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Wednesday, February 15, 2012

CerAxon & Bob Revs His Engines

Back in October, I was approached via e-mail by a representative for a company that produces CerAxon, a "medical food" which promises to aid stroke survivors in the recovery process. She wrote that she had read my blog and was touched by our story and she wondered if she could send me a free sample of their product on the condition that I blogged about it.

Well, a couple of things came to my mind. The first was: Wow, someone thinks my blog is that popular! Whoo hoo! The second was what is this stuff? as I had never heard of it.

So I did a little online research. The main ingredient of CerAxon is citicoline. Citicoline is--well, I'm not sure what it is--some websites call it a "brain food", others call it a "phospholipid" while yet another said it was a Vitamin B compound derivative. Well, whatever it is, there are certainly a lot of studies about it. Unfortunately, those studies which involve stroke survivors were aimed at immediate post-stroke recovery, i.e. within the first 24-48 hours post-stroke, with very positive results.

So I e-mailed the company rep back and asked her if she thought it would be of any help to Bob, who was now over 12 months post-stroke. She replied that she didn't know and I should talk to Bob's doctor about it.

Bob has seven different doctors, but the doctor I approached about this was his endocrinologist, Dr. P. I choose Dr. P. for a couple of reasons. He is, I think, the smartest doctor Bob has and he is also East Indian and very open to alternative health care methods. Dr. P. was not very familiar with citicoline, though he knew it was "neuroregenerative" nutrition supplement and he told me that it certainly wouldn't hurt Bob, that worst case scenario--it wouldn't do anything. Best case scenario, it may help him. He gave me the go ahead to try it.

So I e-mailed the company rep back and asked how much CerAxon they would send. She replied "ten doses". I did a bit more research and found the usual dosage is administered twice daily for six weeks and ten doses would only get Bob through five days. Then I found out how expensive the stuff is--and realized we couldn't afford, on our meager fixed income, to buy the full six week dose.

I e-mailed her back and told her I could not afford to do it. That I didn't want to start Bob out on something that he couldn't finish. That I didn't want to get his and my hopes up about something that most likely, in that quantity, would not help him at all. And what on earth would I blog about at that point?

I figured that was the end of that, but then the rep e-mailed me back and told me she had gotten the go-head to mail Bob the complete six week dose for free, provided, of course, I blog about it. I was thrilled and agreed and did a bit more research on citicoline to prepare myself for this new therapy. This is before Christmas.

The package never arrived.

I figured it had been delayed by the holidays.

In January, the company rep e-mailed me to ask if Bob had started the CerAxon! I sent her a message back saying we never got it. She replied that she'd look into it, to see if it had been sent.

More waiting. Then, she e-mailed that she would send it again, but unfortunately, she could only send me two boxes, which would enough for ten days. That evidently the original shipment had gotten lost and she was sorry about that.

So I e-mailed her back and told her to forget it. I didn't want to blog about or give Bob a partial dose. That my plan had been to give Bob the full dose, for six weeks, and blog about any improvements in his recovery process. I also mentioned that I have been receiving over 1,000 hits on my blog per month now, thinking that might sweeten the deal.

I didn't hear from her. I figured that was the end of it. As Bob would say, "oh well".

Then yesterday, I went out to get the mail and there was a package, post-marked Feb. 6, containing the full six week dose of CerAxon.

So we are going to start this new nutrition therapy and I am very excited about it. Like I said, there have not been any studies (at least that I have found) on citicoline and chronic post-stroke recovery in human patients, however, I did find two studies done with chronic post-stroke rats. And the results were promising, i.e. improved cognition, improved learning skills, faster recovery than the rats who did not receive the citicoline. Though I do feel very sorry for those lab rats!

There have also been studies linking citicoline with cognitive improvements in Alzheimer's and dementia patients. Studies indicating the citicoline boosts neuroplasticity and we know how important that is to a stroke survivor. One study concluding that it can reverse in "age-related change" in the brains of healthy senior adults. And other studies concluding that citicoline helps improve the memory and cognitive learning skills. And even a few indicating it helps repair vision loss. All things Bob could really benefit from. Which really makes me wonder why no one has done clinical research on the effects of citicoline on chronic stroke survivors like Bob.

I sat down with Bob and explained all of this to him, yesterday. I sometimes wonder just how much he understands, but I never "talk down" to him. So I explained the whole rigamarole it took just to get the CerAxon and all the study results and told him we would start his dose today.

And he said, "Hallelujah! I win!"

This morning I gave him his first dose with his morning meds. The nice thing about CerAxon is it's liquid citicoline, so it's easy to put in his peg tube. After I gave him his meds, I took the dog for a walk. A couple hours later, Bob was sitting in bed making a strange noise that sounded like "um um". When I went over to his bedside to find out what was the matter, I realized he was not saying "um" but "vroom!"

You know, like a car engine: Vroom! Vroom! 

Not only that, he was shifting an imaginary stick shift and moving his right foot as if he was stomping on the gas.

I asked him what was up with that and he said, he felt "good" and "different". Jeepers. Do you think this stuff works that fast? Either way, it's sure good to see him so revved up about this.

Anyway, today we started our own "Pink House Study" on the "Effects of CerAxon on Chronic Post-Stroke Patients" with only one subject (Bob) in this study and I will keep you posted.

Because I promised, here's a link to the CerAxon website:  Their slogan is "Hope, Belief and Courage to Continue After Stroke or TBI" and I kind of like that.

As well as this following link to an article about a lab rat study which concludes that citicoline may be beneficial to chronic stroke patients with cognitive difficulties:


oc1dean said...

Diane, I received the same pitch from the same rep and got a box with 10 doses which since I am 5.5 years out won't use. You can email me your address and I'll mail you the box if you want it.

Anonymous said...

Bob's response to his first dose sounds promising but I know it's early too. Like you, I wonder why there isn't more in depth studies on this. I truely hope it helps Bob. Looking forward to reading his response in the future.
Hugs, Dan

Nikki said...

I really hope this works for you! Seems like Uncle Bob must like it or at least thinks it gives him energy!