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Save your umibilical cords!
Written by Kristin Ricci   
Sunday, 17 May 2009 09:43

My Husband and I have traveled to China with our son twice now for stem cell transfusions.  We never saved Drew's umbilical cord and we knew for three days that he would be born extremely early.  I don't even remember having any discussions about this with our team of doctors.  I remember thinking briefly about it but I remember reasoning with Mike that the medical team would tell us if they thought we should save it.  We were definitely not in the right frame of mind to be making these type of decisions.  Looking back on the Spring of 2006 I sure wish we would have screamed "Yes, save it!".  We didn't know anything concerning umbilical cord stem cells and the conditions the stem cells can treat.  However we haven't beaten ourselves up over it, we learned a long time ago that worrying and obsessing over your past only makes your present life miserable.  Anyways, my advice for anyone expecting would be to definitely save the umbilical cord because you can never predict the future.  The potential benefits from doing so outweigh any costs associated with it.

I do know that Duke University located in Durham, North Carolina will transfuse a person's own umbilical cord stem for treating cerebral palsy.  I called in the spring of 2008 and Drew was put on a transplantation list since we didn't save his umbilical cord.  The person I talked with did tell me due to his extremely low birth weight, they might not have been able to do the autologous transplant anyways.  However, if Duke University does contact us and is able to do a transfusion with donated umbilical cord stem cells, I will definitely write a post on here to update everyone.  The ability to do this type of transfusion may take awhile in the USA, so my best advice would be to start conducting your own research on what is available in other countries.

 
Vasodilation Day #4
Written by Kristin Ricci   
Friday, 10 July 2009 13:32

Today Mike met Dr. Hammesfahr for the first time while grandma got to sleep in.  It is refreshing to hear from a medical professional the validation that brain injury/trauma can be treated.  It seems like in our country the mainstay focus is on preventing further complications like seizures, hydrocephalus, etc.  What about correcting the problem?  If my liver or kidney are injured then procedures/medications are administered to improve their function.  I guess I feel like we've seen several different neurologists and we've been to the local developmental clinic, and all we get out of the appointments is that Drew has a fantastic smile.  We are also told to continue with physical therapy, occupational therapy, and speech therapy.  Therapy has helped Drew tremendously, but what about the source of the problem?  What about his brain?  Part of the issue is obviously the complexity of the brain, but I feel one of our biggest barriers is the bias...that it can't be healed.

We also have met success because Dr. Hammesfahr has addressed the stem cell therapy Drew had received in China.  All of Drew's doctors back home will not address this with us or talk about it.  It's documented in his file and that's it.  It's like a breath of fresh air or like a mentos commercial when we are able to discuss it with him.

Today we learned a lot.  Dr. H feels that there are a selected few types of "therapies" that will help Drew reach speech and motor milestones.  He listed vasodilation, growth hormone therapy, and hyperbarics (HBOT).  Currently, we are starting up vasodilation with Dr. H this week; however, it will take many years.  He talked a fair amount about growth hormone therapy.  Dr. H explained that children like Drew with brain injury do not produce enough growth hormones.  Growth hormones are essential to kids like Drew because they provide the body with a natural source of stem cells.  He told us to make an appointment with a pediatric endocrinologist and have blood samples drawn.  He did say this may be inaccurate because the body expels growth hormone  in short bursts over a 15 minute time window.  In other words, it may be impossible to get an accurate reading.  A patient could also have a 24- hour urine sample collected.  However, he felt that due to Drew's diagnosis, it's obvious his body is not producing enough growth hormone so the doctor would probably just prescribe growth hormone replacements.  Dr. H also mentioned you have to be careful with this because having a constant level of growth hormone via injections could lead to cancer.  Don't worry, I'll be asking more questions on this because it's completely new to me.

The last therapy he mentioned that Drew should try is hyperbarics.  He did mention that in 10% of the population, HBOT can have adverse effects meaning instead of improvements a person can decline.  Dr. H said that it would be subtle like perhaps a change in tone, personality, or even as small as not being as ticklish.  This information is a tad bit scary to me so i'll be sure to do my research on the facility so that we'll have trained professionals guide us.

Dr. H also mentioned that hyperbarics is useful in conjunction with vasodilation.  Vasodilators improve blood flow but they cannot assist with improving blood flow past scar tissue in the blood vessel.  However, HBOT will help heal the scar tissue, therefore allowing the vasodilators to reach areas past the scar tissue.  This means that more oxygen-rich blood will be able to flow through areas more easily than before.  Does that make sense to everyone????

 We also picked up a new medication today from the Nature Food's Market.  It's called Vinpocetine.  He's going to talk about it when we see him on Monday and possibly start Drew on it.  He said that it's actually a prescription drug in Canada and Europe.  For some reason you can buy it over-the-counter here, he explained why, but I think my brain was on overdrive.  The bottle states, "Vinpocetine enhances brain metabolism by improving utilization of oxygen.  Also, Vinpocetine increases the synthesis of several neurotransmitters that affect such critical brain functions as memory recall, focus and mood."  Mother then stated "maybe I should take one with my gin & tonic every night."

As far as the topical Nitrate, we are to continue administering the teeny, tiny amount three times per day.  If we're going to be out in the heat during the day, he definitely told us to skip the afternoon dose.  He mentioned something about the heat activating it anyways.  As far as any improvements, we haven't seen any yet folks.  We will keep you posted.  Tomorrow depending on the weather/temp. we may drive over to Busch Gardens. 

 
Vasodilation on Thursday
Written by Kristin Ricci   
Thursday, 09 July 2009 09:02

Mike is coming to town today!  He arrives in Tampa tonight via AirTran at 1030pm.  He is bringing a couple travel books with him to help jazz up our little medical trip here.  Hopefully, Drew will be allowed outside this weekend for a little while so that maybe we can hit up Busch Gardens!

This morning was our 5th round of topical Nitrate.  It was applied to his posterior calf again.  Our schedule is changed slightly; today I am supposed to apply the cream myself at noon then we are to go in for another visit at 2pm.  Dr. Hammesfahr also mentioned that he might be writing a new prescription for Drew this afternoon.  He didn't mention what though.

We do have exciting news and I'm going to attribute this improvement to his parents/therapists/grandparents.  Drew was reading a book with gaga and he read the word "hat" outloud for the first time.  For the past couple of weeks he would sound out "h" and "t" together to say hat.  He finally was able to bring them together.  Other than ma ma, da da, etc. "hat" is Drew's first reading word.  Don't worry we definitely gave Drew lots of high-fives and pats on the back.

One other improvement I noticed is that Drew is sitting really well in his carseat.  He sits perfectly straight with his head straight up in the air.  I can actually see several inches of his neck.  He actually looks fantastic to the point of not being able to tell he has a disability.  However, once he is out his tone is very tight.  In fact, his legs are a little banged up from his Kimba Stroller.  The Kimba is fantastic for keeping Drew in a sitting position (which is a challenge!), but it's all metal.  There is always something that he seems to snag his skin on, no matter how much we pad the stroller.  We do have a new special needs stroller on order that should arrive this summer.  I will definitely write up a review on here on how it goes.

Well folks, that's all she wrote!

 
Resources
Written by Mike Ricci   
Wednesday, 13 May 2009 14:25

Below is a list of some websites you may be interested in researching for alternative therapies and treatments.

  • www.stemcellschina.com - We started our research here back January of 2008.  There are a ton of patients' blogs and little excerpts on patients' experiences on this website.  You can also read about various patient's before and after results with the stem cells.
  • www.beikebiotech.com - This website has a lot of information on the company and information on stem cells in the news.  You can also read about patient's experiences on this website too.
  • www.stemcellresearchnews.com - If I ever have time to kill (which is not very often), I go to this website to catch up on current headline news.
  • www.searchclinicaltrials.org - This website is great to keep up-to-date with clinical trials currently underway in the USA...that is if you live here!

I also highly recommend joining the www.yahoo.com group "BIA4KIDS" (Brain Injury; Alternatives 4 kids).  The group moderator is Kirshner Ross-Vaden, RN.  She was the VP of the Foreign Patient Division of Beike Biotech and their lead medical consultant.  However, she recently resigned from this position but she does still run this yahoo group.  This forum has a ton of information on stem cell therapy around the world, vasodilation therapy, HBOT, different supplements to take for brain injury, and a lot more.  If you ever have any questions you can do a search and find the answer on a past post or you can ask the group.  To be honest, I'm not big on posting questions because I can usually find them.  It's been around since 2005.

 
Beike Biotech
Written by Mike Ricci   
Wednesday, 13 May 2009 14:24

My mother was actually the one that discovered Beike Biotech in January of 2008.  She pretty much just googled treatment for cerebral palsy and came across an advertisement for stemcellschina.com.  She promptly emailed us the website link and we thought she was crazy.  We sort of laughed it off.  A few weeks later it sort of popped in my head again, so I started reading a little bit on it.  Then I started reading and researching like a madwoman.  We hit the contact link on the website and 7 months later we were in China!

Beike is a bio-technology company formed in January of 2005 however the collaborating scientists have been treating patients with stem cell injections since 2001.  Stem cell injections are available for people suffering from Ataxia, Autism, ALS, Brain Trauma, Cerebral Palsy, Guillain-Barre, Encephalatropy, MS, ONH, Spinal Cord Injury, Stroke, and many more diseases/disorders.  The main research labs are currently in Shenyang, Shenzhen, Zhengzhou, and Hainan.  Beike is big on utilizing a double check system to ensure the umbilical cord blood is disease free.

We have had only positive experiences working with this company.  The employees promptly answer all questions and are greatly accommodating.  Everything is organized and we feel safe in their hands.  If anyone is interested in pursuing umbilical cord stem cell treatment, we highly recommend contacting this company.

 
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