Using CBD Oil as a supplementary treatment for rare childhood Aicardi syndrome
This article is a summary of an interview conducted with a woman whose baby daughter was diagnosed with Aicardi Syndrome. As symptoms of the syndrome cause severe seizures, the mother began researching and trialling CBD oil as an alternative treatment to traditional pharmaceuticals. The full interview, along with references and help groups can be found at caneaze.com.
We want to stress that this article is not promising CBD as a miracle cure. All of the information that is put forward is anecdotal and based on the mother's experience and research. We have tried to include supporting scientific peer-reviewed references to Emilys (the mother) information where possible, and these can be found in the full interview.
Discovering the Aicardi Syndrome
At 30 weeks into her pregnancy, an MRI scan revealed that her daughter Clover had Agenesis (absence) of the Corpus Callosum (ACC). This missing part of the brain is one of the symptoms of Aicardi Syndrome, but Clover's Aicardi syndrome was not confirmed until she began having infantile spasms at 12 weeks of age.
Aicardi syndrome is very rare, and researchers estimate that there are 4,000 cases worldwide.
Initial Treatment
The infantile spasms started at 12 weeks which coincidentally was on the same day as Clover's first vaccinations. Emily believes that the vaccinations were not the cause of the seizures but a trigger. Scientific research has also shown a link between the pertussis immunisation and infantile spasms.
Luckily, Emily had read about infantile spasms after the initial diagnosis of the ACC during her pregnancy, so she noticed the first spasms, which were subtle and may have gone unnoticed.
Here's a video of Clover having a spasm:
Infantile spasms can cause damage to the brain and if left untreated are thought to be the main contributing factor to future development issues in Aicardi sufferers.
The key to treatment is to stop the infantile spasms as soon as possible. This limits the damage done to the brain. Steroids are used to bring the spasms under control and a very high dosage, particularly for a baby, was required to stop Clover's.
Once the steroids brought the seizures under control, they were very gradually reduced over six weeks.
The steroid treatment had several side-effects with the most noticeable being swelling that affected her whole body.
Once the steroids were reduced, and Clover had seven days without any seizures, a new anti-epileptic medication called Vigabatrin was introduced.
Vigabatrin again comes with side-effects, and Emily believes the drug affected Clover's mental development. Some children have severe reactions to Vigabatrin losing the ability to swallow due to muscle wastage.
Using CBD oil as a supplementary treatment
With so much press about the use of CBD oil to treat epileptic seizures, Emily was keen to explore the use of this natural treatment. She began by talking to other parents of Aicardi children via support groups. These parents were mainly in the US, where CBD is already prescribed by the FDA for two forms of epilepsy.
When she began talking to these parents, she quickly realised that most of them were using CBD oil either on its own or alongside pharmaceuticals.
Emily spoke to one mother who only began using CBD when her daughter was five, and as soon as she started the treatment, her daughter's seizures reduced by 80-90%.
Emily found that other parents were primarily using CBD to control seizures, but there were other benefits too. Many parents believed that CBD encouraged cognitive development.
After the CBD was introduced, many parents saw almost immediate cognitive leaps in their children's development.
Emily also heard that the CBD would protect the brain from pharmaceuticals, helping the brain to create new path pathways.
So many parents that Emily spoke to told her of the positive effects of the CBD oil that she found it impossible to ignore.
She began using CBD oil alongside the anti-epileptic medication to aid her mental development which may be being held back by the medication.
The effects of the CBD Treatment
Emily began treating Clover with CBD at four months old and to find the right product to use she again took the advice of other parents from Aicardi support groups.
Emily was directed to a family run company based in Colorado called Haleigh's Hope .
Their product uses the full spectrum of the plant, which contains the ideal properties of antioxidants and neuroprotectants. This is known as the entourage effect.
As Emily is based in the UK, the THC levels were below the legal requirement allowing the product to be sold legally. The product Emily uses can be bought in the UK here: Haleigh's Hope CBD Oil.
CBD Dosage
Emily was sent a dosage calculator by Haleigh's Hope which was based on her babies weight. A microsyringe was used to administer the oil three times a day.
Every child is different, so you need to gradually increase the dosage until you find the "sweet spot". It's at this level where it is believed to have an ideal therapeutic effect.
Summary
Emily is still using the Vigabatrin alongside CBD oil but plans only to use CBD oil in the future.
Her baby Clover is ahead of her development milestones and has begun crawling at eight months old. The missing part of her brain should make crawling very difficult if not impossible. It's clear the brain has found new pathways in which to coordinate the actions of crawling.
CBD, CANNABIS, EPILEPSY, OILS, AND KIDS, READ MORE...
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