Cerebral palsy and other brain injuries

4th visit

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

New member
Yes, please do advise...

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?
 
Dr. Fernando Ramirez Del Rio

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

Kaci's Mom

New member
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".
 
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alex

New member
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.
 
Catheter infusion!

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

New member
Kaci's Mom/Michaels Dad

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

Kaci's Mom

New member
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.
 

Kaci's Mom

New member
Got an email today from SRI

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!!!!!
 
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LaurenS11

New member
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!
 

barbara

Pioneer Founding member
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

New member
Did you get any documentation on the cells Kaci was given

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
 

Tami03

New member
regarding a support group for parents with special needs.

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 :)
 
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