Warning from a member

barbara

Pioneer Founding member
Tami03 posted this today in the General Discussion forum. I think her lesson to us is so valuable that I also wanted to post it where those reading about CP, stroke, etc. would see it. This is a small child which to me makes it all the worse. Thanks Tami for coming forward with this information.


Today, 11:53 AM
Tami03 Tami03
Junior Member

Join Date: Jun 2008
Location: ky
Posts: 10
I would like to apologize

To Barbara, Jeanine and everyone one else,
I would like to apologize for my comments regarding Semcell Biotherapy, I was wrong. Casey Nabavi has changed protocol for my daughter, and she has regressed. Casey only gave my daughter 2 subcutanous injections without the IV. Warning to all you can only have the 2 subcutanous injections combined with the IV for the stemcells to work, without the IV stemcells won't breach the blood brain barrier. Casey states that it doesn't matter how the stemcells are injected but that isn't true. Common sense tells me that. Dr. F and Casey are in a legal dispute according to stemcell biotherapy and that is all that I am told. Stemcell Biotherapy will not connect me to speak with Dr. F. I have demanded a full refund as well as my daughter's medical records from Stemcell Biotherapy.
Again I would like to apologize to everyone for my comments and ask for your forgivenenss.
 
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H

Henry Young

Guest
Crossing Blood Brain Brrier

An alternative method to cross the blood-brain barrier is to perform an intrathecal injection, i.e., simimlar to a lumbar puncture in which the physician would remove a small amount of cerebral spinal fluid for analysis. In this case it would be the other way around. The stem cells would be injected into the area of the cerebral spinal fluid and travel up to the brain, through the subarachnoid spaces and then migrate into the damaged areas of the brain to affect repair. Intrathecal injections/lumbar punctures can be performed in children as young as newborns through geriatric-aged individuals. Take care, Dr. Young
 
H

Henry Young

Guest
Crossing Blood-Brain Barrier-II

Dear Tami03, Where were the two sub-Q injections given (what part of the body?) and where was the IV inserted (what part of the body?). Lastly, what type of stem cells were injected (what part of the body did they come from and how were they processed?). Dr. Young
 

Sasori

New member
Help?

So I'm understanding that Tami03's daughter was only given SubQ injections, no IV, and that her condition has worsened since her original post?

Dr Payne has answered questions around this topic recently. I am looking into another clinic (not SCB) who also do subQ injections in younger children, and Dr Payne has suggested that he found in a study of 8 children that subQ injections did have an effect (although he does say that he believes IV is far superior). Communications from the people we are dealing with indicate that they do not use mannitol with very young children, especially with neurological conditions as their BBBs are 'leaky'.

So are we saying here that Tami03 has found that stem cells won't get through the BBB without an IV, and if so, what is in the IV?

Also, to what point has Tami03's daughter regressed? To her pre-treatment level, or worse?

And to Tami03, I am very sorry that things have not panned out well. I do hope that one of us CP parents will find something that does!
 

barbara

Pioneer Founding member
It sounds like the same dilemma that many of us are going through with other diseases. What type of cells, what type of delivery, what culture medium, etc. is best. Some of the best minds are at work on these problems. It gives me confidence that some day there will be a reversal of many of the diseases that have previously been so difficult to deal with.
 

Kaci's Mom

New member
I would like if a "Medical Doctor" would also read these posts and offer an opinion as well- because we ARE dealing with the medical aspect of our children. I think it would be very benneficial to us as parents to see "both sides of the coin" since recently many issues are popping up that I think require a "second opinon".
 

barbara

Pioneer Founding member
We do have medical doctors that participate in our Ask the Doctor forums. I know that many read the forum also, but I don't believe we are going to see a medical doctor participating on a regular basis on the forum when it comes to daily posts. I believe that Kirshner who will host the Ask the Nurse has excellent training and experience and perhaps some of these questions could be given to her for the August forum. She is not about to give medical advice nor are any other doctors who post, however, I think that we can gain some valuable information by asking these questions from our monthly hosts.

Please send any questions for the Ask the Nurse forum to my e-mail. Anyone who has asked a previous questions from a different host is also welcome to resubmit their question to get another opinion at any time.
 

Tami03

New member
Ava had the two Sub Q injections at the base of the neck, and no she didn't get worse, she just regressed to the (pre-injections) conditions. I can't divulge anymore without breaking my word that I wouldn't say anything negative about SCB. The good news is she is getting treatment in Peru shortly.
 

barbara

Pioneer Founding member
I am happy for you Tami. SCB as you know is still red flagged on this forum and for good reason. I hope the trip you are taking to Peru will be with the quality of care that you unfortunately did not have previously. Best of luck to you and your precious Ava.
 
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