11 replies to this topic

[StotheG]

I am going to start a cerebrolysin on my autistic son. My son is 5 years old and severely autistic--non-verbal, very poor concentration, can only follow a single request with a great deal of prompting and reinforcement. I've tried everything under the sun to help him improve. The only thing that has actually significantly helped him as been receiving autologous stem cells. I want to continue, but the treatments and stem cell procedures have left me in over 60,000 dollars of credit card debt--and I don't even make 40,000 a year. Anyway....

 

I've been reading about cerebrolysin, and given the positive effects of the stem cell treatments, it seems like the best intervention to try.  

 

Before I begin administering cerebrolysin, I have a few things that I'd love to get the veterans of this boards thoughts on. I'd really appreciate your thoughts on this, but know it is just an opinion and not a recommendation. I take full responsibility as his father, I just want to be as informed as possible.  

 

I am planning on administering intramuscular injections 3 times a week. He is 18 kg(41 lbs), so a pediatric dose should probably generally not exceed 4 ml at most. Given the fact that this injection would be intramuscular, though, it seems like a very large dose to give him at any one time. 

 

Here is lies one of my biggest problems. I ordered a small amount of cerebrolysin for a trial run, specifically 1 box of 5 X 10ml ampules of cerebrolysin. I don't plan on administering 10 ml doses at any one time. Once and ampule is open must the entire content be used immediately or can you keep cerebrolysin in a syringe for a day or more? What's the safest way to go about this?

 

Do you think a filter is really necessary, as I've read online that a filter is never used in hospital settings 

 

I really do believe that my son's autism is the result of disrupted brain development in utero--this mother was under a great deal of stress (work and also the hospitalization and death of her father), there was construction in her place of work, she had a number of very high fevers. This is why stem cells have basically been the only thing that has significantly helped. 

 

Are there any other supplements that you feel would really act synergistically with cerebrolysin to help regenerate the brain? What might be the best combination? I mean, something that helps to really regenerate the brain,  as opposed to merely improve concentration/focus, etc. 

 

Any other ideas on how to best accomplish this intervention are much appreciated. 

 

Lastly, to  all those that might be considered with the safety, I completely understand. I have been reading as much as I can on the topic, learning the risks of air in syringes, hygiene, and recognizing the dangers of hematomas, etc. I have also administered B12 shots to my son for over 2 years, but with barely any effect.  We also have a great pediatrician that we work with. I certainly would not involve her directly in this, but I would not hesitate to call her or go to the hospital should the need present itself. 

 

Thank you in advance to all those who share their thoughts. I really appreciate it. This intervention has sustained my hopes for my son and gives me motivation to hope for a good future for him. Thank you.  

[Mind_Paralysis]

There's no proof that stem cells would in any way help with Autism - it's not a neurodegenerative disease - it's quite the opposite! All the data suggests that Autistic people have too active of a synaptic growth, the brain doesn't prune away all of the junk connections in the brain, leading to an incorrect construction with a lot of dead ends.

 

It's genetic - you giving him stem cells mean nothing - and Cerebrolysin increases neurogenesis... honestly, it won't have any effect, especially not since he's only 5 years old, and his neurogenic processes are probably all super-charged anyway - and where are the STUDIES to back your theory up??

 

Honestly, I think you should stop this right now - you don't know what you're doing, and you're putting your sons life on the line.

 

 

Here, I'm giving you a few links to have a look at - they all say the same thing - too much neurogenesis, in the WRONG way.

 

I suggest you have a look at this research, as well as the data on abnormalities in the GABA (this appears to be far more important than we previously assumed) opioid system, and the glutamatergic one.

 

Children with Autism Have Extra Synapses in Brain

http://newsroom.cumc...synapses-brain/

 

Origin of synaptic pruning process linked to learning, autism and schizophrenia identified

https://www.scienced...60502161118.htm

[StotheG]

Thanks for your thoughts and response Stinkorninjor,

 

I am familiar with the argument that autism is the result of too high density of synapses and also is produced by a lack of synaptic pruning. I am also recognize that many forms of autism have a genetic basis. In terms of the genetics, I had my son undergo a genetic screening at a major research hospital that found no known genetic markers that are correlated with autism. 

 

The problem with autism is that its simply a catch-all phrase used to label children that are exhibiting deficiencies in basic social and language development. That's about the only real diagnostic value. Beyond that, there are many different ways--genetic and environmental--by which autism can emerge. 

 

In regard to the theory of autism being the result of excessive synapses or a lack of pruning, I find those arguments are based on a very faulty logic. First, as science must be inherently conservative, these findings were really more statements about specific features of autistic brains that were discovered than definitive conclusions about why autism develops. Secondly, I find that the studies confuse the symptoms with causes. 

 

Autism can be diagnosed as early as a year, but this happens far earlier than the state of the emergence of synaptic pruning. Autistic brains have more logical connections but far fewer connections among brain regions, because they have never properly developed a higher level neurological coherence--that also acts as the mechanism by which the brain can begin to actively prune, reorganize, and strengthen certain synaptic connections. 

 

Here is a study that highlights the lack of global connections, specifically in the default mode network: 

Abnormal functional connectivity of default mode sub-networks in autism spectrum disorder patients - ScienceDirect

 

 

  Abnormal functional connectivity of default mode sub-networks in autism ...

 

 

 

 

Mind you, this was done with high-functioning autism, not with those that are more severely effected--to which the lack of inter-regional connectivity would no doubt be even more pronounced. 

 

Having been emerged in the 'autism research' for a number of years, I can unfortunately state that most of the papers are not worth much, or they publish facts that highlight the 'forest' but at the expense of the 'trees.' 

 

In regard to stem cells, they are the only intervention that has helped my son. His improvement after receiving them has been objectively tested by his speed, occupational, physical, and behavioral therapist. So, beyond my own observation, there are third parties that have seen the progress as a result of the stem cell intervention. If I had seen no progress, I definitely would not have invested as money into it to go a second time, especially as I'm the financial knifes edge. 

 

My only goal in this is giving my son the greatest chance of living an independent life on his terms. I love to be able to have him express his wants and needs, become potty trained, and as he gets older be able to get a job of some kind. I don't want to impose my will on him, deny him his individuality, or ignore his unique and autonomous personhood, but to help him be able to develop his own will, identity, and path. But to do that, I really need to help him overcome his significant cognitive deficiencies. 

 

Thanks for taking the time to reply. 

 

[tunt01]

IMO.  Cerebrolysin is a dangerous, risky proposition and should not be engaged unless the alternative is basically death or a permanent vegetative state.  The immunogenecity issues surrounding putting a dirty cocktail of 600+ foreign, non-human proteins into the body is very questionable and risky.  It's why it would never pass an FDA approval process.  It's fraught with all kinds of risks.

 

You can see past concerns about the immune risks of such drug in threads.

 

Developmental problems are very hard to overcome, if not, totally impossible.  The first 2 years of life are critical to the long-term development of a person.  You can't unwind the clock and go backwards really.  This is why years ago and in societies with higher levels of poverty, people would have many more kids, because one or two won't develop right and biologically humans are playing the odds of the best scenario to pass their genes on to the next generation.

Edited by prophets, 23 November 2017 - 01:48 PM.

[StotheG]

I understand that there are many theoretical concerns regarding the immunological effects, but are those based on any hard data? Beyond a contaminated batch, which I hopefully won't encounter, cerebrolysin seems to have decades of beneficial use in Europe. It has been around since the 1950s, at least. 

 

One way to minimizing the dangers of a batch batch is that I would inject a portion of the ampule into me and monitor my own bodily state. HOWEVER, I don't know if I could leave a sample in a syringe for over a day before injecting it or if that's the riskiest factor for contamination. 

 

As to doing nothing about undoing damage done....I get that, but this is LongeCity after all? If not us, who? If not now, when!

[tunt01]

It's not an issue of contamination or 'theoretical concerns'.  There is a reason why when you get a blood transfusion, it is matched to your blood type, such that an immune response isn't elicited and kills you.  If you inject a person with a porcine version of BDNF, stimulate an antibody response to the foreign protein that cross reacts with the actual human BDNF protein, then you may have basically sabotaged the long-term health of the organism for short-term stimulative gains.

 

It's hard to say exactly what happens to the human body when cerebrolysin is injected, because there is so little data and obviously the pharmaceutical manufacturer isn't going to help anyone but publicly putting the data out there showing all these risks.  But there are basic issues of immune-response to a foreign protein in the human body that will exist whether or not you are injecting cerebrolysin or horse blood or some kind of whale protein.  The body sees it as foreign and begins stimulating a permanent immune response.  How that long-term immune response reacts with healthy, human proteins is anyone's guess.  The manufacturer probably has scientific staff that understands these risks, but won't exactly go out of their way to tell people, because it's not in their economic interest.

 

Lots of things have been around since the 1950's.  Smoking cigarettes has been around much longer and for a long period of time was thought to be very healthy.  Maybe try that too!

[StotheG]

That's a far concern and I understand your point. In a related manner, I know that's why HGH injections are given every three days for children--to minimize the immune response. I don't plan on doing it on a daily basis, certainly. I really value the concern you are showing and will keep it in mind. I feel at least a brief trial is worth doing, but am not going to overdue it--either in the schedule or the dose. Thanks for your thoughts on the matter, I really appreciate it. 

[tunt01]

 I feel at least a brief trial is worth doing, but am not going to overdue it--either in the schedule or the dose.

 

 

I really don't think you know what you are doing, even though you may have good intentions and real concerns over your child's welfare.  The body builds a multi-year immune response to a foreign protein.  A person doesn't get chicken pox, develop an immune response and then subsequently get chicken pox the next year again.  It's because there is a permanent B-cell memory.  It's not like 'a little cerebrolysin' is worth trying and that's dramatically different from 'a lot'.  While true, that two or three injections will probably be more immuno simulative than a single injection, once you cross that chasm into a couple of injections you have trained the body for a multi-year immune response that could last a decade plus.  Who knows.

 

You may be desperate to find an answer, but don't be fooled into thinking there is some magic elixir that can 'make things better'.  The grass always looks greener, until you get there and 8 years later you are looking at a situation that you probably made worse, not better.

[StotheG]

I get your point, but for the sake of the argument, should not the countless individuals who have taken large and regular doses of cerebrolysin have experienced a similar reaction? Wouldn't the hundreds of thousands of people on bioidentical hormones (often extracted from horse piss, etc) report similar outcomes? If someone takes steroids, no doubt it does effect endogenous testosterone production, but why wouldn't this lead to an immuno-response against testosterone production outright? I've not heard of this occuring. Even with adverse reactions to cerebrolysin--and I want to keep those in mind--the outright antibody attack on endogenous bdnf would produce dramatic consequences in basic cognitive function, I would imagine. There are many threats on this site with people using cerebrolysin daily for months to over a year. 

 

I ask this in good faith, I'm not trying to simply dismiss what you are saying or to just argue one side, as I completely understand how this outcome might develop, but the outcomes does not seem to be something that occurs with any real frequency that I've read about--from cerebrolysin or other similar bioidentical peptites/hormones, etc. 

 

If you have any threads or reports on the topic close at hand I'd be happy to read them. Happy Thanksgiving. And again, muchas gracias. 

 

 

[tunt01]

You are confusing endogenous / bioidentical with foreign.  It's not bioidentical if it comes from horse urine.  The whole point of using bioidentical hormones is to avoid immune response risks.  There are some individuals who have experienced immune responses to cerebrolysin, they have posted on this forum and you can see the rather significant response they experienced using it intra-nasally.  Granted the administration process is different from IM injection, a lot of the principles remain the same.

 

If you are looking for a bioidentical hormone process, search for ResveratrolGuy's beta-ngf experiment.  That would be a far less risky approach, IMO.  At least that is based on a bioidentical human protein.  It is a strategy that is constrained to a single protein, rather an unknown mixture of 600+ proteins of who-knows-what.

[static_void]

Sulforaphane might be a good option. Broccoli sprouts contain some of the highest amounts of Glucoraphanin and Myrosinase which are precursors to Sulforaphane.

Most Sulforaphane pills are ineffective since the molecule is unstable at room temperature, therefore it degrades rather quickly.

 

Bioavailability and inter-conversion of sulforaphane and erucin in human subjects consuming broccoli sprouts or broccoli supplement in a cross-over study design.

https://www.ncbi.nlm.nih.gov/pubmed/21816223

 

"This study confirms that consumption of broccoli supplements devoid of myrosinase activity does not produce equivalent plasma concentrations of the bioactive isothiocyanate metabolites compared to broccoli sprouts"

 

Sulforaphane treatment of autism spectrum disorder (ASD).

https://www.ncbi.nlm...pubmed/25313065

 

"Initial scores for ABC and SRS were closely matched for participants assigned to placebo and sulforaphane. After 18 wk, participants receiving placebo experienced minimal change (<3.3%), whereas those receiving sulforaphane showed substantial declines (improvement of behavior): 34% for ABC (P < 0.001, comparing treatments) and 17% for SRS scores (P = 0.017)"

Edited by nephius, 23 November 2017 - 10:22 PM.

[dragon81]

Now they have an offer for 3 boxes of 5ml or 10ml ampoules 

www.gerovitalcosmetic.com