Sunday, March 20, 2011

Ginkgo: The Hows and Whys for Down Syndrome

Why ginkgo for those with DS?

Supplementing with Ginkgo Biloba is a good first step to getting your loved one's brain chemistry in order. Ginkgo is found to help combat the GABA overexpression (too much) which is common in those with Down syndrome. Not all kids with DS have too much GABA although most of them do. Take a look at the symptoms to see if your child fits the criteria. A quick way to find out is to give ginkgo at night for a week. If your child sleeps better, then it's helpful. If not, discontinue and maybe look to see if your child actually needs more GABA.

In experiments with a mouse model with DS, researchers at Stanford University discovered the main culprit to brain dysfunction in those with DS: They found that the GABA receptors, which regulate inhibition in the brain, are over-active. This means the receptors are "on" continuously. As a result, the nerves in the memory and learning area of the brain aren't able to fire correctly. In other words, the nerves are shut down. To compensate for increased activity of the GABA receptor, the scientists successfully used Ginkgo, a GABA antagonist, to turn it down.

For details on the effects of ginkgo in the general population, see this article.

What are the symptoms of GABA overexpression?

Compiled by Teresa Cody of the Changing Minds Foundation. I think you'll recognize these symptoms as common to those with DS!

Organ -- Symptom

Central Nervous system (Brain) 
sleepiness, drowsiness, sedative
Airway Epithelium 
 produces mucous; decreases smooth muscle tone
decreases muscle tone
increase NREM/ Decrease REM
can cause stomach upset
Small intestine
control NO-related spontaneous relaxations 
of the antrum and duodenal circular muscle 
Large intestine 
numerous functions including 
autocrine, paracrine, excitatory and inhibitory 
inhibitions of urination with increases in bladder capacity
insulin secretion possibly effected, can inhibit secretion of the 
blood-glucose-elevating hormone glucagon
acts as an inhibitory signal for hepatic cell proliferation
 shortness of breath
 tickling, itchy
 eye growth and refractive development 
 Reflux (acid and nonacid)
Laryngeal motorneurons 
decreases laryngeal moror neurons, 
inhibits adductor and abductor
Type II Alveolar Epithelium (Lung)
accelerates fetal lung development, likely through an 
enhanced cell proliferation and/or fluid secretion

Ginkgo improves sleep?

In most people w/DS, ginkgo will help restore their REM sleep, which is important for memory retention, growth and much more. Untreated people with DS show a significant reduction in percentage of REM sleep, a marked delay in first REM latency and a statistically significant decrease in high-frequency rapid eye movements during REM sleep. The percentage of REM sleep in humans can be considered as an index of brain "plasticity" and the high-frequency REMs can represent an index of the brain ability to organize information, which is vital for learning and memory.

The average REM of a typical one year old child is 30%. When Jett is on ginkgo, his REM is at 22.3%, which is remarkably good. His doctor said that Jett's sleep study results were the best he had ever seen in a person with DS in his eleven years of experience. For more on sleep and his sleep study, see Jett's Sleep Study: Mommy's Nightmare and Sleep Study: The Results.

The biggest change I noticed when Jett started taking ginkgo at night was that he no longer thrashed around and instead, stayed asleep! He was more still and relaxed all night. Our life improved greatly!

For great explanations on how ginkgo works to restore REM, check out Teresa Cody's blog post #1 and #2.
How do I choose a good ginkgo product?

To make sure you purchase safe ginkgo, consider this:

All ginkgo is from China. IMO, China can not be trusted to self-regulate. Therefore, the supplement company has to self-regulate and test the ginkgo for any heavy metals.

So, not only do we have to look for products with:

1) Correct ratio: (most ginkgo meets this criteria)
Flavone glycosides 24%
Terpene lactones 6%

2) Must have less than 5 ppm of ginkgolic acid


3) The company must spot-test, on a regular basis, random batches of their gingko to make sure it is not tainted with heavy metals. (Ginkgold for sure, does this and Nature's Way as a company, does this. Kirkman tests well. Such testing also needs to be done for fish oils. Source Naturals is good. Rainbow Light is hit or miss.
Metagenics is reliable as well. Companies from Utah seem to be the most reputable and most in California because they have stricter laws. I'm not done researching all of this though.)

It would be great if each of us (you) could email or call your ginkgo company to find out their company's policy and post the answers to save us all a lot of time.

In short, we want to be giving our children SAFE products. At the very least, do no harm...

Use only standardized products, as their level of Ginkgolic Acid is reduced to under 5 ppm (parts per million). Non standardized products can cause serious allergic skin reactions due to higher amounts of Ginkgolic Acid content. Look for these two statements show that the product you are using is standardized: "24% Ginkgo flavone glycosides and 6% terpene lactones" or "Ginkgo special extract EGb 761."

Standardized products also guarantee a fixed amount of terpene lactones, including Bilobalide, which is the active component in the therapy for Down Syndrome. If you are using a product that doesn't state one of the two above mentioned things, contact the manufacturer to verify (and share their response with us) or discard it right away.

For brands that fit this criteria, see the DS Day to Day amazon store.

Life Extension Ginkgo

Prothea Brand Ginkgo

Doctor's Best Extra Strength Ginkgo -- 120 mg - 120 Capsules $7.52

Doctor's Best Extra Strength Ginkgo -- 120 mg - 360 Vegetarian Capsule $20.24

SW892 Swanson Premium Ginkgo Biloba Extract does list <5 ppm ginkgolic acid on the label. This product is also standardized to 24% flavone glycosides, and 6% terpene lactones. However, item SWU033 Swanson Ultra Timed-Release Ginkgo does not specifically list the amount of Ginkgolic Acid.

Link to the brand that they used in the actual study: Nature's Way Ginkgold Note: If you buy the Ginkgold tablets, you'll have to crush the tablet.

I don't recommend the Vitacost brand Ginkgo because they can't verify the level of ginkgolic acid in their product.

Honeycombs --- is a safe, trusted brand, but liquid ginkgo is harder to dose because the strength is not equal to the solid form. Teresa Cody does not recommend that you use it. If you do, however, make sure it's alcohol free. Honeycomb has an alcohol free liquid version (that I used with Jett until I found out about the dosage). If your infant is not eating solid foods yet, you may want to try this liquid version.
For liquid dosage, you can go here:
On the left side of the screen, click the folder "Supplements & Drugs" and then the folder "Ginkgo" and then the folder "Dosage."

Time Released Ginkgo that Teresa Cody uses: Natural Sunshine.

If you buy from vitacost, be sure to get $10 off your first order.

Word of caution: if your child is suffering from epilepsy or another seizure disorder, talk with your health care provider first. See side effects below. If you email me, I can get you in contact with several moms whose babies had seizures (unrelated to ginkgo) but are now taking it with no problems.

According to the Changing Minds Foundation, the minimum dose is 3.0 mg per pound to see results.

Example: 3mg x 18 lbs = 54 mg.

If each capsule is 120 mg., you'll be giving him 1/2 a capsule in the morning, 1/2 in the afternoon and then 1/2 in the evening. Your goal is to get him taking this 3x a day, about 7 hours apart, with the largest amount before bed. Once he's old enough to swallow pills, you can move him to the time released tablet that he can take once in the morning.

Below is a conservative introduction. You can modify it as you wish. But wait at least a week before you introduce anything else.
Week 1- give him 1/4 of a capsule (30mg) in the morning. (Always introduce a new thing in the morning so that you can best notice & deal with any side effects.

Week 2- give him 1/4 of a capsule in the morning & 1/4 of a capsule 7 hours later. (GB has a half life of 7 hours.)

Week 3- give him 1/4 of a capsule in the morning & 1/4 of a capsule before bedtime. (During this period, your child may have a change in sleeping patterns, but it will get back into a normal pattern in a week or so.)

Week 4- 1/4 of a capsule in the morning, 1/4 of a capsule 7 hours later & 1/4 of a capsule 7 hours after that. (That's 90 mg.) If you see that he is easily bruising, or shows eye related symptoms, then cut back on the amount.

Once you get to week 5, you can increase it as he gains weight.

Jett hasn't experienced any adverse effect of ginkgo and he's been taking it since 3.5 months of age.

I would love to switch to time release, but Jett can't take tablets yet & grinding would defeat the purpose. So, I'm giving it about every 7 hours. When he awakens early in the am, I give it then because it usually is about 7 hours after I last gave it. It seems to allow him a little more calm sleep for the rest of the morning. (Plus, the less he thrashes, the more I sleep!)

I do give Jett more than the minimum of GB. At 16.8 lbs, he is getting a full capsule a day, 120 mg. I slowly working him up to the full potency of one of my capsules: 120 mg spread throughout the day. Teresa Cody, of CMF, said once you see easy bruising, you have to back down on the dosage.

Here is a great study about the relationship of GABAa (Ginkgo helps restore proper use of GABA) and the production of REM. The full text is available at this link

GABAA Receptors Inhibit Acetylcholine Release in Cat Pontine Reticular Formation: Implications for REM Sleep Regulation

Jacqueline Vazquez and Helen A. Baghdoyan

Department of Anesthesiology, University of Michigan, Ann Arbor, Michigan 48109

Submitted 2 February 2004; accepted in final form 10 June 2004

This study used in vivo microdialysis in cat (n = 12) to test the hypothesis that gamma aminobutyric acid A (GABAA) receptors in the pontine reticular formation (PRF) inhibit acetylcholine (ACh) release. Animals were anesthetized with halothane to hold arousal state constant. Six concentrations of the GABAA receptor antagonist bicuculline (0.03, 0.1, 0.3, 1, 3, and 10 mM) were delivered to a dialysis probe in the PRF, and endogenously released ACh was collected simultaneously. Bicuculline caused a concentration dependent increase in ACh release (maximal increase = 345%; EC50 = 1.3 mM; r2 = 0.997). Co-administration of the GABAAagonist muscimol prevented the bicuculline-induced increase in ACh release. In a second series of experiments, the effects of bicuculline (0.1, 0.3, 1, and 3 mM) on ACh release were examined without the use of general anesthesia.

States of wakefulness, rapid-eye-movement (REM) sleep, and non-REM sleep were identified polygraphically before and during dialysis delivery of bicuculline. Higher concentrations of bicuculline (1 and 3 mM) significantly increased ACh release during wakefulness (36%), completely suppressed non-REM sleep, and increased ACh release during REM sleep (143%). The finding that ACh release in the PRF is modulated by GABAA receptors is consistent with the interpretation that inhibition of GABAergic transmission in the PRF contributes to the generation of REM sleep, in part, by increasing pontine ACh release.

Possible Side Effects

Most children with DS who take ginkgo have no negative side effects. But, a few rare kids with DS actually can't take it at night because it makes them overactive rather than help give restful sleep! If this is the case, you may want to see if your child really does need ginkgo (since that's a hint that he doesn't). You can get a test from a naturopath to see the GABA levels. A few, rare kids with DS actually need GABA rather than need ginkgo to slow the GABA down! FYI: Needing GABA is also a hint that your child may be on the Autism Spectrum.

If your child starts to have dilated pupils, an inner eye pull (one-sided crossing) or nystagmus (eye twitching), reduce or stop the ginkgo dose to see if it is related to taking the ginkgo. Some moms have reported this in their child, but say that it goes away immediately after reducing the dose or eliminating gingko altogether.


"There have been published case reports of generalized convulsions and vomiting within several hours after ingestion of large amounts of ginkgo nuts/seeds, including in young children and healthy individuals with no known personal or family history of epilepsy. Many more cases, including fatalities, occurred in Japan in the 1930s to the 1960s during a food shortage when ginkgo nuts served as an important source of food. Some investigators have suggested that the amounts of ginkgotoxin in commercial extracts are too low to exert a detrimental effect. Nevertheless, a case report describes two elderly, previously well controlled epileptic patients who presented with recurrent seizures within two weeks of initiating treatment with a ginkgo extract. Both patients remained seizure-free several months after discontinuing the extract, with no alteration to their anticonvulsant medications."

The active ingredients in Ginkgo biloba extract account for its antioxidant properties and its ability to inhibit platelet aggregation. Consequently, this herbal product is promoted for use in improving cognitive function and blood flow. To date, however, at least four reports of spontaneous bleeding in association with use of Ginkgo biloba have been published.

One report described a 70-year-old man who presented with bleeding from the iris into the anterior chamber of the eye one week after beginning a self-prescribed regimen consisting of a Ginkgo biloba concentrated extract (Ginkoba), in a dosage of 40 mg twice daily. His medical history included coronary artery bypass surgery performed three years previously. His only medication was aspirin, in a dosage of 325 mg per day, which he had taken since his bypass surgery. After the spontaneous bleeding episode, he continued to take aspirin but discontinued the ginkgo product. Over a three-month follow-up period, he had no further bleeding episodes. Interaction of the ginkgo product and aspirin was considered the cause of his ocular hemorrhage.

If your doctor told you not to give ginkgo until your child is over the age of 3 because of possible seizures, consider this:

Things to consider regarding this advice...
First, ginkgo has been used for over 5000 years.

Second, ingestion of too many Ginkgo seeds (not ginkgo leaf) has been known to cause seizures. The ginkgo we, in the US use, is not in that form. The reports of seizures are from Japan, because they consider the Ginkgo seed a delicacy. The methylpyridoxine, which causes the issue, has been cleaned out of the extracts sold in the US.

Third, herbs are highly regulated. A high quality Ginkgo product such as Ginkgold, or Nature's Way products would be the smartest route.

Fourth, to be on the safe side, patients treated with agents that can lower the seizure threshold should preferably avoid the use of products containing ginkgo biloba.

Drug interactions

(Aspirin, warfarin (Coumadin), ticlopidine (Ticlid), clopidogrel (Plavix), dipyridamolePersantine)

Ginkgo biloba may also interact with warfarin (Coumadin). A 78-year-old woman who had been taking warfarin for five years after coronary bypass surgery suffered a left parietal hemorrhage after using a ginkgo product for two months.5 No change was noted in her prothrombin time. The intracerebral bleeding was attributed to the antiplatelet effects of ginkgo.

In another reported case,6 a 33-year-old woman was diagnosed with bilateral subduralhematomas after almost two years of ingesting Ginkgo biloba, in a dosage of 60 mg twice daily. Her other medications were acetaminophen and an ergotamine-caffeine preparation, which she used briefly. While she was taking Ginkgo biloba, her bleeding times were 15 and 9.5 minutes. Within 35 days after she stopped taking the ginkgo product, her bleeding times were normal (three to nine minutes).

An additional case of spontaneous intracerebral hemorrhage was reported in a 72-year-old woman who had been taking Ginkgo biloba, in a dosage of 50 mg three times daily, for approximately six months.7 No history of head trauma could be elicited.

Until further information is available, patients who are taking garlic, vitamin E,8 warfarin, aspirin or other drugs with antiplatelet or anticoagulant effects should be cautioned about potential interactions with ginkgo products. Patients who are taking ginkgo products should be counseled to inform their physician about unusual bleeding or bruising, new-onset headaches or vision changes.
Jett was on ginkgo while taking his heart meds (Digoxin & Enalapril) and suffered no side effects. His CBC at the time showed his platelet count was a little low. My pediatrician was not concerned, but agrees that I should be watching carefully for any bruising, which I haven't seen.

Also see the Ginkgo page on the Einstein Syndrome Website



Anonymous said...

How do you get your son to take the capsule? I opened it and put it in various liquids and foods but could NOT get my son to take it. I tried it and it was disgusting so I can't blame him.

I bought the liquid Honeycomb because I figured it was better than nothing. He is 6 years old.

Andi Durkin said...

Totally understand! I put it in a little bit of cashew butter or almond butter and he'll take it. I used to mix it with prune juice and put it in his mouth with a needle-less syringe before he ate solids.

Anonymous said...

Hi Andi, my son is just 6 months old. Is it safe to use Ginkgo Biloba for him at this age? Or should this be used once he turns 2years old?

Andi Durkin said...

From the research that I've read, that it's the seeds/nuts that caused the seizures, I felt it was okay to try the (leaf) extract for Jett at 4 months old. For him, it's been fine. You'll just have to decide what you feel comfortable with.

Rhiannon said...

Speaking at hat age can this protocol be started?

Andi Durkin said...

It's up to you to decide when to start. You can ask Teresa Cody of Changing Minds Foundation and see what she says. There are not many doctors out there that would know enough to have an opinion.
I know parents who started their baby very early with the ginkgo and other items on the CMF protocol as well as multivitamins and had good success. Some tried and had to stop and try again when their baby was a little older. For me, I would have taken a lot of this myself since I was breastfeeding. I didn't find out until Jett was 3 months old so that's about when I started introducing them to him.
There aren't any full on studies of babies with DS and many of these items, so you need to be observant.

Anonymous said...

So does this actually work ? What kind of cognitive milestones has your son achieved?

Andi Durkin said...

Yes! Take a look at some videos of Jett. Check out the post called "Jett reading aloud."
You can also go to "Start Here" and read about some of what he's doing.
Email me and I can let you know what he's doing now.

Andi Durkin said...

I should say, for Jett and many other people with DS, it works great. With a small percentage, it doesn't work-- makes them too hyper. I'm thinking it's because not all kids with DS have too much GABA. We're all individuals.

Anonymous said...

Thank you, i purchsed a 180 capsule bottle for my 8 yr old brother today and will begin to give it to him with his meals tomorow. Do you think 60mg 3 times a day is too little for his bodyweight of 65lbs? or will it be enough to see some benefits?

Thanks again for responding and all the best to you and your son.

Andi Durkin said...

Make sure your parents know your plan and why. You can start with a small dose like you are thinking at first to make sure he's not allergic or anything.
If everything seems to be okay, and your parents agree, you can slowly increase the dose to 65lbs x 30 mg which equals 650 mg three times a day.

I don't know if you'll see much of a difference at that low of a dose (60mg), but you might. If you/your parents are concerned about that much, you might want to consider giving the full dose only at night for a while. To me, I see the biggest benefit for my Jett with the night time dose because I know he's getting the proper sleep.

It is scary at first, but I haven't regretting giving the ginkgo to Jett.

Good luck! Keep us posted on your observations.

Aria Hanson said...

My son is only three months. I read the liquid form of ginkgo not as good as capsule. Would you wait until it is time to introduce solid foods?

Andi Durkin said...

I did start Jett on the liquid ginkgo before I introduced solids. Maybe after you finish a bottle of that, you can slowly add the powder from the capsule. Some babies can tolerate it early, some can't. It is harder to dose, but you'd have a better chance of getting it into him with the milder tasting liquid.

Anukai said...

Thanks for the post above.My son just turned one.Would like to try him on gingko but while going through the brand you recommend Ginkgold , I realise that there is the Max strength as well.Dont understand which one I should be giving him.And he is 18LBS now.Thank you.