CBD Oil for Epilepsy (Part 3) – When CBD Oil Doesn’t Work for Your Child

This is Part 3 of our four-part Epilepsy series. Read Part 1, Part 2 & Part 4

While any parent who has a child suffering from epilepsy will do anything to relieve their suffering, up to one-third of all patients get no relief from the conventional medicines prescribed by their doctors.

Epilepsy cases where CBD does not work

Many parents are turning to CBD oil as their last hope, and while many are getting great results, there are still many more who don’t show any improvement. Is it just that CBD doesn’t work, or are there other factors at play?

Israeli research gives parents fresh hope

The latest research from Israel will give parents hope, as the future of cannabinoid-based medicines may become much more targeted and strain specific.

Dr Deli Meiri is compiling a database of cannabis strains that are being used to treat a range of illnesses. His main focus is cancer, but he is also dealing with epilepsy patients.

In Israel, they already know that the most common strain given to sufferers is not always the most effective. It’s just what was available to doctors when they first started prescribing cannabis.

By looking at the other molecules present in these whole-plant extracts, and the different methods of extraction, they found that patients got very different results even though on the surface the strains were identical or the THC:CBD profile was identical.

Even differences in the growing locations changed the final cannabinoid profile of the plants.

Keep trying different products

What does this mean for parents? If you are a parent who is thinking about CBD—or you have tried CBD oil or other cannabinoid treatments and it didn’t work—how do you find a product that will help?

Going by the latest scientific research, it would make sense to try many different products until you find the one that helps your child.

How could this work in practice? First, shortlist a few companies that have a good reputation. Ask them what kind of cannabis is used and the extraction methods they use.

In most places, they may use certain legal strains of industrial hemp. In places where medicinal cannabis is legal, they may use a variety of cannabis strains to make their extraction. So depending on where you live, you might have very limited options.

Different types of oil

Many companies make different types of oil.

In Europe there are three main types of CBD oil available, depending on the jurisdiction.

< 0.20% THC: Standard EU regulations

< 0.05% THC: Low THC EU regulations

0.00% THC: Zero-THC content

Many companies make a decarboxylated oil, where the extract is gently heated to turn the CBDA found in the the natural plant into CBD.

They may also offer a RAW or ENTOURAGE oil. This is often a full-spectrum extract that contains all of the acidic cannabinoids.

Different oil-extraction methods

You can also buy oil that has been prepared in different ways. The most common are:

• Supercritical CO2 Extraction
• Ethanol extraction
• Infusion in a carrier oil like olive oil, coconut oil, or hemp-seed oil

Don’t give up!

Wow! That’s a lot of different products to try. This is going to get expensive and stressful.

The sad fact is, until there is a comprehensive database available, it is a process of trial and error.

Don’t give up if it doesn’t work. Maybe you just haven’t found the exact product that truly helps your child.

Are GW Pharma and Epidiolex going in the right direction?

The answer isn’t so simple. After many initial trials, GW pharma settled on a formulation that was a concentrated CBD Isolate made from a whole-plant extract. Due to the legalities and controls on pharmaceutical products, they were forced to go for a single, standardised product and put it through clinical trials to get it passed by the FDA as a medicine.

It doesn’t necessarily mean it will be the most effective medicine for your child, just the one that your doctor will give you a prescription for.

For more information on this subject read Part 2 of our Epilepsy Series

Epidiolex trials in Australia

Epidiolex trials began in New South Wales in July 2016 and in Queensland in February 2017.

The results of the NSW trials were published in The Medical Journal of Australia (MJA) in August 2018. The researchers described it as ‘safe’, but with ‘subjective benefit for overall health.” Whilst 30% of caregivers in the trial felt there was significant improvement in their children, only 18% of clinicians thought so. (Queensland Health has not published any results to date.)

Trials of another CBD product—CBD Max by Tilray—began in Victoria in February 2017, with results published in MJA in August 2018. Nine of the 20 families in the trial (45%) reported seizure reduction of more than 50%. The researchers concluded it has ‘potential benefit’.

TGA review of CBD for use with epilepsy

In December 2017, the Therapeutic Goods Administration (TGA) released a set of guidance documents for doctors and patients, i.e Guidance for the use of medicinal cannabis in the treatment of epilepsy in paediatric and young adult patients in Australia. The guidance given by the TGA is based on “reviews of available evidence for the use of medicinal cannabis in five different settings”, undertaken by research teams from several Australian universities. In describing CBD’s place in the ‘therapeutic hierarchy’ the review team noted, “Epilepsy treatment with medicinal cannabis or cannabinoids is only recommended as an adjunctive treatment – that is, in addition to existing anti-epileptic drugs.”

CBD Oil for Epilepsy Series

Part 1 : FAQs: Does CBD Oil Reduce Seizures in Intractable Epilepsy?

Part 2 : CBD Oil For Intractable Epilepsy: The Science Behind Whole-Plant Extract vs CBD Isolate

Part 3 : When CBD Oil Doesn’t Work for Your Child

Part 4: CBD Oil and the Side Effects of Anti-Epileptic Drugs (AEDs)