can any one help

[joe]

please i have a son two years and half old he has cerebral palsy and iam really interested to do stem cell to him i wish if u can help me with a name of a center or a hospital that i can trust noting that i have emailed x-cell center in germany before and i sent them all the documents they need and then they told me that the stem cell process is a available to my son . but i was surprised later that the center closed due to death of a baby.

i wish if some one can give me a trustful hospital or center . x-cell center told me that he doesn't give any guarantees but i had heard that the real hospital gives you a percentage of success before the stem cell process .

wish i can find a helpful hand this is my first thread wish you all the best and thanks

 

[barbara]

Joe - I am glad you took the plunge and made your first post. I will send you a list of clinics that you can contact by private message. We do not endorse any doctor or clinic on this forum. The list only includes those clinics that we feel have been reliable as far as having some success and responding well to patient concerns and questions. It is difficult to wade through the claims some clinics make and testimonials are not the most reliable way to decide where to take your child either. Do as much digging as you can and be fair in your assessments. Find out the kind of stem cells that will be used and also how they are harvested and infused. Small children may not tolerate some types of treatments as well as others. It is a big decision to make, I'll grant you that, but your main concerns should be the safety and efficacy of the treatment. X-Cell was closed because they really didn't address either one adequately.

 

[marto83]

Hi barbara,

We had a similar experience with the xcell center. We considered it because it's the closest clinic to us (I'm from the UK) but we had a lot of mixed reviews about it. I guess we are lucky it got closed down.

Do you mind sending me your list of reliable clinics? At the moment I'm at a loss about where to start researching first.

Thank you in advance

Martin

 

[barbara]

Marto83. I sent you a list via private message. Let us know how your search goes.

 

[JAKmom]

Hi Barbara,

I have been following this forum off and on for over a year now trying to gather as much info as possible for our decision. I'm really interested in taking my daughter to see Dr. Ramirez in Mexico. Is there anyway I can contact him or his clinic directly or is a third party always involved?

Thank You,
Elizabeth

 

[barbara]

I have his personal e-mail and will send it to you in a private message. I don't see why you would need to go through a third party unless Dr. Ramirez himself insists on it. He is sometimes difficult to get a response from so be persistent.

 

[AQUARIUS]

List of reliable clinics

I have his personal e-mail and will send it to you in a private message. I don't see why you would need to go through a third party unless Dr. Ramirez himself insists on it. He is sometimes difficult to get a response from so be persistent.

Hi everybody,

Barbara I have been following this forum for years trying to gather information for my CP child but this is the first time I am sending a message. I would also like to have a list of reliable clinics in order to decide what to do. We live in Greece and we had stemcell treatment at Xcell center-Germany in May 2008...nothing happened. I hope and pray every day for better treatments for our children...

 

[barbara]

I can send you a list which I will do by private message, however, the clinics on the list may or may not be treating CP. When I say reliable, what that means is that we have few complaints from our membership about the clinic, they participate when asked to do something such as host Ask the Doctor and that they have some success with their treatments. We don't endorse any clinic or doctor on the list. My suggestion is to do your homework diligently. If something seems to be too good to be true, it probably is and that is where many were duped by X-Cell. Good luck in your search.

 

[AQUARIUS]

I can send you a list which I will do by private message, however, the clinics on the list may or may not be treating CP. When I say reliable, what that means is that we have few complaints from our membership about the clinic, they participate when asked to do something such as host Ask the Doctor and that they have some success with their treatments. We don't endorse any clinic or doctor on the list. My suggestion is to do your homework diligently. If something seems to be too good to be true, it probably is and that is where many were duped by X-Cell. Good luck in your search.

Barbara,

Thank you for your message. I have already made some research..I have been doing that for the last four years! Xcell center seemed a good choice three years ago but we all know what happened....things change...I will check your list and decide what to do. Thanks again for your help!

 

[barbara]

I am sincerely hoping that a formal study for CP can be done in the U.S. by the end of this year. It is certainly something that I am pushing for.

 

[CherieC]

I am sincerely hoping that a formal study for CP can be done in the U.S. by the end of this year. It is certainly something that I am pushing for.
__________________
First treatment in 2007. Pioneering ever since.

Barbara


Barb Thanks for helping us fight for our children! How can we help you push for this to happen?

Cherie

 

[pink7]

CP and Autologous stem cells

According to some reports Dr COX of Texas was supposed to have a clinical trial for CP children using Autologous Bone Marrow stem cells. Anyone heard anything about this.

 

[barbara]

What is Dr. Cox's first name and where is he located in Texas? A good start would be to simply call or write him and see what is happening. Very often researchers and doctors are good about responding. If he isn't proceeding, maybe he has a handle on who might be going to throw their hat in the ring.

Texas right now seems like it is sizzling. There are several groups lobbying for more clinicals and more research. Sometimes, just making it known that CP is something that is in dire need of more studies and treatment options, especially for those that do not have the cord blood stored, may get the attention of someone key to being able to begin such efforts.

Jeannine and I have been very vocal for years about COPD treatment and we did get doctors and researchers interested in trying to treat it.

 

[pink7]

CP children and Stem cells

Dr Charles Cox directs the Pediatric Trauma Program at the UTHealth Medical School/Children’s Memorial Hermann Hospital in the Texas Medical Center. He did a clinical trial on children with Traumatic Brain Injury using the Bone Marrow stem cells.It showed a good outcome for the children.

 

[Kaye]

Pink

Here's a link to the Clinical Trial at Texas. Dr. Cox is listed and the Principal Investigator and it has an e-mail address at the bottom.

http://clinicaltrials.gov/ct2/show/NCT01251003?term=University+of+Texas,+TBI&rank=4

 

[barbara]

Great work ladies. I will send him an e-mail and would encourage others to do so as well. It's a start.

 

[pink7]

CP children and Stem cells

Thanks Barbara and Kaye. Hope there will be a clinical trial soon.

 

[ydehai]

list of clinics

Hi Barbara

My son is four and half years old and has CP. I was looking for the stem cell treatment information. I am wondering whther you can share with me the list of clinics that you mentioned in the posts.

Thank you very much in advance.

 

[barbara]

I no longer keep a list of clinics because there is too much change going on. Also, each patient reacts differently to treatment. What might work for one, may do absolutely nothing for another. My advise is to look at the Ask the Doctor section. Most all of them have a question or two about CP. Contact these doctors and ask them all the same questions. Do not rely on sales pitches, websites, overly enthusiastic testimonials, or others that may contact you stating that their child has had fabulous improvements and there is only one doctor that is really treating CP with success.....blah, blah, blah.

Another ploy is that the treatment given is the best in the world. The only one that uses XXX type of stem cells, the only one to be able to administer billions of stem cells, the only one that does this that and the other thing ad nauseam. Keep in mind that this is your child, not you. I would avoid experimental programs that are not administered under some type of independent review board or process if the clinic does not have several years of pediatric treatment experience that you can verify.

Do talk with other parents you feel you can trust. Do keep your expectations realistic. Do not seek treatment at clinics that do not have a sufficient, verifiable history of treating children. Use common sense. If something seems too good to be true, it almost certainly is. Do continue to post your concerns or questions here so that others can chime in with their experiences if they wish to. Read through some of the other threads in the CP section as well. Please keep us posted on your plans.

 

[CherieC]

Buyer beware!

Barb I agree and you even have to be careful when you get on boards and ask parents because I am a member of a group for parents with CP children and have found that even when you talk to parents you might not get the real scoop! I asked a question and one mother went from saying she was going to try the treatment one week to her son was walking the next couple weeks! This was a place in India and the Mother was so pushy that I felt like there was something in it for her! It is sad that parents can not get honest direct answers from parents who have been there without some of these clinics putting PR plants on these boards. I really felt like this was plant to push the clinic!
I have come to the conclusion that you have to be your childs advocate and because this is our children who cannot decide for themselves we have to make certain that we are not taking chances with their lives our health! I want the best for my child like every other parent but I am not going to put them in harm to "weed" out the safe treatments!