Cerebral palsy and other brain injuries

Kaci's Mom

New member
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

New member
Our daughter has Cerebral Palsy too

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

New member
We're back from Mexico!!!

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

New member
Thanks for the update!

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

New member
I wanted to correct something I wrote yesterday

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

New member
Cool that's great to know

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

Guest
Curiosity

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
 

barbara

Pioneer Founding member
Welcome back

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.
 
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Kaci's Mom

New member
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).
 
H

Henry Young

Guest
Kaci's Treatment

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

New member
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
 
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Henry Young

Guest
Stem Cell Gender Differences

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

Pioneer Founding member
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

New member
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.
 
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Henry Young

Guest
Differences of Opinion

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
 
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