first doctors to experiment with stem cells) at this clinic for years until he died in 2002 at the age of 91.

I know how things are. My daughter is very smart and at the top of her class in 3rd grade. However the motor and speech impairments she has makes her very mad at the doctor that caused her "medical mistake" (I figure she has the right to know how it happened) and she definitely has a strong opinion about it. There's been no question in my mind that I need to do whatever I can to "fix it". My daughter already talks about when she will be having her next treatment.

As for the "dangers" of Mexico. I will admit it creeps me out to go in and out of there, but really it's not as eventful and the news makes it sound- you can see the clinic from the boarder when you're crossing. And NO the clinic isn't luxurious- modest at best. But when you're looking for experience with umbilical cord stem cells and treating kids with CP, Dr. Ramirez has had the most- I would bet on it.
 
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dschroed

New member
Hi - I am personally going to Germany in 1 month for treatment to try and help my MS symptoms. I will be glad to tell you of my experience when I return. I too was waivering between Germany and Mexico but chose Germany for a couple of reasons. The first was I never received any contradictory information from X-Cell. The price and procedure always remained the same. The Mexican clinics changed their price 2 times and then could not give me the same information about treatment, whether I would recieve my own bone marrow cells or umbilical cord cells. When I ultimately said no, the price all of a sudden dropped significantly and they tried to tell me they never said umbilical would be involved. I also spoke to some experts here that said avoid Mexico at all costs not only becuase of the drug cartel problems but because of possible un sterile condiditions in some clinics (not all). They also said to be leary about Germany becuase they do not know too much about them and their procedures.

Another reason is I spoke to 2 people who took their children to Germany for treatment and could not be happier. These people were not solicited by the clinic but by personal friends. One child has CP (7 years old) and the other had brain and spinal damage from an accident (18 years old). I will post my experience and results.
 
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barbara

Pioneer Founding member
I wonder how happy the parents are of the child who died while getting treatment at X-Cell and the other child who almost died? X-Cell Clinic is not just on my list of places not to go. Their standing in the scientific community is poor at best.

Would you care to tell us who the experts are that gave you the information? I do agree with them that some clinics are to be avoided, but I also believe that many believe that because X-Cell is in Germany that this somehow makes them safer or better which is something that is not true whatsoever. I haven't heard of any children dying in Mexican clinics or becoming seriously ill. When they told you to be leery of X-Cell as well, I believe they were basing their opinion on the fact that X-Cell has failed the scientific community by not showing any efficacy to their treatments whatsoever. Time for X-Cell to pony up or stop ripping people off with their sales techniques designed to convince desperate patients that they too will get great benefits like most everyone else that goes there. Utter nonsense.
 
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tcjk

New member
tysmom

Hi tysmom, What do you mean by "fresh stem cells 65 million"? Fresh as opposed to what?
Thanks,
Katie's mom
 
T

tcjk

New member
dschroed

Thanks for your info! I commend you on all the research you have done and wish you well! I will look forward to hearing how the therapy went, how the clinic, doctors and staff were and how the trip in general went. I yowill hope and pray for the best in all of these things and will await your entries detailing how the therapy has improved your well being! Take care...
 
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dschroed

New member
Barbara - I will not share their names as they did not give me permission to. Maybe the news shouldn't publish articles about drug cartels killing innocent people in Mexico or my choice might be different. The Washington Post's article from 2008 about 2 people becomng gravely ill after SCT in Mexico was an influence in my decision, too.

X-cell never guaranteed me success. They also didn't raise and lower their price several times or try to call me 20 times in one day. The fact is, it is a risk. I know that. The same risk I'd have in Mexico, the Dominican Republic or Panama. Weighing the risks involved, I chose Germany. In the end, I just wish that you could respect that decision just as I respect your decisions to travel to Tiajuana.
 
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barbara

Pioneer Founding member
It's not about Tijuana vs Germany dschroed. There are never any names of experts or evidence of studies or trials with this company. There is no one in the scientific community that supports this company that I am aware of. Please do not make this a personal thing with me. I report what I know and what others send me. You have made the personal decision to support this company and that is all there is to it. Like I said before, ask the parents of the child who died and the one who almost died how happy they are. This should never have happened. The company is supported by a fabulous marketing scheme that many buy into. I simply do not and you will NOT find me understanding why patients choose to select a company where patient safety could be at risk.
 
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tcjk

New member
I looked up this article from the Washington Post 2008 (dschreod wrote about it in his last post). It was a very interesting read... I would reccomend others who are dealing with questions and decision making on where to have stem cell therapy done to read it.
I also know that saftey could be at risk (and is) at any clinic you may decide on. I think it's a risk many of us are willing to take because of the hope of what the stem cell therapy can and may do for us.
I also know that the death of the child and near death of another you speak of at the Xcell clinic were due to the procedure that was done there not the therapy and or lack of saftey issues. I also know this procedre is now not being done anymore and the physician is no longer there.
I too am leaning towards the Xcell clinic and a friend of mine is also taking their son there in February. Their travel plans have already been arranged, we are still working on getting our daughter's passport.
 
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barbara

Pioneer Founding member
Please explain to me how the death of the child was not due to the therapy or lack of safety issues, but was due to the procedure. Isn't the procedure part of the therapy? Isn't someone employed by a company the ultimate responsibility of the company? I hope that the prices at X-Cell are near to nothing because otherwise the lure makes no sense to me.

I attended the Age Management Conference last week. Guess what company was not in attendance? There were doctors from all over the world sharing ideas and giving lectures. These are doctors that feel comfortable with their peers, who like to exchange ideas, who do safety and other clinical studies and don't pretend to know how to treat every disease in the world successfully with stem cells.
 
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dschroed

New member
Please explain how you know all of the facts involved with this tragedy. An unfortunate fact in any medical procedure is the risk involved. Did you see the story of an otherwise healthy man who went to donate part of an organ for his brother and died from complications? Was that due to poor safety in the hospital that had performed that procedure hundreds of times before that? Unfortuantely, that kind of thing happens everywhere in even the simplest of procedures. I am not going to sit hear and say X-cell had no fault, I do not know. You, however, cannot say that you know all of the facts involved. You are relying on a story from a UK tabloid that said stem cells caused the death. The center didn't deny that the tragedies happened. They said it was complications from a invasive procedure unrelated to SCT. The fact of the matter in this is your negative comments are pushing people away from SCT altogether in some cases. If you do not know anything about them, simply state that and move on. Just because they do not share info with you is no reason to berate them. If you get some concrete facts, then share them. I have personally spoken to someone who took a 7 year old there last year and has stated that they plan to return being happy with the way they were treated and doubly happy with the results. I want to be able to share my experience when I go soon in order to help someone else and not for any other reason but I do not feel you will let that happen. I'm sure this will be my last post but I had to say how I feel. The facts in the story "Injections of Hope" (Washington Post 2008) are very telling for some of the opinions on this site.
 
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Jeannine

Pioneer Founding member
dschroed

I am going to step in here and reply to your (should I call them accusatory?)references to the Washington Post article. Why do you think Barbara has been adamant about being very cautious about where you go for treatment? After what happened to us we try very hard to assure those who are heading for a treatment to be fully aware of the dangers. I'm not sure why you're obsessed with the article and attempting to accuse us of wrongdoing in order to justify your reasons for choosing x-cell. I'm not aware that anyone has tried to talk you into going anywhere else.

You are free to post about your results so I don't know where you got the idea that you would somehow be prevented from doing so.

For anyone who is interested, here is a link to the article dschroed is referring to. The article distorted much of what we said to the reporter.

http://www.washingtonpost.com/wp-dyn/content/article/2008/08/29/AR2008082902517.html?sid=ST2008082902753
 
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barbara

Pioneer Founding member
For those that didn't read the comments

Yikes! Put this to rest please. The best way for X-Cell to pony up to the bar is to do safety and efficacy studies. For the last time, I am not alone in my opinion of this company. They are the one that needs to do the proving, not me. Until they do, I remain unconvinced that they have safe, effective treatments for almost every disease known to mankind.


If you didn't read the comments to the Washington Post article, here is mine. I made it immediately after the article came out. This article is why I no longer give interviews. The media simply cannot be trusted to not editorialize.

Your Comments On...
Injections of Hope
A vast human experiment is afoot. And no one is taking good notes.
- By Brian Vastag

I told Brian when he interviewed me that I believe in stem cell therapy wholeheartedly. Jeannine and I founded www.stemcellpioneers.com and it has become one of the largest patient moderated forums for stem cell discussion and support that there is. We even wrote a book about our experience because we feel that stem cell therapy gives patients with chronic and terminal diseases like we have the best hope there is.I am not opposed to getting treatment in foreign countries as we are very slow to get things going here in the US. What I wish to expose is companies that are not using safe methods and following established protocols. Dr. Feinerman is a good doctor in my opinion, but Mr.Nabavi did not follow his protocols. I think Dr. Feinerman was as much a victim as I was. I was hesitant to give an interview because I do not want stem cell therapy viewed in a bad light. The article is good at exposing some bad companies, but Brian should do a follow up and report on the success stories and the companies that are reputable and truly caring. There are many. Barbara Hanson
9/2/2008 1:44:31 AM

Here's another good comment made about the article:

emirapper wrote:
This article was very ignorant and one-sided. Brian has selectively ignored offshore clinics that have published their data in peer reviewed medical journals, as well as ignoring peer reviewed publications, including Phase III clinical trials demonstrating many of the procedures used offshore are useful.

Anyone can go to pubmed dot com and search stem cell clinical trials and find out that many of the procedures offerred outside the US by offshore clinics are actually based on solid science being performed and validated in the US. The only difference is that in the US patients have to wait to enroll for trials that offer the possibility of hope, whereas outside of the US people can pay for the possibility of hope.

In conclusion I am saddened that this piece was published which gives a false and incorrect impression.
9/2/2008 9:57:09 AM



ANYONE that would make a decision where or if to get stem cell therapy based on this article is not making an informed decision.
 
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brooklyn03

New member
Brooksmom

My daughter is 7 years old with Cerebral Palsey and Septo Optic Dysplasia. She saw Dr. Ramirez for her 1st stem cell treatment in February of 2010. She had the cord blood fresh stem cell injection. Before stem cell Brooklyn was considered legally blind, she couldnt walk, talk, or see, and she wore leg braces....... And suffered from Diabetes Insipidus!!!
Now almost 10 months later, after stem cell she can see her way almost anywhere!! She walks with NO walker or leg braces!!!! She is eating better and just an all together more healthier child!!! She had a 2nd stem cell treatment done in October 2010. I believe that treatment along with the other has taken care of Brooklyn's Diabetes!!!!! She in 3 weeks has slowly went down to less than half of her normal doses of Desmopressin her meds. for her DI. We go again nin two days to hyave her sodium levels checked again to make sure that we dont need to decrease it more!!... I cant wait for the results!!! Stem cells and Dr. Ramirez have been such a blessing to us!!
 
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brooklyn03

New member
Mexico Stem Cells

Dr. Ramirez is now taking new patients
60-65 million fresh stem cells to all patients!!!!!!!!


He is a forum sponsor. Those interested can click through to his website.
 
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