Cerebral palsy and other brain injuries

[Kaci's Mom]

Hello all,
I am starting this thread because my daughter who is 5 1/2 has cerebral palsy. She suffered an hypoxemic insult at birth, which in basic terms means her brain was deprived of oxygen. Because this was a medical mistake, we were made fully aware of "what to expect" for the years to come- which is a lifetime of therapy, adaptions,... oh man, I could so go on, but I type too slow.
Fortunately I am very tenacious and have spent most of this past 5 1/2 years finding the best ways possible to help with her recovery. Besides the countless hours of every kind of therapy (physical, occupational, speech, hippotherapy (on a horse), massage) we have also undergone about 200 hours of hyperbaric oxygen therapy. We've been out of the Country twice to do some of these things. She has (in my opinion ) some of the best therapists around! But you can only do so much with therapy. I am so grateful that Kaci is so smart (in kindergarten and already reading at a 2nd grade level- if I may brag?) and the most determined kid EVER!!! She is walking with a walker and forearm crutches (and we've been told she'd never walk). Infact, it's a rather grim picture doctors tend to paint of someone with brain damage.

So finally after all these years of pushing through what "Western Medicine" deems as the "protocol" to treat a brain injury, we have decided it's time to try the stem cells. After countless hours of scouring the world wide web- I can, with confidence, say "I am highly knowledgable in Stem Cells 101". I wish I had discovered this forum when I began my search of "useful information" (Those who belong really ARE the STEM CELL PIONEERS). I could have saved so much time weeding through the useless information, or should I say mis-information that tends to get mixed in amongst what's actually "happening" around our world. Don't get me wrong, I really do appreciate our country. But it does seem a little bit arrogant to not give other nations credit where credit is due. When it comes to stem cell science, the United States Government either REALLY DOES think they know it all, or they just don't want us to know what they actually know- how sad. I feel lucky to know that there are people such as the ones belonging to this forum- that are brave enough to "step outside of the box" to pave the way for the rest of us. Thank You!

We have Kaci's stem cell transplant sceduled for June 30th in Mexico. We can't wait-wish it were sooner! But we want to be healthy. And being in kindergarten with all of the "kid germs" flying around really doesn't give us much guarantee of that happening. So until then... GET BETTER EVERYBODY and thanks for being the first!!! I'll be back with the UPDATE.

[Sasori]

And we are following Kaci's Mom's trip with interest and high hopes! We live in New Zealand so are MILES away from where everything is happening but are dying to get over there and get some treatment and have the application etc underway. The big frustrating part will be fundraising to get over there! Our daughter has severe CP, at 19mths now she is unable to roll, crawl, or speak, and only eats soft lumpy food and thickened liquids - however, they did tell us she'd probably never eat at all, let alone walk or talk! So we're doing pretty well really! She smiles her wee face of and started laughing about a month ago, which almost makes us cry each time LOL!:D
So we have big but hopefully realistic hopes for stem cell therapy. We're not expecting miracles but we really hope to see a clear improvement, perhaps for her to balance enough to sit by herself, or to see a bit better so she can focus on our faces, or for her swallowing to improve so she can have a more interesting variety of foods, or, do we dare hope? - a reduction in her seizures. We understand any improvements will probably (most definitely!) be less than we hope for, but any improvement is the start of a positive road for us. The various therapies she receives help to teach her how to USE the brain she has, but this could give her 'new' brain to use! (In a way). How amazing! So why not? Hope to be back to you all with some AWESOMELY POSITIVE NEWS in the not too distant future!

[Kaci's Mom]

Hello everyone. We've made it back from our trip to California today and Kaci got her stem cell in Mexico yesterday. As some may recall, we we're scheduled to have her treatment on the 30th of June. We got a call from SRI 2 days before we were supposed to leave with news that the stem cells that Kaci was supposed to receive had to be used for an emergency- but that the new ones she would be getting were VERY new (2008's). Any way, we ended up leaving for San Diego on Sunday the 29th instead (we had a little mini vacation for a few days before the BIG event). SRI is supposed to reimburse us for the extra cost we incured to change our flights.

So yesterday we had a driver pick us up and take us to Tijuana- which by the way, wasn't as scary as I had imagined. The trip from our hotel took about 30 min. The trip back took about 2 hours! The whole stem cell experience was definately an experience! The clinic is DEFINATELY modest, but seemed clean. I'm sure things would have gone much more smoothly if Kaci hadn't been against having the IV put in. But finally the 3rd try things went well. She had 4 vials of cells which added up to 6 million. And YES for those who have wondered, they were somewhat clear in color. I asked again why it was that all the other stem cells I had seen pictures of from other companies had some sort of color in the vials? I was told that it was because these were COMPLETELY pure and that stem cells from other places weren't as pure (sounded like a good answer to me!).

So, right after she got done at the clinic (which took about an hour), We headed back to San Diego. During the 2 hours back, we saw a difference in Kaci's behavior that was kind of strange. First she got really tired. Then she got really hungry (she had eaten about an hour before the treatment). By the time we got back to the hotel she was full of energy and looked like she was ready to run a marrathon. She also wanted to eat again!
It's been that way off and on all day today too!

Well that's all for now!

[Sasori]

I had read in Payne's paper about fluctuations in appetite but had thought that only occured with subQ injection. Interesting that there was such a dramatic change in her behaviour (but seemingly not 'negative' change). Good luck for the coming weeks and keep us up to date!:D

[Kaci's Mom]

Hello-
I just wanted to add to something that I wrote yesterday about our "stem cell experience". My husband informed me that the stem cells used for Kaci were indeed opaque colored in the vials (he was the one who actually thawed them out in his hands. They DEFINATETLY were NOT clear like water. (I had read question #8 that was asked to Dr. Payne about that.)

Also, after Kaci's IV was inserted the nurse pulled out about 5-7 ml of her blood which then was taken an spun to separate the platelets. The platelets were then added to the remainder of the bag of sailine and put back into her. I was told that this was being done as opposed to the use of manitol to help open the blood brain barrier.





Hello everyone. We've made it back from our trip to California today and Kaci got her stem cell in Mexico yesterday. As some may recall, we we're scheduled to have her treatment on the 30th of June. We got a call from SRI 2 days before we were supposed to leave with news that the stem cells that Kaci was supposed to receive had to be used for an emergency- but that the new ones she would be getting were VERY new (2008's). Any way, we ended up leaving for San Diego on Sunday the 29th instead (we had a little mini vacation for a few days before the BIG event). SRI is supposed to reimburse us for the extra cost we incured to change our flights.

So yesterday we had a driver pick us up and take us to Tijuana- which by the way, wasn't as scary as I had imagined. The trip from our hotel took about 30 min. The trip back took about 2 hours! The whole stem cell experience was definately an experience! The clinic is DEFINATELY modest, but seemed clean. I'm sure things would have gone much more smoothly if Kaci hadn't been against having the IV put in. But finally the 3rd try things went well. She had 4 vials of cells which added up to 6 million. And YES for those who have wondered, they were somewhat clear in color. I asked again why it was that all the other stem cells I had seen pictures of from other companies had some sort of color in the vials? I was told that it was because these were COMPLETELY pure and that stem cells from other places weren't as pure (sounded like a good answer to me!).

So, right after she got done at the clinic (which took about an hour), We headed back to San Diego. During the 2 hours back, we saw a difference in Kaci's behavior that was kind of strange. First she got really tired. Then she got really hungry (she had eaten about an hour before the treatment). By the time we got back to the hotel she was full of energy and looked like she was ready to run a marrathon. She also wanted to eat again!
It's been that way off and on all day today too!

Well that's all for now!

[Sasori]

Have just read Payne's answers too, very interesting. Has Kaci's appetite etc settled back down again? ;)

[Henry Young]

What type of stem cells were given? Where (country) did the stem cells come from? Were the stem cells purchased or donated? Was there any certificate of validation for absence of genetic diseases within the stem cell genome? Dr. Young

[Kaci's Mom]

Have just read Payne's answers too, very interesting. Has Kaci's appetite etc settled back down again? ;)

No, Kaci is still eating all of the time. And as far as her energy level is concerned, she's definately not lacking in it.

[barbara]

I want to welcome you back and let our members know that Kaci will be debuting on our www.seachangeforlife.com site wearing her stem cell t-shirt. This little girl is a natural cover girl. Really adorable. Jeannine will be putting her picture up by tomorrow so don't miss it.

As far as the appetite being increased, I think this is something a lot of people experience, especially those that had poor appetites previously. Glad to hear you finally got there. Sounds like you really had to make some quick adjustments. Thanks for letting us know you are back safe and sound.

[Jeannine]

I just posted our new model's photo wearing the "Stem Cells...the Wave of the Future" t-shirt if anyone is interested in seeing this adorable little girl who has recently gone for stem cell therapy.

http://www.seachangeforlife.com/Stem_Cells_The_wave_of_the_future_p/041608wave.htm

[Kaci's Mom]

What type of stem cells were given? Where (country) did the stem cells come from? Were the stem cells purchased or donated? Was there any certificate of validation for absence of genetic diseases within the stem cell genome? Dr. Young

To answer your questions... sorry I didn't notice them sooner.
The type of stem cells were umbilical cord (whether they were CD34+ or CD133+ or something else- to be honest, I really don't know). The cells were donated by the mothers of healthy babies born in different hospitals in the USA. And finally, I was told that the lab had problems with their computers so there has been a delay the certificates reaching SRI- but as soon as they get them, they'll send me a copy. (BELEIVE ME- I've been all over that question with them).

[rosech44]

Kaci Is An Absolute Doll, And So Very Brave-----

Big Healing Hugs----

[Henry Young]

Dear Kaci?s Mom, It depends on the stem cell types as to the response you can expect. For your daughter?s condition it would be better if the cells were frozen at -75C than in liquid nitrogen (ask them). More things will need to be repaired than can be repaired with either hematopoietic cells (CD34+) or mesodermal cells (CD133+). If you try another time ask them to have their donating laboratories slow freeze the cells at -75C to a final concentration of 7.5% (99.999%) DMSO. That will get you the cells you will need for neuronal repair (neural stem cells and pluripotent stem cells). In addition, all the cells given must be from females. Male cells may be ambivalent now, but come puberty you will see some serious gender issue problems in your daughter. So, special order what you want, if at all possible. May I wish you the best for Kaci and her future. Take care, Dr. Young.

[Kaci's Mom]

Dear Kaci?s Mom, It depends on the stem cell types as to the response you can expect. For your daughter?s condition it would be better if the cells were frozen at -75C than in liquid nitrogen (ask them). More things will need to be repaired than can be repaired with either hematopoietic cells (CD34+) or mesodermal cells (CD133+). If you try another time ask them to have their donating laboratories slow freeze the cells at -75C to a final concentration of 7.5% (99.999%) DMSO. That will get you the cells you will need for neuronal repair (neural stem cells and pluripotent stem cells). In addition, all the cells given must be from females. Male cells may be ambivalent now, but come puberty you will see some serious gender issue problems in your daughter. So, special order what you want, if at all possible. May I wish you the best for Kaci and her future. Take care, Dr. Young.

What KIND of SERIOUS gender issue problems at puberty are you talking about???? Now you're scarring me!!!!! Kristin

[Kaci's Mom]

Kaci Is An Absolute Doll, And So Very Brave-----

Big Healing Hugs----

Thank you!!! And YES she is!!!! We're VERY PROUD of her and all that she's accomplished over the past six years!

[rosech44]

Thank you!!! And YES she is!!!! We're VERY PROUD of her and all that she's accomplished over the past six years!


And you have every right to be------Hugs--Rose

[Henry Young]

Dear Kristin,

Please send me an email at young.he@yahoo.com and we can discuss cross gender implantation experiments further. Take care, Dr. Young

[barbara]

Dr. Young, It may be that the doctor that did the therapy for Kaci was well aware of these things or there may be professional differences of opinion and he would not agree with what you are saying. I can't really say one way or the other. I don't want anyone on the forum panicking over this, but it is good that we are learning to ask more questions about what we are getting when we have therapy. It is not nearly as simple as it might seem.

[Kaci's Mom]

I would DEFINATELY like to see the literature to back up what Dr. Henry Young Ph.D has to say. I have contacted Kaci's doctors and they assure me there's no need to worry. I have a lot of confidence in Dr. Ramirez MD since he's had 30 years of experience in the stem cell field- he was also an associate of one of the finest medical minds of the 20th century, Dr. Wolfram W. Kuhnau MD- until he died in 2002 (he treated over 60,000 patients during the course of his career). He actually opened the clinic where Kaci went- in which Dr. Ramirez is now the Medical Director.

[Henry Young]

I would be happy to share my curriculum vitae with anyone that would like to see it. Just send an email to young.he@yahoo,com and I will send it to you electronically. I have all my manuscripts on pdf files. Choose the ones you would like to see and I will send them to you as well.

The gender differences I have referred to relate to data we have from our (18+ years of) work in developing serum-free defined medias to grow our version of adult-derived stem cells, i.e., totipotent stem cells (BLSCs), pluripotent stem cells (Tr-BLSCs, ELSCs, Tr-ELSCs), and germ layer lineage stem cells (Ectodermal stem cells, Msodermal stem cells, and Endodermal stem cells). What we discovered (quite by accident) was that female stem cells did not respond to our medium when a concentration gradient of testosterone was an added ingredient. Likewise, male stem cells did not respond to our medium when a concentration gardient of estrogen and prgestrone were present in the medium. We finally devised a "universal" basal medium for both genders with supplements that included the apropriate endocrine reproductive hormones depending on gender of the individual cells being grown. The cells we used to test the media were clones derived from single cells by repetitive limiting serial dilution clonogenic analysis.

I would also be happy to send an embryological / stem cell differentiation chart (published in a peer reviewed journal, Anatoical Record, in 2004) to anyone that would like a copy. This explains, on a single page, the differenetiation potential of the different types of stem cells. The names given to the stem cells are based on their differentiation potential, not on their tissue of origin. The reasoning behind this particular nomenclature is that the same stem cells (although in different ratios) are found in almost every organ and tissue of the body, and most of the time these stem cells are in an inactive - quiescent state (they need to be activated to perform their function). Dr. Young

[Henry Young]

I would like to apologize to Kaci?s Mom and others in this forum for my sarcastic posting from yesterday. While I stand behind everything I said I could have been more diplomatic in my approach. And for that I apologize. I get a bit testy when I am not feeling well, which is occurring right at the moment. I am in the worst lupus crisis I have ever had. Instead of one or two systems being affected ? all my organ systems are being affected. I took morphine for the pain several weeks ago, 100 mg every four hours, but it makes me ?loopy? and my lucidity goes out the window. Moreover, the side effects are not very nice, especially at such a high dose. I am off morphine now because of the side effects, and now I am in constant pain. Every thread of my body is screaming to me that it hurts and wants me to make it stop and I choose not to.

Let me give you a little history of my scientific background so you know where I am coming from. I am considered by many in my field as one of the original pioneers of non-hematopoietic adult stem cells.

I began my research on non-hematopoietic adult stem cells at a time (1970?s) when these particular cells were thought not to exist. The only cell types that were published at the time were progenitor cells, the immediate precursor cells to adult differentiated tissues. Progenitor cells have a defined biological clock before they are pre-programmed to senesce and die. Moreover, they form only a few, if not just a single cell type. Unfortunately, precursor cells were designated in the literature as ?stem cells?, and some of my peers have perpetuated this in their publications even to this day.

My first exposure to biological research was working in a lab that was attempting to transplant adult differentiated tissues into animals. There were one of either two end results to the experiments? 1) the animal would flat out reject the tissue as foreign and get rid of it (tissue rejection), or 2) the animal would wall off the transplant with scar tissue and sequester it. The body did not know what to do with the foreign tissue.

During this time I had identified a cell or groups of (quiescent) cells, unrecognized previously, that were sequestered in the connective tissues surrounding bone, cartilage, and within the connective tissues of skeletal muscle, dermis of the skin, adipose tissue, and surrounding blood vessels. These particular cells would become activated upon wounding the animal with the result that you could see a change in the material immediately surrounding the cells. The cells would then release themselves from their organ connective tissue compartments and home to the sites of injury. There they would completely replace the missing tissues. I stared publishing that work in the late 1970?s.

I next ventured to a laboratory where I could identify the unknown material histochemically (biochemical identification using histological tissue sections). I discovered that the material was composed of sugar residues called glycoproteins, glycosaminoglycans, and proteoglycans. I could identify each subtype of these materials by their particular staining patters. In addition, that there were other glycoproteins that appeared to stimulate these strange cells to act to repair the tissue.

I next ventured to a laboratory where I could learn to isolate and indentify the particular material I had seen histochemically. I accomplished this feat as well as learning how to culture different types of cells and how the cells would react under various culture conditions.

From there I went to a laboratory that cultured human cancer cells, i.e., osteosarcomas (bone cancers) and chondrosarcomas (cartilage cancers). I learned to use antibodies to recognize various components of the cells, both inside the cells and outside the cells. Moreover, we could pick out a single cancer cell from a group of cells based on its own particular staining pattern.

I then matriculated to where I am today. I set up a research laboratory to identify both the unknown cells and the particular factors that acted on these unknown cells. It took me three years to understand how to isolate the cells, grow the cells outside the body in cell culture, how to freeze the cells without killing them, how to clone the cells from single cells using medium conditioned by factors released from the cells themselves, etc. I then submitted a grant to the National Institutes of Health (NIH) proposing to do the process we had just completed. Their response was ?adult stem cells do not exist, therefore your ideas are flawed and we will not support your research?. One reviewer even called me ?lunatic fringe? and that my ideas were in the realm of science fiction. I turned around and published the data in a peer reviewed scientific journal.

We cloned another set of these cells from a different species of adult animal, performed the same work following our previous protocols and isolated a similar population of cells with the same functions. I again applied to NIH for funding and was turned down, because ?adult stem cells do not exist; only progenitor cells exist?. We published that data as well.

Our area of the southeast received a hurricane-generated flood that lasted for a long time. Our research labs were without power for two weeks and I lost everything - all my clonal cell lines, conditioned medium, etc. Afterwards, I began anew and isolated and cloned, from single cells, another set of these particular cells from yet a different species of adult animal (adult rat). I had a collaborator in France label the clones with a genomic marker (a gene sequence for an insect beta-galatosidase, something that is never found in mammalian tissues). Because it is a gene sequence embedded in the DNA of these cloned stem cells, each time the cells divide the resultant cells have the same amount of beta-Gal as the original cell. Since beta-Gal is an insect sequence, antibodies can be easily generated against it and now we have a label that can track the cells, both in culture and when they were transplanted into the animal.

This was about the time that Dr. Thompson and Dr. Gearhart published on the existence of human embryonic stem cells with the ?plasticity? to form any cell in the body and essentially having ?immortality?, Suddenly, I was not quite the lunatic that mainstream scientists (from Harvard, Stanford, Johns Hopkins, etc.) thought I had been. Maybe adult stem cells did exist, but certainly, they did not have the plasticity of embryonic stem cells.

Since their publications came out in 1998 and 1999, we have published on adult-derived germ layer lineage mesodermal stem cells (also called mesenchymal stem cells), adult-derived pluripotent epiblast-like stem cells, and adult-derived totipotent stem cells. We have cloned them from single cells, had them labeled with a genomic marker, characterized them using a wide array of protocols, and tested these cells in various animal models of disease, i.e., type-I diabetes, myocardial infarctions, bone marrow transplants, vascular ischemia, infertility, and Parkinson?s disease, just to name a few of our ongoing projects.

What separates me from most of my peers is that I am a ?splitter rather than a lumper?. In other words, I want to know everything I can about individual cell types within a population that is giving a desired effect, rather than accepting the desired effect without questioning what individual cells are doing to achieve the desired effect.

If I have offended you, I am sorry and want to apologize to you. I just want to help and get information out there for ?users? of the technology to ask their respective caregivers. That is all. Dr. Young

[Kaci's Mom]

Dr. Young, you have not offended me- you have just made me question the possibility that I may have done something "horrific" to my child and now there's a chance that I may have ruined her life instead of helped it- somewhere down the road.

The reason I question what you have said is because I have spent COUNTLESS hours researching this treatment and tried VERY hard to find ANY reason why she shouldn't be treated with stem cells. After finally being convinced there were no real risks involved with it- days after her treatment you drop that "bomb" on me and suddenly I'm feeling ridden with guilt that I may have made a BIG mistake. Now I feel the dread of what could happen to her in a few years. As a parent that is VERY hard to take. Not to mention, the reaction my husband will have if I tell him of this. He will probably NEVER forgive me if something happens to his little girl- because he trusted my judgement.

Any way, thanks for the information. Maybe it'll help some one in the future.

My best regards to you and your health.

Kristin





I would like to apologize to Kaci?s Mom and others in this forum for my sarcastic posting from yesterday. While I stand behind everything I said I could have been more diplomatic in my approach. And for that I apologize. I get a bit testy when I am not feeling well, which is occurring right at the moment. I am in the worst lupus crisis I have ever had. Instead of one or two systems being affected ? all my organ systems are being affected. I took morphine for the pain several weeks ago, 100 mg every four hours, but it makes me ?loopy? and my lucidity goes out the window. Moreover, the side effects are not very nice, especially at such a high dose. I am off morphine now because of the side effects, and now I am in constant pain. Every thread of my body is screaming to me that it hurts and wants me to make it stop and I choose not to.

Let me give you a little history of my scientific background so you know where I am coming from. I am considered by many in my field as one of the original pioneers of non-hematopoietic adult stem cells.

I began my research on non-hematopoietic adult stem cells at a time (1970?s) when these particular cells were thought not to exist. The only cell types that were published at the time were progenitor cells, the immediate precursor cells to adult differentiated tissues. Progenitor cells have a defined biological clock before they are pre-programmed to senesce and die. Moreover, they form only a few, if not just a single cell type. Unfortunately, precursor cells were designated in the literature as ?stem cells?, and some of my peers have perpetuated this in their publications even to this day.

My first exposure to biological research was working in a lab that was attempting to transplant adult differentiated tissues into animals. There were one of either two end results to the experiments? 1) the animal would flat out reject the tissue as foreign and get rid of it (tissue rejection), or 2) the animal would wall off the transplant with scar tissue and sequester it. The body did not know what to do with the foreign tissue.

During this time I had identified a cell or groups of (quiescent) cells, unrecognized previously, that were sequestered in the connective tissues surrounding bone, cartilage, and within the connective tissues of skeletal muscle, dermis of the skin, adipose tissue, and surrounding blood vessels. These particular cells would become activated upon wounding the animal with the result that you could see a change in the material immediately surrounding the cells. The cells would then release themselves from their organ connective tissue compartments and home to the sites of injury. There they would completely replace the missing tissues. I stared publishing that work in the late 1970?s.

I next ventured to a laboratory where I could identify the unknown material histochemically (biochemical identification using histological tissue sections). I discovered that the material was composed of sugar residues called glycoproteins, glycosaminoglycans, and proteoglycans. I could identify each subtype of these materials by their particular staining patters. In addition, that there were other glycoproteins that appeared to stimulate these strange cells to act to repair the tissue.

I next ventured to a laboratory where I could learn to isolate and indentify the particular material I had seen histochemically. I accomplished this feat as well as learning how to culture different types of cells and how the cells would react under various culture conditions.

From there I went to a laboratory that cultured human cancer cells, i.e., osteosarcomas (bone cancers) and chondrosarcomas (cartilage cancers). I learned to use antibodies to recognize various components of the cells, both inside the cells and outside the cells. Moreover, we could pick out a single cancer cell from a group of cells based on its own particular staining pattern.

I then matriculated to where I am today. I set up a research laboratory to identify both the unknown cells and the particular factors that acted on these unknown cells. It took me three years to understand how to isolate the cells, grow the cells outside the body in cell culture, how to freeze the cells without killing them, how to clone the cells from single cells using medium conditioned by factors released from the cells themselves, etc. I then submitted a grant to the National Institutes of Health (NIH) proposing to do the process we had just completed. Their response was ?adult stem cells do not exist, therefore your ideas are flawed and we will not support your research?. One reviewer even called me ?lunatic fringe? and that my ideas were in the realm of science fiction. I turned around and published the data in a peer reviewed scientific journal.

We cloned another set of these cells from a different species of adult animal, performed the same work following our previous protocols and isolated a similar population of cells with the same functions. I again applied to NIH for funding and was turned down, because ?adult stem cells do not exist; only progenitor cells exist?. We published that data as well.

Our area of the southeast received a hurricane-generated flood that lasted for a long time. Our research labs were without power for two weeks and I lost everything - all my clonal cell lines, conditioned medium, etc. Afterwards, I began anew and isolated and cloned, from single cells, another set of these particular cells from yet a different species of adult animal (adult rat). I had a collaborator in France label the clones with a genomic marker (a gene sequence for an insect beta-galatosidase, something that is never found in mammalian tissues). Because it is a gene sequence embedded in the DNA of these cloned stem cells, each time the cells divide the resultant cells have the same amount of beta-Gal as the original cell. Since beta-Gal is an insect sequence, antibodies can be easily generated against it and now we have a label that can track the cells, both in culture and when they were transplanted into the animal.

This was about the time that Dr. Thompson and Dr. Gearhart published on the existence of human embryonic stem cells with the ?plasticity? to form any cell in the body and essentially having ?immortality?, Suddenly, I was not quite the lunatic that mainstream scientists (from Harvard, Stanford, Johns Hopkins, etc.) thought I had been. Maybe adult stem cells did exist, but certainly, they did not have the plasticity of embryonic stem cells.

Since their publications came out in 1998 and 1999, we have published on adult-derived germ layer lineage mesodermal stem cells (also called mesenchymal stem cells), adult-derived pluripotent epiblast-like stem cells, and adult-derived totipotent stem cells. We have cloned them from single cells, had them labeled with a genomic marker, characterized them using a wide array of protocols, and tested these cells in various animal models of disease, i.e., type-I diabetes, myocardial infarctions, bone marrow transplants, vascular ischemia, infertility, and Parkinson?s disease, just to name a few of our ongoing projects.

What separates me from most of my peers is that I am a ?splitter rather than a lumper?. In other words, I want to know everything I can about individual cell types within a population that is giving a desired effect, rather than accepting the desired effect without questioning what individual cells are doing to achieve the desired effect.

If I have offended you, I am sorry and want to apologize to you. I just want to help and get information out there for ?users? of the technology to ask their respective caregivers. That is all. Dr. Young

[Henry Young]

Dear Kaci?s Mom, The information I conveyed to the forum was not meant to scare anyone, it was for information purposes only. We have found discrepancies with expected results versus actual results. In many quarters, it was believed that a stem cell is a stem cell is a stem cell and that gender does not mater. In some instances, that is quite true, i.e., formation of hematopoietic stem cells and most somatic cells, for instance. However, in some tissue, differences between the genders appear at puberty and the changes are hormone driven. However, in your daughter?s case we do not know what somatic cells the injected stem cells became or will become in the future. Only time will tell. Moreover, by the time your daughter reaches puberty, there should be significant research available to assist in correcting any inadvertent mistakes that MIGHT have happened. Just keep this potential in the back of your mind. Without the stem cell transplant, I am sure your daughter would not be at the level she is today. So you should be commended for your decision to do the transplant. If nothing happens in the future, more the better. If something does occur, you are ready to deal with it. For the time being just enjoy being with your daughter.

The information I provided to the forum was a suggestion to those planning to receive umbilical cord transplants. That is to request of their physicians that if they were female they receive female cord blood cells or if they were male that they receive male cord blood cells because of potential gender differences. The onus is then on the physician to correct any potential problems with the transplants. Dr. Young

[Sasori]

about the gender of donors. I am planning treatment for my daughter, and will bring this up with the clinic I am going through. However, Kaci's Mom, if they can't guarantee cells from a female donor, that will not stop me getting the treatment. My daughter is more severe than Kaci, and is not expected to live much into puberty. I hope that should any problems occur that they can be controlled by hormones. I'd rather risk having a high functioning transvestite child than a low functioning child who would not have any chance of considering her sexuality....I think! However, Dr Young, it would be great if you could hazard a guess at the kinds of problems we might be looking at? Lack of menstruation? Facial hair? Or something completely different?

[Henry Young]

Dear Sasori's Mom,

Without knowing the exact type of stem cells they will be translanting or how the cells were processed it would be difficult, if next to impossible, to hazard a guess. However, from what I know about cord blood - if only hemtopoietic cells are used then no problem.

If only mesodermal stem cels are implanted, then you might be looking at facial hair, broad chest, heavy muscuar arms and legs, taller than normal stature for your family, maybe some ambiguity with resoect to external sexual characteristics, depending on where the cells ended up in the body. As you had mentioned, the more undesirable cell types could be controled with hormones.

If only ectodermal cells are implanted (forms brain and spinal cord cells) the the child might be more of an analytical thinker (male) than a creeative thinker (female).

If only endodermal cells are implated, then usually nothing out of the ordinary occurs.

If there are mixtures of the germ layer lineage cells and/or ELSCs and/or BLSCs, then you may find variations of all of the above.

This also comes into play with any females getting transplants between the ages of birth and menopause and any males getting transplants anytime during their lifespan: for males it could possibly be gynomastia (development of breasts), strange looking external genitalia, female hair distribution pattern, etc,

Dr. Young

[Kaci's Mom]

Hello-
Well, six weeks have passed (tomorrow) since Kaci got her stem cells. I'm surprised the time has went by so fast- especially because she was NOT to be in the "sun" for 6 weeks after her treatment- that's pretty hard to do in the summer, I'll tell ya! Besides that, the fact that the 6 week mark means she can finally have some sugar, my kid is beside herself with excitement! Good timing too since her birthday is next week and all she can talk about is cake and ice cream. But I will still continue to keep her on an ALL ORGANIC diet- she actually seems to like it (yuck!).

I am happy to report that her appitite continues to be huge. This is VERY good considering she really didn't have one prior to the treatment. I've concluded that what has probably happened is that her "feeding" issues have actually improved- meaning she's able to chew and swallow more efficiently. Plus she's eating at a speed that seems "normal". I actually asked her yesterday about how she used to feel about eating before her stem cell treatment. She said that it was harder and that she was hungry a lot. But because it was hard to eat- it took her a long time to do it. Kaci has gained a pound in a month- that's amazing considering she only usually gains a few pounds a year!

Another exciting change has been with her speech. Her speech therapist- who is actually an "oral motor" specialist, sees Kaci on a weekly basis. She is amazed everytime we visit her with how Kaci continues to improve in her speech clairity.

We've also noticed a change in her muscle tone. Kaci's massage therapist cannot believe how loose her hamstrings have become- that is unreal considering the poor child has physical therapy 9 hours a week (and those things are ALWAYS super tight!!). Which by the way, the PT is also VERY impressed with her sudden progress.

Kaci's fine motor skills are also making an improvement. The other day she drew the best picture she's ever drawn (we entered it in our County Fair the other day!). And her writing is getting smaller- yet still legible.

So far all seems to be going very well for Miss Kaci! I can't wait to see what the next few months may have instore for her! She is showing a sudden interest for independence, which is always a GOOD sign- I think.

Kristin




Hello everyone. We've made it back from our trip to California today and Kaci got her stem cell in Mexico yesterday. As some may recall, we we're scheduled to have her treatment on the 30th of June. We got a call from SRI 2 days before we were supposed to leave with news that the stem cells that Kaci was supposed to receive had to be used for an emergency- but that the new ones she would be getting were VERY new (2008's). Any way, we ended up leaving for San Diego on Sunday the 29th instead (we had a little mini vacation for a few days before the BIG event). SRI is supposed to reimburse us for the extra cost we incured to change our flights.

So yesterday we had a driver pick us up and take us to Tijuana- which by the way, wasn't as scary as I had imagined. The trip from our hotel took about 30 min. The trip back took about 2 hours! The whole stem cell experience was definately an experience! The clinic is DEFINATELY modest, but seemed clean. I'm sure things would have gone much more smoothly if Kaci hadn't been against having the IV put in. But finally the 3rd try things went well. She had 4 vials of cells which added up to 6 million. And YES for those who have wondered, they were somewhat clear in color. I asked again why it was that all the other stem cells I had seen pictures of from other companies had some sort of color in the vials? I was told that it was because these were COMPLETELY pure and that stem cells from other places weren't as pure (sounded like a good answer to me!).

So, right after she got done at the clinic (which took about an hour), We headed back to San Diego. During the 2 hours back, we saw a difference in Kaci's behavior that was kind of strange. First she got really tired. Then she got really hungry (she had eaten about an hour before the treatment). By the time we got back to the hotel she was full of energy and looked like she was ready to run a marrathon. She also wanted to eat again!
It's been that way off and on all day today too!

Well that's all for now!

[barbara]

What wonderful news. I want to wish Kaci a Happy Birthday next week. Mine is also next week. What day is hers? I also am very proud of her sticking to her organic diet. I eat organic as much as possible. Think about all the chemicals we ingest when not eating organic and it's pretty scary. I think she deserves an extra piece of birthday cake for being such a good kid. I would send her some of mine, but after the candles are lit, I am sure it will be nothing but a ball of flames.

[Mysty119]

It is so great to hear of your daughter's improvements. You should make little notes as time goes on. You know----what she's done or been able to do and the date it happened. Because down the line, someone will ask and you may not remember some of it. And, I'm sure your daughter would love to have this to look back at. May I ask her age?
She will certainly have a Happy Birthday now! And as far as Barb's birthday cake????? You can be sure it is tofu. ;) That stuff might even be flame retardant!!!!

[barbara]

Very funny Bea. I don't think they make tofu cake, but you're probably right that it would be flame retardant if they did. My favorite is Devil's Food made with duck eggs that are supplied to me daily by my "girls". That's about as organic as you can get with eggs, believe me. Why I really wanted to reply is to let you know that you can see Kaci on our www.seachangeforlife.com site in the t-shirt section. She is our model for one of the stem cell t-shirts. A real doll.

[Mysty119]

Awwww. She is sooooo adorable!!!! Just wanna run up and kiss her cheekers.!

[Kaci's Mom]

You guys are sooooo sweet!!! Kaci's birthday is Aug. 20th- she'll be the BIG 06. Happy Birthday to you too Barbara!!! As far as I can tell, you Leo's are AWESOME!!!!
Kristin

[Mysty119]

I have 3 grandchildren all having birthdays in the same week in August. My oldest grandson's (15) is the 20th. My youngest grandson's (12) is the 25th and my grandaughter's (5) is the 27th!!!!! And, two of my sister's were born 2 years apart; but the dates were a week apart---the 19th and the 26th.
My, my---there were a lot of people 'busy' around Thanksgiving time!!!! :rolleyes:

[Aussie Mum]

Dear Kristin,

Thanks so much for sharing news of Kaci's treatment. I've been watching with interest. I'm really touched by her insights on eating / appetite. My little guy Johann is a dreadful eater - 2 years on a nasal feeding tube as we fought against a tummy g-tube then a slow process with bottles, purees etc. He's tiny for his age and still has bad reflux and is very texture sensitive. I'm thinking if stem cell treatment can improve his eating, that alone is a big win for us.

Keep us posted on her progress and happy birthday to her!

Cheers,
Adrienne

[Kaci's Mom]

I mentioned a few posts ago that Kaci had entered "the BEST picture she's ever drawn" in our County Fair over the weekend. I am excited to say she got 2nd place! Of course I'm pretty sure that EVERY kid who entered their art in the fair got a ribbon, but I was impressed that hers was a 2nd place one. She, however was NOT as impressed as I was- Kaci thought she should have gotten 1st! She's a pretty funny kid!

Kristin

[barbara]

Fantastic. I hope she knows she has a fan club on this forum. Tell her we have already awarded her the blue ribbon for being such a courageous kid.

[Kaci's Mom]

Fantastic. I hope she knows she has a fan club on this forum. Tell her we have already awarded her the blue ribbon for being such a courageous kid.

Thanks Barbara, I will.

[Mysty119]

Of course she feels she should have gotten first prize. She's very confident in herself and that's a good thing. I haven't seen the picture and I think she should have gotten first prize too!!!!!;)

[Sasori]

Just letting you know that Kaci is in my 'success stories' section of the links for my soon to be up and running website for CP in New Zealand. I'm also starting a charity trust to help raise funds for my daughter to get treatment, and for other families over here to do the same.
Keep up the good work, and as Bea(??) mentioned, do keep a detailed diary. I don't know how many times a friend of mine with a 5yo CP boy has said 'gee I should have kept a diary so I could be of more help to you!'. Congratulations Kristin, you have done an awesome job to hunt down the treatment, organise it AND keep her on a diet! You're an awesome Mum! (Mom).:D:D:D:D

[michaelsdad00]

:) My son has CP is 8 1/2 and has received 4 separate transplants of human umbilical blood derived stem cells in Mexico. We are planning for a 5th next springtime.

QUOTE=Jeannine;4612]I just posted our new model's photo wearing the "Stem Cells...the Wave of the Future" t-shirt if anyone is interested in seeing this adorable little girl who has recently gone for stem cell therapy.

http://www.seachangeforlife.com/Stem_Cells_The_wave_of_the_future_p/041608wave.htm[/QUOTE]

[barbara]

Michael - Can you tell us anything about his before and after condition?

[michaelsdad00]

We arrived in California via an early morning flight from NYC. Michael's myoclonic jumps were overwhelming and he was very sickly. He was dehydrated from the flight and not being able to drink. He had just been turned down by the Shriners as too sick for orthopedic work the day before.
Upon arrival he was put on an intravenous drip. We were driven to Mexico and Michael received an intravenous blend of 12 million hUCSCs following two bottles of mannitol. His myoclonic jumps subsided and he returned to health. Did the stem cells save him? I will never know, but they might have...

[Sasori]

Which clinic you went through? you're obviously happy with them to be returning a 5th time! Do you feel you are continuing to see 'spurts' of improvement along with each treatment, and how often are you going for treatments?

[michaelsdad00]

Tijuana, Mexico. The stem cells are good and Dr. Ramirez has provided useful orthopedic advice for Michael.

[Kaci's Mom]

Tijuana, Mexico. The stem cells are good and Dr. Ramirez has provided useful orthopedic advice for Michael.

I would definately have to agree with Michaelsdad00 on the quality of the cells coming from Dr. Ramirez. It's been almost 2 1/2 months since Kaci's treatment and she has yet to have any type of negative side effect. So far it's all been good. Infact, that was one of the main reasons I chose to take her there (I really have never read of anything negative- and belive me I've looked!). The other was that Dr. Ramirez has a pretty long track record for treating kids with cerebral palsy (as long as one can have- as far as umbilical cord stem cell treatments are concerned). It says a lot to me when a parent takes a child to have something like this done at the same place more than once. The fact that not only did Michaelsdad00 take his child there more than once (4 times and planning a 5th), many others have made repeat trips to Dr. Ramirez's clinic (as well) with their kids. This definately gives me the confidence that I put MY childs' health into the right hands. Not to forget the fact that there IS actual "documentation" of what is as close to a "clinical study" as I've ever seen for umbilical cord stem cells on children (which I believe Dr. Payne has posted a link to that somewhere on this forum). If I had to choose from information posted on a "fancy" looking website or information that a doctor presented in an actual "study"- I would for sure pick the facts over the "glamour".

[michaelsdad00]

Your reasoning "pretty much hits the nail on the head" as I see it as well. I couldn't agree more.

[alex]

I was impressed as well. Frank had a neuro-surgeon, an anesthesiologist, and of course Dr. Ramirez present; they did a catheter infusion in Frank's case. He is 2 1/2 weeks post treatment and we are seeing some small improvements, motor control, cognition. Should he need a booster, we'll be going back.

[barbara]

Good to hear this Alex!

[michaelsdad00]

I had heard of adults getting this. They snake a catheter from the groin area up to near the arteries of the brain and release the stem cells, I believe. We didn't want to risk it for a small child given the size of his arteries. Wonderful, Thanks for sharing this...

[Sasori]

Was mannitol used for either of your children's treatments? (to break down the blood brain barrier).

[Kaci's Mom]

Was mannitol used for either of your children's treatments? (to break down the blood brain barrier).

No mannitol was used for Kaci. They DID however draw some of her blood after inserting the IV ,"spin out" the platelets from the blood, and then put the platelets back in to her IV bag w/ saline. They said that would help open up the BBB. So there were no drugs involved. That would be a good question to ask Dr. L.

[michaelsdad00]

two bottles were used in a saline solution bag prior to stem cells.
David Snow

[Kaci's Mom]

I got my first email from the Steenblock Research Institute today regarding any changes in Kaci at 2 months post stem cell treatment. As I was replying it made me realize that although these changes that have occured with her seem to me as being somewhat subtle, she has definately made a lot of progress. I especially realize this when speaking with faculty members at her grade school who remember her just a few months ago in kindergarten. They too are seeing a noticeable change. I think sometimes it's harder to tell what is different when with a person all of the time. Anyway, I look forward to seeing what might happen in the months ahead- GO STEM CELLS GO!!!!!

[LaurenS11]

Go Stem Cells is right! I really would love to see what happens within the next few years, I know it will be good things!

[michaelsdad00]

Wonderful news. thanks for posting!

[Mysty119]

YAY, Kaci !!!!!!!!!!!!!!!!!!!!:D

[barbara]

This is great news. It may be helpful to jot down these changes. I know that it has helped me to look back at things I could and could not do. Subtle changes are the hardest and her teachers are undoubtedly very excited too about her progress.

[Azriel]

Hi Kaci's Mom

or to us New Zealander's 'mum'!

In one of your earlier replies to Dr Young's question re type and documentation given to Kaci you said:

The type of stem cells were umbilical cord (whether they were CD34+ or CD133+ or something else- to be honest, I really don't know). The cells were donated by the mothers of healthy babies born in different hospitals in the USA. And finally, I was told that the lab had problems with their computers so there has been a delay the certificates reaching SRI- but as soon as they get them, they'll send me a copy. (BELEIVE ME- I've been all over that question with them).


Did SRI actually provide this documentation?

We are currently waiting the MRI results for our son who at 17 months is either CP or stroke and so I've been collating all the 'right' questions to ask before we progress after the confirmed diagnosis.

Cheers

Merryn

[Kaci's Mom]

YES!!! I DID get a certificate of analysis from them shortly after I posted that.

[Tami03]

A few moms from all over the country have started talking,crying and laughing together. Sometimes we just need to VOICE it and get it out, and who better than someone who knows what your life is really like than another mom... or dad. Let me know if anyone would like more info it is completely informal we don't always talk about our kids but mostly, It is knowing that when we have a had a bad day there is someone there who gets it. For me these women have helped me keep standing and pushing and plodding and fighting this disease that plagues my baby. Open invitation :)

[barbara]

Tami - Kudos to you and the other parents who have started this support group.

[Jeannine]

Tami

Your support group sounds like our small group of folks with COPD who exchange emails on a regular basis.

Without Barb and my friends Jan, John and Larry I would feel very alone with my illness.

[Azriel]

Hi

I'm not sure now what we do and if stem cells will play a part. Oscar's MRI came back as normal and so did a range of other blood tests. So it rules out stroke but at the moment potentially not CP. Our appointment with our paediatrician is not until 22nd October so now a waiting game to find out more.

I'm wondering if any others had a long process to diagnosis for CP or did the MRI confirm it?

It is difficult with Oscar as he is certainly not as severely effected as most of the toddlers in his conductive education class.

So we sit in the 'undiagnosed developmental delay' category at the moment with both speech and motor skills effected.

merryn

[Azriel]

Forgot to add to my last post that I would be interested in your group Tami.

[Kaci's Mom]

Kaci's MRI came back normal too. She had her diagnosis of athetiod cerebral palsy by age 1. I don't know how things work in your Country, but here in the US we have places that are Child Development and Rehabilitation Centers. They run the child through a thorough evaluation that includes a Neurodevelopmental Physician, PT, OT, speech, sometimes audiology. I think this is a GREAT resource to have! Any way, I know how the whole "waiting" thing gets. GOOD LUCK!
Kristin

[caleb's mum]

Hi all, from New Zealand

Well I have been reading everyones success with Dr Ramirez and we have decided to have the treatment done for our two year old son who has CP and Epilepsy. We head off next Tuesday on the 2nd December, so I will keep you all up to date with his progress. One question for all who have had the treatment done by Dr Ramirez, how did he give the Stem Cells, our son is going to have them inserted via subQ injection, but have been reading some information regarding this and apparently IV is more successful. Any thoughts.

Also had a horrible email from Mary Schneider about going to Mexico she said that it's the most dangerous clinic of all to go to, that many children have become sick after their treatment, but I have not found any information supporting her claims.

Our wee boy has been on national tv and our local paper, also they are making a documentry about him having this treatment. as he will be the first child from New Zealand to have the treatment done, it has created lots of interest from people who also have CP, so I hope Caleb's story will make a difference to those people, and also give them hope that we can do something positive for their future.
If you wish to see our cute wee boy you can click on the link below. if not just go to www.tvnz.co.nz keyword Close up and click on Medical Journey of Hope

http://tvnz.co.nz/view/news_minisite_index_skin/news_close_up_group

Cheers
Caleb's mum

[Azriel]

Hi All

Caleb's mum's prompt made me realise I had not updated what we know so far now with Oscar. We have an official (for what it is worth) diagnosis of:

1. mild stroke
2. developmental delay
3. Autism Spectrum Disorder (ASD)

The ASD one threw me immensely as Oscar is very social and most of the symptoms from all my reading since that diagnosis are secondary. So unsatisfied that we could be diagnosed this way on a one hour session we have headed down the bio medicine path and we have just been to a specialist biomedicine paediatrician for her views. She also thinks the ASD are mostly secondary but we have started on a huge range of supplements and adjustments to diet. Starting with dairy free - oh what a mission for a yoghurt, cheese and milk boy! We have a nutritionist appointment for the next step of gluten free as well next week.

So what are we taking? All sorts! A specialist multi vitamin, B12 drops, Omega 3, a probiotic, a yeast killing product, epsom salt baths. I'm still trying to source some of the items but hopefully will have all by the end of the week.

In the interim though Oscar has gone up a gear in movement and vocalisation which is great. His creeping is now more utilised than his rolling so I am really, really hopeful we can get to some unassisted crawling by Christmas. For Oscar I have no doubt that conductive education is making good gains for him. Unfortunately though he is constantly picking up viral illnesses and so for our 14 weeks since we started conductive education he is now onto his fifth illness and away again I would say for the rest of the week. All the parents are very good at keeping kids home if sick but when they can't talk they can't always let you know something is coming on and I think it will take time for him to adjust to all the bugs about.

Stem cell is still high on our list of priorities for Oscar but we think that we will need to wait and give the biomedicine approach a chance for the next few months then start the funding mission to get there for Stem Cell Therapy.

We will watch with great interest Caleb's journey as a kiwi kid on the next stage of what I hope is a great change for him.

Cheers

Merryn

[michaelsdad00]

Dr. Ramirez in Tijuana, Mexico usually works in conjunction with SRI based in California, USA. http://www.ramirezdelrio.com/
He is an honorable and accomplished physician and the stem cells are good and safe. His clinic is not fancy but it is clean and staffed with professional nurses to support him. You should have no difficulties there. When we arrived there for Michael's fourth stem cell visit. Michael was treated intravenously with mannitol. However he was treated on other occasions sub-cutaneously. It is very likely that the stem cells produce Neuronal growth factors where they are injected which causes the stem cells naturally occuring in the child's brain to improve their effectiveness in brain repair. I just returned from a very interesting stem cell seminar this past Friday. Stem Cell & Regenerative Medicine Therapies for Treating Neurological Disorders in Children
Dennis A. Steindler, Ph.D.
The Evelyn F. and William L. McKnight Brain Institute
Joseph J. Bagnor/Shands Professor of Medical Research
Program in Stem Cell Biology and Regenerative Medicine
The University of Florida

Dr. Steindler indicated that indeed the likelyhood is greater that the production of growth factors by the hUCBSC's rather than them becoming neurons in the brain would cause improvements.

[Azriel]

Hi Michaels Dad

Did they have an electronic copy of the seminar notes? I'd be interested to read them in detail.

Cheres

merryn

[michaelsdad00]

I know they did a video of his presentation. Here is contact information from the World Congress on Disabilities email...

"If you have any questions or need additional information, please visit our website www.wcdexpo.com or call our offices at 201-722-9220."

Here is the write-up they have on Dr. Steindler:
Dr. Steindler received his doctorate in Anatomy and neurosciences from the University of California, San Francisco. After postdoctoral studies at the Max-Planck-Institute for Biophysical Chemistry in Germany, Dr. Steindler began his studies of brain development and injury as an Assistant Professor of Anatomy at Michigan State University. He is currently the Executive Director of the McKnight Brain Institute of the University of Florida, and the Joseph J. Bagnor/Shands Professor of Medical Research, a member of the Program in Adult Stem Cell Biology and Regenerative Medicine of the University of Florida College of Medicine, and an advisor to the California Institute of Regenerative Medicine (CIRM). He also serves on the scientific advisory board for the Michael J. Fox Foundation for Parkinson?s Research. Besides directing a large developmental neurobiology group, and teaching medical school neuroscience, Dr. Steindler has been studying the growth and transplantation of brain and stem cells for over 25 years. He is also responsible for reviewing manuscripts and grants for a variety of journals and funding agencies, including formerly chairing a brain repair and stem cell-related review panel at the National Institute of Neurological Diseases and Stroke in the National Institutes of Health, and he retains a position on the editorial boards of the following journals: The Journal of Neuroscience, GLIA, Experimental Neurology, and Brain Research. His recent papers in the international journals of medicine and science, The Lancet, and Proceedings of the National Academy of Sciences, set forth plans for the use of stem cells and regenerative medicine for a variety of neurological diseases, including Parkinson?s Disease and cancer. In addition to his academic duties, Dr. Steindler is the founder or co-founder of several regenerative medicine biotechnology companies, including: RegenMed, Inc., Neuropoetix, AngioPoetix, and OncoPoetix, involved in developing and commercializing cell and molecular therapies for neurological and blood-related disorders, and cancer.
Dave Snow

[Tami03]

Sub Q injections are at best temporary if that is all the treatment that is done. We went to Mexico at another clinic and only had the 2 sub q injections saw GREAT results for 5 weeks and then she regressed. We went to Lima Peru and had lumbar puncture which is the most evasive but the most effective. Something to consider!! Good Luck

[michaelsdad00]

That is something to consider. My wife and I had talked at some point about having the stem cells delivered into the cranial sac. The cerebro-spinal fluid contains the bulk of the neuronal stem cells. Dr. Steindler said it was similar to the Bone Marrow for manufacturing stem cells. Dr. Payne advised against it and we did not pursue it. But I know in China they introduce stem cells into the cerebro-spinal fluid. We chose not to due to the risks, but I hear whay you are saying. We will consider it as an option. I am glad to hear that it was most beneficial for your child!:D

[barbara]

I dislike hearing that anyone is trashing Drs.Steenblock and Ramirez as I find them to be hard working, honest, very bright, pioneering doctors. As far as running the most "dangerous clinic there is" she is sadly mistaken. Dr. Ramirez is one of the most respected doctors according to Dr. Jorge Astorga who is with the Mexican Ministry of Health. Also, if you knew or met Dr. Steenblock, it would be apparent that this in no way would apply to him either. I do hope that people take the time to research such things if they are at all concerned. It is so much better than strange articles one finds on the internet or gossip that is sent in an e-mail.


I also think that Dr. Feinerman is doing very good work. Tami's child, Ava, recently had treatment with him and Dr. Paino in Peru and this group also gets a thumbs up from me.

[barbara]

Thanks mysty119. I also wanted to let everyone know that we can customize shirts now. Just send an e-mail request to the seachangeforlife@gmail.com and tell us what you would like your t-shirt to say. I am getting one made for Christmas that says, "All I Want for Christmas is Legalized Stem Cell Therapy."
Same prices, same colors and sizes available for this. Thank you Michael for your support.

[caleb's mum]

Hi all,

Hope everyone had a wonderful and safe Christmas and I hope 2009 will bring good things for every one.

Well its been 4 weeks today since Caleb had his treatment.
We arrived after a 15 hr flight Caleb was great slept most of the way, airline lost my bag so was not off to a good start, but it arrived a couple of days later, anyway about his treatment.

We meet with Dr Steenblock the day after we arrived, he explained Caleb's CT scan to us which no one here as bothed to do. He said that Caleb didn't have much white matter and that is what is needed, he gave us the option of going with a Catheter inserted to his main artery in his grion, so we decided to go with this, basically he said that it would give us more bang for our buck, it made it a bit more stressfull as it would mean he had to have a G.A, but every one at the clinic was great, they were very professional and Dr Ramirez explained every step that was going to happen during the operation.

Caleb did so well he was such a brave little guy, he came out of the operation great. Post Op he has been very tired for the last couple of weeks, Dr Steenblock said that that's great as it means the stem cells are working, (thank god) haven't notice any changes yet, but as Caleb didn't have much white matter it may take a little longer before we do. We plan on heading back in 6 months for another treatment.

Will keep you all informed of his progress.

[Mysty119]

This sounds so good. I believe Caleb will benefit from this treatment. Dr. Steenblock and his staff are absolutely great. My best to Caleb.

[barbara]

Thank you so much for the update. What a sweet little guy and a brave one also. I am so glad to hear that things went well for you. Keep us posted. I know you will.

[michaelsdad00]

I had forgotten about the option of having a cathederization done where they snake a tube up just under the brain before releasing the stem cells. Is this the procedure they used? My son Michael was too little three years ago but he has grown so much since then, now that he will be 9 years old in March, who knows...

How old and what size is your son, Caleb if you don't mind saying?

Thanks for posting.
Sincerely, David Snow

[caleb's mum]

Hi, thanks for your kind words Bea, and Barbara, and the answer to Michaelsdad00 questions is, yes that is the procdure that Caleb had, at the time Caleb was 2years and 3ths, and his weight was about 10.5kgs, Dr Ramirez said, that Caleb was the smallest person they had done to date, so in a way Caleb was a trail for them, but he came through it so well, so hopefully younger children can have this done sooner rather than waiting for them to get bigger.

[michaelsdad00]

Thank you for your reply. I hope those stem cells find a wonderful home in your son, Caleb. Best of fortune to him. Dave Snow

Hi, thanks for your kind words Bea, and Barbara, and the answer to Michaelsdad00 questions is, yes that is the procdure that Caleb had, at the time Caleb was 2years and 3ths, and his weight was about 10.5kgs, Dr Ramirez said, that Caleb was the smallest person they had done to date, so in a way Caleb was a trail for them, but he came through it so well, so hopefully younger children can have this done sooner rather than waiting for them to get bigger.

[Vaibhav]

Hi Tami,

Can you tell us a bit more about the milestones as of date since the treatment at Peru?

Thanks

Vaibhav

[caleb's mum]

Hi all

Well it is now 4 months since Caleb had his treatment, and he is such a different wee boy, his seizures have reduced to around 5 - 7 a day, he can hold his head up better, and is more vocal and active, he can also clap his hands now, which is so cute. I feel we are slowly getting our wee boy back, when I look in to his eyes I can see some one behind them now, where as before he was always so vacant looking. This is the website for TV3 they followed us over and made a programme about Caleb's Journey hope you enjoy his story.
http://www.tv3.co.nz/60-Minutes---In-Search-of-a-Miracle/tabid/742/articleID/60108/cat/612/Default.aspx

Two other families from NZ have also received treatment by Dr Steenblock and another one is leaving soon to head over.

Will keep you posted.

Take care

Shirley & Caleb

[Vaibhav]

Great! am so glad for him. do check out the Halifax Injector on google. I am also trying to find out more about it. with this machine stem cells can be directly injected inside the brain ino the exact area of damage. It could be phenomenal for caleb and our son shaurya!

God Bless

Vaibhav

[michaelsdad00]

Shirley,
Wonderful video! Brought tears to my eyes and chills up my spine! We have 5 days to go before we arrive in San Diego/Tijuana.
Dave Snow

[Mysty119]

I have read all of your posts before about your little boy, Caleb. When I sat here and watched that video, I was crying and crying. This story is so wonderful---and Caleb seems such a sweet, sweet angel. Dr. Steenblock is a wonderful, caring man and he pulls no punches. This is such a triumphant story and one that seems to be on it's way to a happy ending!

[barbara]

Shirley - Thanks so much for the update. When Dr. Steenblock said stem cells are the Holy Grail, this is a perfect example. Please continue to give us updates on Caleb.

[Kaci's Mom]

Shirley,
I am so glad to here that things are going so well with Caleb! What an awesome little boy!! Your documentary has reminded me again why I chose to trust Drs Steenblock and Ramirez. We'll be back there in June too. Best of luck to Caleb and your family!!
Krisitn

[barbara]

Dave - Good luck on your trip. We will be thinking of you and Michael especially.

[caleb's mum]

thank every one so much for your kind words about Caleb.

Dave good luck for your next trip, I know it will go well, how many treatments has Michael had and have they all been the same?. Please let us know how Michael gets on. I hope to go again in June/July, as long as the fundraisng goes well.

[michaelsdad00]

Michael's first two were subcutaneous injections. The third was subcutaneous but many more stemcells were injected. The 4 was intravenous with two bottles of mannitol. This is the first time with a catheter and we are hopeful that bypassing the heart and lungs with the stem cell infusion will have a more pronounced impact/benefit.
Dave

[Kaci's Mom]

Hello,
I just wanted to "check back in" and let you all know that Kaci has returned from her stem cell treatment that she had on Monday in Mexico. She was a VERY brave little girl and came thru the whole ordeal nicely. Now I guess we just wait, wait, wait...
I'll keep you posted.

Kristin

[barbara]

Very nice to have you all back. I hope she also enjoyed Disneyland.

[michaelsdad00]

Kristin,
Thanks for the update. Our best to Kaci!
Dave

[Henry Young]

Dear Kaci's Mom,

How did the clinic do the technique? Was it an IV injection with mannitol, was it placement underneath her skin, was it an intrathecal (reserve spinal tap), or what? How did they get the umbilical cord stem cells into her body?

Dr. Young

[Kaci's Mom]

They used a catheter from the femoral artery to the carotid artery.

[alex]

How many stem cells did they inject?

[Kaci's Mom]

There were 4 vials (6 million cells). How's Frank doing?
Kristin

[alex]

Frank is doing well. He has made some improvements with cognition. We are still battling spasticity.

If everything goes well he'll be going for stem cell treatment in the Fall.

Hope Kaci is going to make more gains.

alex

[sunil]

I am new to this site and did go thru some of the messages on this board and also did look at some stem cell articles in google. My son has mild Cerebral palsy and I am looking for stem cell transplant with a hope that it will cure CP. Please suggest what is the best course of action. Following are his details

Age : 7 1/2 Years (Entering second grade this August)
Birth Age: 28 weeks gestation (Premature)
Birth Weight : 1060 GRAMS
Diagnosis: Mild Cerebral Palsy (Spastic Diplegia affecting lower limbs)
Umbilical Cord : Not Stored at birth
Complications during birth : IVH (Intra Ventricular Hemmorage) and was diagnosed as mild PVL (Periventricular Leukomalacia) leading to diagnosis of Mild CP (Brain MRI was done at the age of 2 years)
Current Weight : 20 KG
Current Height : 4 Feet
Other Current Medical Issues : No Major Issues....had some normal viral fevers but NO SEIZURES either during birth or afterwards
Academics : On par with his peers in Math and Reading....very social....good memory
Motor Skills Issues : hand eye coordination issues, poor balance while walking.....walking on toe...crouched/scissored walking at times...

I really appreciate comments from all so that it will help me to purse right treatment.

[barbara]

There are several parents of children with CP who are members of this forum. Hopefully, they will see your post. Not all of them have used the same doctor either so hopefully you will get a variety of answers and resources to help you.

[Sasori]

We went with Ramirez/Steenblock Research Institute for Umbilical cord stem cell therapy and are very happy with the results. We will be going back again.
However, there is always an element of risk with a surgical procedure. It does invovlve a general anaesthetic, and you are (in almost all circumstances) relying on a third world country to do the procedure. Not to be taken lightly, especially if your child is not severely disabled. Our daughter is unlikely to live past her young childhood, so quality of life is very important. Weigh up the risks, talk to lots of people. This is amazing stuff, but it is still very new, and you need to be very careful who you go with.
Have you considered: HBOT, Therasuit and Lokomat? Also surgery to release groin muscles and/or hamstring? Not saying 'don't do stem cell therapy' but am saying 'have you considered all your options'. Good luck with the research!