From Clinically CBD Co-Founder Tony Asfour & Kirsty Ohagan
Our success with CBD, and our son Vinnie, started in November 2019 and still to this day is helping him.
Vinnie was diagnosed with Multiple Cavernomas, which is a very rare genetic disease, that creates bleeds on the brain. Unfortunately, in early February 2018, Vinnie suffered his first bleed, and thankfully Kings College Hospital managed to stabilise him. After an MRI scan it was discovered that little Vinnie at 13 months old had over 40 cavernomas.
This terrifying and upsetting news was such a shock for the whole family, and resulted in Vinnie developing Epilepsy. After spending 8 days at Kings College Hospital, the neurosurgery and epilepsy teams made a plan to control his condition with anti-epilepsy drugs. After a meeting with the neurologist, he made us aware that another bleed was likely and if he made a year without a bleed, they would be amazed.
The awful news made our lives stand still, resulting in constant worry 24 hours a day. A further bleed occurred 11 months later, resulting in severe epilepsy. Vinnie suffered constant absence seizures, even through the night, and was unable to feed himself. He required an NG tube for 6 months. While the medication helped, it didn’t stop the epilepsy.
As we know, medication can have horrid side effects, especially in children, damaging the IQ, and affecting the development of bones, teeth, and gums. The combination of three anti-epilepsy drugs (AEDs) stabilised him as much as possible.
In January 2019 Vinnie had another bleed, this time being so severe it required brain surgery that thankfully was done in April. From the second bleed Vinnie’s epilepsy was out of control, having so many absence seizures that in all, 9 doses of epilepsy drugs were needed each day, as well as regular hospital stays. It was heartbreaking seeing our son so helpless and poorly, and I knew what damage the AEDS drugs were doing. At one stage the clobazan medication almost put him in a coma. Thankfully, the afternoon dose was removed and his body was able to cope a little better until brain surgery day.
Six months after surgery and rehabilitation and having done lots of research, I knew CBD was the answer to reduce the AEDs. Slowly and gradually with the final agreement with David McCormick at Kings and Ruth Williams from St Thomas’s the Evelina, it was agreed that I could self-fund the start of Vinnie’s journey with CBD. Gradually he was weaned off 2 AEDs.
The emergency drug for seizures lasting longer than 5 mins was Buccalam – midazlom, which suppresses the central nervous system. This was the most recent medication removed from his medical health plan, and due to using this CBD oil 20% he no longer requires this. He still has seizures, but not as often and usually when he’s ill or has a viral infection. He also hasn’t had to be admitted to the hospital once. I use 0.5 ml of CBD oil daily in-between his AEDs and when seizures are on their way, I use 1 ml. This calms his seizure almost immediately. If Vinnie isn’t wanting to take oil during a seizure, I have applied the oil to his temple area and judging by the glands on his neck this seemed to work too.
I’m sure this daily use has helped his body to become more balanced and stronger. His development as a child has been remarkable. He had regular speech and language therapy which was only needed for a few sessions. His balance and coordination seemed to heal remarkably, and he is in main line school learning with his age group. Vinnie remains on one epilepsy drug, which is to cover the brain in case of another bleed and to help balance his epilepsy. We are so happy that I discovered CBD, having the knowledge and understanding of how amazing this is and how it has worked for him.
My son’s behaviour, learning and appetite have also been improved since the use of CBD oil. After surgery, his right side had been damaged and weakened from the impact of the bleed and surgery, but I truly believe the CBD has helped his body recover from such trauma at such a young age. The CBD has taken down the inflammation in his body, and he is now able to tell me when he’s feeling a seizure on its way. This allows me to give him an extra dose that settles him down within minutes.
We are so thankful for CBD.