I'd like to introduce myself.

Kaci's Mom

New member
Hi, my name is Kristin- I'm Kaci's Mom. I am SO EXCITED to find so many people in one place who've experienced SCT's!!!

I am a Mother and a Caregiver of a (almost) 6 year old little girl with cerebral palsy. She was a victim of a "medical mistake" at birth. Since then I have spent most of my time and energy working toward her recovery. I believe my time has been WELL SPENT!!! Since her diagnosis at 3 months old she has gone far beyond what ANYONE's expectations could have ever imagined! Of course, I have to give her much of the credit- she is amazingly determined not to be disabled! This is what gives me the incentive and drive to go beyond what's "traditional" and to "step outside of the box"- so to say!

So, I guess it was about a couple of months ago- while searching and researching what kind of therapies I could involve Kaci in during her 3 month summer break from school- I thought, "Why not Stem Cells"? Instead of forcing her through many weeks of Intensive Physical Therapies that ONLY show minnimal improvements in the end, why not try something that could actually "repair" the damage to her brain????? And then I discovered Umbilical Cord Stem Cells. After countless hours of researching the internet and many phone calls to experts on this subject, I am completely convinced we're heading in the right direction toward my childs' dream- to just be a "typically funtioning" kid. I realize our expectations might be somewhat unrealistic... but really, who knows????

We are scheduled to visit Dr. Ramirez's clinic in Tiajuana June 30th. At this point, my biggest fear of this whole event is the fact that it's in Tiajuana Mexico (YIKES!!!)!!! But considering where we live, it's basicly just a "hop, skip, and a jump" away. I've considered other clinics, but this one has sold me. However, my opinion COULD change after our visit. I've spoke to others who've been there- they say NOT to expect it to be much. But hey, it's Mexico, right? So I'm not. I just want the stem cells!!!!

So any way, that's the story so far. Wish us luck!!!

Kristin
 

Jeannine

Pioneer Founding member
Good luck to you and your daughter. I hope this trip is helpful to your daughter's condition.

Please fill us in about the experience when you return and keep us posted on her progress. Where would one locate information about how to contact Dr Ramirez?
 

Kaci's Mom

New member
Information on Dr. Fernando Ramirez

Hi-
Dr. Ramirez has a website. He is a specialist in Spinal Cord Regeneration and has been using Stem Cells for years to treat people with paralysis. He operates from the "International Spinal Cord Regeneration Center" (google THAT if you want to see that website as well) 2 blocks from the boarder in Tiajuana Mexico.
I have been doing my communication for this through the Steenblock Research Institute in Southern California. He and Dr. Ramirez did a study with children in 2002 with cerebral palsy using Umbilical Cord Stem Cells that can be found on Dr. Ramirez's website. They are however doing things a bit differently since then- using MANY MORE Stem Cells and injecting them through IV instead of subcutaineously in small children.

Kristin (Kaci's Mom)

Moderator edited due to link.
 
Last edited by a moderator:

barbara

Pioneer Founding member
I have tried several times to contact Dr. Ramirez and have been unsuccessful. I think that he is preferring those that want treatment from him work through Dr. Steenblock. We list both Dr. Ramirez and Dr. Steenblock in our book, "Stem Cell Pioneers" as resources to check. I will be anxious to hear how it goes for you. It is indeed unfortunate that you have to go across the border for treatment but that of course is the subject of other threads on this forum. I believe that stem cell therapy is going to be the best thing you can do for your child. There are huge strides being made for those with cerebral palsy. Please keep us updated.
 

Tami03

New member
To Kaci's mom

Hi I just took my 18 month old daughter on May 22 of 2008 she also has CP as well as some other problems but she is already rolling over, chewing and using her weak side (right side) to push back over, she is doing amazing. And as of right now she is the YOUNGEST patient for Stemcell Biotherapy ever to have treatment. Hope to change that soon. :) Hope you have a wonderful and awesome trip.
 

Mysty119

New member
Tami

Tami, that is sooo great. You must feel absolutely wonderful to see your child doing these things!!! I wish you both more progress and great health!!!
 

Aussie Mum

New member
Thinking of you

Hi,

I too am a mother of a child with CP. My little boy is 3 1/2 years old and bright as a button. He's got quad CP, doesn't walk, talk, roll or sit at this stage but tries so hard at it all.

I've been put on to Stem Cells, read Anthony Payne's book, read all about Adam Susser and the boy on the Today show and really want to try it for Johann.

I see you're headed down to Tiajuana at the end of the month. I really look forward to hearing how you and Kaci go with the trip. Please write when things settle down after your return.

Cheers,
Adrienne
 

Tami03

New member
To Aussie mom and to any parent of a special needs child

We already went and Ava my daughter is doing better than ever expected if you will send me a private email I will tell you all and can give you my # so we can chat easier. I have 3 children 7, 3 and 18 months so chating on the internet is very difficult. Ava can roll over now and getting better at every day, she just started trying to keep her arms straight which is the first step to getting her to crawl her legs want to but her arms are the problem and I just today saw her trying to get them to work, hopefully by the end of June she will start to take those steps to crawling. I am loyal to Stemcell Biotherapy so to give you a heads up this company was the ONLY one in which I could ask any and all questions to the doctors and not feel like an idiot and some of them were repeating the same questions. Stemcell Biotherapy was the only clinic in which I would ever take my child to and I have spoken to several of them. I did extensive research and discovered that this clinic was the only one that truly had my child's best interest at heart. I know of several people with a variety of conditions and parents of children with variety of condtions who feel the same. We have a small support group and whould love for you to join if you ever feel the need to do so. Please let me know. Tami
 
Introduction - David Snow

Recently introduced to this site by Dr. Payne and appreciate the way it is set-up. My son is 8 1/2 and has Severe neuro-encephalopathy with secondary cerebral palsy due to a forcepts induced brain injury during birth (fractured skull). We have taken him to Dr. Ramirez through SRI 4 times. His last visit was in March of 2006 and we are planning for another visit next March, in time for birthday and after flu season. I have enjoyed reading the postings. We live in South Carolina.
 

barbara

Pioneer Founding member
Michael - Sorry I didn't see this post before I asked his before and after condition. I am glad to have you join us. We are getting a lot of new members with children that have CP and your input will be good to have. I am assuming that each treatment brings another sign of improvement and therefore encourages you to continue with therapy for him. What did you see after the first treatment if I may ask as compared to subsequent treatments?
 
First treatment

We were somewhat a part of the original stem cell cerebral palsy study conducted by Drs. Payne and Steenblock in the fall/winter of 2003. Michael didn't really show remarkable results except that he did start to see after 6 months.
 

barbara

Pioneer Founding member
Michael - Do you think that being able to see was a result of the stem cell therapy or is there any way to actually know this?
 
Coincidence or cause and effect?

There is no way to know for sure. We have been pushing on all fronts so there is no way to know for sure whether the stem cell transplant brought Michael from Cortical Blindness to only having Cortical vision impairment. HBOT, supplements, hUCSCT, natural development - There is no way to know for sure except that the last major therapy he had before the optometrist noticed that he could see was an injection of stem cells from human umbilical cord blood so it gets the credit.
Dave
 

Kaci's Mom

New member
There is no way to know for sure. We have been pushing on all fronts so there is no way to know for sure whether the stem cell transplant brought Michael from Cortical Blindness to only having Cortical vision impairment. HBOT, supplements, hUCSCT, natural development - There is no way to know for sure except that the last major therapy he had before the optometrist noticed that he could see was an injection of stem cells from human umbilical cord blood so it gets the credit.
Dave
Hey Dave,
Did Michael do his HBOT sometime AFTER the stem cells? This is a question I submitted to Dr. Steenblock for the "Ask the Doctor" forum- Whether he recommends HBOT anytime AFTER having a stem cell treatment? Kaci's been through 200 hours in the hyperbaric chamber (myself with her). I'd like to not have to go back in there, but if it helps, I would.
 

Kaci's Mom

New member
Hey Dave,
Did Michael do his HBOT sometime AFTER the stem cells? This is a question I submitted to Dr. Steenblock for the "Ask the Doctor" forum- Whether he recommends HBOT anytime AFTER having a stem cell treatment? Kaci's been through 200 hours in the hyperbaric chamber (myself with her). I'd like to not have to go back in there, but if it helps, I would.
Back again- I guess the answer to my question was right there in your post- my husband always says I should read things more closely before I comment. This would be one of those times. Sorry.
 

alex

New member
Dave,

What supplements are you giving Michael?

We have been giving Frank fish oil, pro-biotics, Ginseng, and Eniva (vitamin/mineral supplement). We had also given him Citicoline, but Dr. Steenblock wanted us to hold off on that for a while.

He also recommended green and brown seaweeds (good for stem cell growth), and I will start those tomorrow.

I am interested if there is anything that you thought has helped Michael or would be beneficial.

alex
 
Hyperbaric Therapy and supplements

We have always allowed at least a month or two after SCT before doing hyperbaric therapy. I read that stem cells prefer a low oxygen environment.
Michael takes Ashitaba capsules. They seem like a nice dietary addition. Tryptophan capsules assist him with his jumpiness and help him sleep. I read that tryptophan is a good addition for a pro stem cell diet as well. I used to have him on a number of different brain activity enhancing supplements but gradually I have fallen away from using them much. The fish oil, DHA, is great except when it comes back up, spit up/reflux. Whew, what a smell! So that also is used intermittently. They have DHA in so many foods now we go with that and walnuts.
Question: Where do you get the seaweed, in what form?
 

alex

New member
Dave,

I ordered it through the internet.

http://www.iherb.com/ProductDetails.aspx?c=1&pid=7139&at=0

In case the link doesn't work; it is called "Best Fucoidan" (brown seaweed) by Doctor's Best. iherb, vitaminshoppe, or any of the online vitamin stores should have it. There is also one by Garden of Life, but their product comes in softgels (hard to use with a feeding tube).

Thanks for the other suggestions.

alex
 
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