More Is Better.....especially when it's Ginkgo Biloba!

I have shared with all of you on my blog that the dose for ginkgo biloba on the Changing Minds Foundation website is a minimum dose to see results.  I have suggested to all I meet that dose is important and the more you give the more results you will see.  My son, Neal, takes 4 to 5 times his weight in ginkgo.  See below what happens when you do increase the amount of ginkgo your child takes.

Below is an email I got from a parent who recently increased her daughter's ginkgo:

My daughter, Whitney, is 7 and has been on NutriChem’s customized vitamin therapy since July, 2010 where we saw major improvements globally with her.  She was diagnosed with PDD-NOS in October, 2009.  I’ve written about her vitamins under the blog section of our website www.bcdsc.org  As noted she went from no expressive language to finally developing expressive language.  Even though she was on 100 mg per day of gingko biloba her processing seemed to have stuck at 3.  A few weeks ago I attended the AutismOne Conference in Chicago and finally got to meet Dr. Teresa Cody.  After our talks, and her suggestion that I increase the gingko significantly, on May 28th we began increasing Whitney’s Gingko to 220 mg per day (50 mg in morning with custom vitamins, 120 mg at lunch with AOR , and another 50 mg before dinner with custom vitamins).  She weighs 42 lbs.  Within a week her teachers at school were noticing increases in ability and more talking (not always clear but more).  One teacher she has on Friday’s was really amazed at the change she has seen week to week.  In addition, I have noticed that Whitney is sleeping longer in the mornings.  So far no 6 am (or earlier) wake ups. 
On June 7th we increased the dose to  110 mg with breakfast, 120 mg with lunch and 110 mg with dinner (340 mg per day).  On June 10th here is what happened:

I’ve been really puzzled this last year as to why Whitney has still only been able to scribble and draw a few circles (roughly) and nothing else.  At lunch today Whitney was drawing on one of those erasable pads and did this:

Drew two parallel lines with a line across the top and said “house”, then put a line in the middle and said “door”, then drew a line with some curly things on the top to the left of the house and said “tree”, then on the other side drew another tree and said “another tree”, then scribbled the bottom and said “grass”.

This for my darling 7 year old daughter is really significant.   All of it, we believe from ramping up the gingko biloba.  Thank you to all the parents who have been saying how important the gingko can be for our children and to Teresa Cody for suggesting that we should try and significantly increase the dosage for Whitney.

Whitney’s teachers, the school aids and other students are all noticing that she is functioning better, not just cognitively but also better co-ordination on the playground and the gym.
We are really impressed and so thankful for Teresa Cody.  It’s unfortunate that Teresa did not get an opportunity to speak at the AutismOne Conference, however, we are very much looking forward to having her on our Cruise and I look forward to hearing more about Gingko and Prozac.  Hopefully she will be speaking in a city close to where I live before the Cruise as I’d like to hear all of her talk.
Best regards,
Rosalie Newell-Wagner
2013 Down Syndrome Cruise Conference
http://www.rosalienewellwagner.cruiseshipcenters.com/Promotions.aspx

Another Look at Ginkgo Biloba

Ginkgo biloba may help improve memory, and could even protect against Alzheimer's.

September 1 , 2006
Researchers found significant improvement in verbal recall among a group of people with age-associated memory impairment, who took the herbal supplement ginkgo biloba for six months, when compared with a group that received a placebo.

The UCLA study used positron-emission tomography (PET) and found that for people taking ginkgo biloba, improved recall correlated with better brain function in key brain memory centres.

However, actual changes in brain metabolism, measured by PET for the first time, did not differ significantly between the study's two volunteer groups. Researchers noted that although all volunteers taking ginkgo biloba experienced better verbal recall, a larger sample size might be needed to effectively track brain metabolism results.

"Our findings suggest intriguing avenues for future study, including using PET with a larger sample to better measure and understand the impact of ginkgo biloba on brain metabolism," said Dr. Linda Ercoli, lead author of the study and an assistant clinical professor at the UCLA Neuropsychiatric Institute.

Gingko biloba is a Chinese herb often used as a dietary supplement to treat memory loss. The UCLA study and previous controlled clinical trials on ginkgo biloba's effects on verbal recall have yielded conflicting results.

"The research also raises questions regarding the significance of supplement quality and treatment duration," said principal investigator Dr. Gary Small, a UCLA professor on aging and director of the Aging and Memory Research Center at the UCLA Neuropsychiatric Institute. "The Food and Drug Administration does not regulate dietary supplements, and the quality of retail supplies varies widely. We used only the highest grade of ginkgo biloba in conducting our research."

To my surprise and delight I have not found this to be the case. I have found herbal products very consistent. 

Small also noted that the six-month UCLA study is one of the first to measure the effects of ginkgo biloba over a longer period of time. Most previous studies have measured the effect of the supplement over 12 weeks or less.

This is a very important point. Most people would be surprised to find out most studies are conducted in very short time frames. Normally, less than 12 weeks. 

The study examined the impact of ginkgo biloba, compared to a placebo, in 10 patients, aged 45 to 75, who did not have dementia but complained of mild age-related memory loss. Four subjects received 120 mg of ginkgo biloba twice daily, and six received a placebo or inactive substance such as a sugar pill.

Researchers used cognitive tests to measure verbal recall and PET to measure brain metabolism before and after the treatment regimen. Magnetic resonance imaging was used to determine regions of interest to be examined by PET.

Funding for the study was provided by Dr. Willmar Schwabe GmbH & Co., the John Douglas French Alzheimer's Foundation, the Louis and Harold Price Foundation, the Larry L. Hillblom Foundation and the UCLA Center on Aging.

A study in France, published in the Journal of Gerontology, has revealed interesting results about the role of Ginkgo special extract EGb 761 in the prevention of Alzheimer's disease. Cognitive performance appears to be maintained for longer as a result of long-term treatment with Ginkgo special extract EGb 761. There also appears to be a positive effect in preventing the occurrence of Alzheimer's disease.

Very important point for us with loved ones with Down syndrome.

The primary objective of the Epidemiology of Osteoporosis (EPIDOS) study, a large-scale prospective multicentre study, was to investigate the risk factors associated with femoral neck fracture in elderly women. As numerous health-related data, including drug therapy, were recorded for the subjects over a period of 4 to 7 years, the study data bank lends itself to further analyses. The data analysis presented here investigated factors associated with the development of Alzheimer's disease.

The study enrolled a total of 7598 subjects of at least 75 years of age, 1462 of whom were in the Toulouse centre. On completion of the study, data on the cognitive status of 714 patients in the Toulouse centre were available. 414 who had no cognitive impairment at all on inclusion in the study (score of at least 8 in the Pfeiffer test) were selected from this patient group. Of these, 345 women were still cognitively unimpaired by the end of the study, 69 had developed dementia of the Alzheimer's type.

Interestingly, the women who still had their full cognitive faculties had taken medications such as the Ginkgo special extract EGb 761 [another name for Ginkgo Biloba] or nootropics to stimulate blood circulation (category C4A medicines) significantly more frequently than the women who developed dementia. Additionally, the healthy women significantly more often had been taken these drugs for over 2 years or longer than the dementia patients. In contrast to the other C4A medicines, evidence of the anti-dementia effect of EGb 761 became apparent after only one year of taking this substance.

This finding is significant. It is long term use that made the most difference. So, even if you don't SEE a difference in symptoms know it may help reduce dementia in Down syndrome as well as the elderly.

The findings of this study give every reason to believe that long-term treatment with Ginkgo special extract EGb 761 enables cognitive performance to be maintained for longer, and indicate that the development of Alzheimer's disease can be prevented or at least delayed. Delayed is GOOD!

Original source:http://www.50connect.co.uk

A Note From Neal's Tutor

My son, Neal, has a tutor 2x a week after school. She has been working with him for about 3 years. The best part is she doesn't know anything about Down syndrome. She is a retired teacher and she literally just teaches him. She doesn't know his limitations. Yesterday I came home to this note. There is a political joke --- we are in Texas after all. She doesn't know I have changed anything. I haven't told her about the time-released ginkgo at night.

I have scheduled a sleep study for Neal next Tuesday. We will see if Ginkgo Biloba is allowing more deep sleep and more REM. 

can sleep be as easy as GB?

NO.   No. no. it can't be as easy  as Ginkgo biloba around the clock. Can a gaba antagonist be that  important? I gave Neal GB 120 mg before bed 4 nights in a row. Could that be the answer to the sleeping problem? The next morning  he told me ' I slept well and I am in SUCH a good mood!" Can that even be possible? I am not adding words to his sentence or filling in any blanks. That is what he said yesterday morning. 
Does it mean we give a GABA antagonist around the clock? I don't know. But it does make sense.  Wouldn't it be important to be balanced  all day and all night?
This morning he told my husband, "I'm not tired."
Don't jump to any conclusions from only 2 days but I got the idea from a study.
GABA A Receptors Inhibit Acetylcholine Release in Cat Pontine Reticular Formation: Implications for REM Sleep Regulation 
The entire study is available online. They used a GABA antagonist and triggered REM sleep. Neal has 2-3% REM in sleep studies [he has had 2]. I'm about to set up a third study. I'll let you know how it turns out.
I don't know why but I never thought about Ginkgo Biloba's half life before. Ginkgo's 1//2 life is about 6 hours and the Biloba piece has about a 3 hour 1/2 life. Arrrgh! I think he ran out over the course of the day and by night he was off balance and overly GABA inhibited again.

A Little History Lesson

I thought it was time for a little history lesson for all the newbies to the DS world. In 1997, Neal was born-I'm dumped into the DS world without any notice. All of a sudden, the internet is something I need. I bought a laptop and dialed up the internet. Can you imagine? how slow could we go......
Research started. I found the library.....pubmed.
Then I found forums where people talked to each other. So, I joined and began to participate. Soon, it became very apparent that there was a lot of bickering going on. Actually, is was down and dirty verbal fighting. Do you know what people were fighting about? Whether or not DS should take vitamins. Are you kidding? We have one of the most complex genetic conditions and people are arguing about vitamins!

I soon walked away from the forums and continued to read the science. A small group of us about 10 emailed each other what we found in the scientific studies. The pace of the research was slow. We wanted something now and it wasn't until 2004 that Stanford published the study about the GABA antagonist. Then, it wasn't until Feb. 2005 that we found ginkgo biloba. Luckily for Neal an avalanche of information came out, compared to the first half of his life. The rest of the Changing Minds Protocol came about in 2006 and 2007. We may not know everything and there is still a long way to go but yesterday I came home and he had written this paragraph with his tutor. I called her this morning to make sure he had done it himself. She said, of course. Tomorrow, I will list all that he is now taking because we have added to the protocol.



Cure Down Syndrome? (Part 2)

By Christy Sanchez
National Down Syndrome Society's (NDSS) Position The following excerpt is taken directly from the National Down Syndrome Society's website:

“Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.”

The only difference between NDSS's position and that of Changing Minds Foundation is that the future is here and treatment to improve cognition is available now.

Changing Minds Foundation Holds 1st National Conference CMF held its 1st National Conference on July 23-24, 2010, in Houston, Texas. Attendees came from numerous states and as far away as Singapore. Thanks to a generous stipend provided by the Heart of Illinois Down Syndrome Association (HOIDSA), I was able to attend the conference. The following report is a summary of information gathered at the conference and information from the CMF's website and blog.

Neurobiology
The terms neurobiology and neuroscience can be used interchangeably. They refer to the biology or science of the nervous system. Researchers in the Department of Neuroscience at Stanford University are dedicated to developing theraputic strategies for normalizing cognition in people with Down syndrome Neurotransmitters regulate learning. In the brain of a person with Down syndrome these neurotransmitters are a little off or out of balance. They need a remedy to bring them back into balance. The good news is that we can treat this imbalance just like any other psychiatric disorder – with modern medicine. Just as life
expectancy has improved since 1983 with medical advancements, cognition can be improved with medical advancements - now!

What Problems are Addressed by the CMF Protocol?
The Changing Minds Foundation (CMF) has created a treatment protocol to address four of the neurological problems identified in Down syndrome. Most people with Down syndrome fall into the mild to moderat range of intellectual disability so even a small increase in cognitive ability (or IQ) can move an individual from being dependent on others throughout their lives to becoming independent members of society. The following is based on information taken from CMF's website and conference handbook.

Brain Problem 1: The major cause of cognitive impairment in mouse models of Down syndrome is over inhibition by the GABA receptor system. In 2003, Stanford University researchers discovered that the GABA receptor, an inhibitor, was continuously stimulated. Since the GABA receptor is an inhibitor of brain function, this stimulation actually causes a decrease in cognition. The nerves in the memory area of the brain are prevented from firing efficiently. Another way we can think about this is the use of alcohol or benzodiazepenes, (Valium and Versed). Both alcohol, Valium and Versed stimulate GABA receptors in the
brain. This results in slowed activity in the brain. Just as many of us have seen people's brains (and thus cognitive function) altered by alcohol or tranquilizers so too may the brain of one with Down syndrome be slowed by over-inhibition.
Related Articles for Problem 1:
Stanford, PTZ, & GABA
http://med.stanford.edu/news_releases/2007/february/down.html
Ginkgo Biloba & GABA
http://www.changingmindsfoundation.org/documents/ginkgobiloba.html

Remedy for Brain Problem 1: To get the proper level of GABA (so that learning can occur), a GABA antagonist was used to turn the inhibition down. Bilobalide, a component of Ginkgo Biloba extract, reversed the cognitive impairment in the mouse model. Stanford researchers are raising money to do a formal clinical trial with a GABA antagonist drug called PTZ, but it is not yet approved by the FDA - and this process will unfortunately take up to 10 years.
Ginkgo Biloba (also a GABA antagonist) is widely available in health food stores - now. Participants using the CMF protocol are realizing good results using Ginkgo Biloba. We now know that lack of memory is the lock on the door of learning for people with Down syndrome. Ginkgo Biloba is the key for opening the door of learning! Protocol participants as young as five weeks old are using Ginkgo Biloba.

Check in Tomorrow for Brain Problem # 2