Cerebral palsy and other brain injuries

H

Henry Young

Guest
Differences of opinion - Part II

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

New member
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
 
H

Henry Young

Guest
Cerebral Palsy

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

New member
An interesting point

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?
 
H

Henry Young

Guest
Gender Differences

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

New member
It's been 6 weeks post stem cells for Kaci!!!!

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

Pioneer Founding member
Happy Birthday to Kaci

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

New member
Kaci's mom

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

Pioneer Founding member
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.
 

Kaci's Mom

New member
Thanks you guys!

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

New member
Kaci's Mom

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

New member
Fabulous news

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

New member
Kaci got a 2nd Place ribbon!

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

Pioneer Founding member
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.
 

Mysty119

New member
Kaci's mom

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

New member
Yay for Kaci!

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
 
Love the T-Shirt. We'll have to get a few...

:) 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]
 
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