Ms Vera Twomey:

The reason we went down that road of the CBD was based on research that started initially with Paige Figi and her daughter Charlotte. That child was getting over 300 seizures a day and after the Stanley brothers produced the oil for Charlotte her seizure count went down to three or four a month. Now that little girl is nine years old and she is doing very well. She is doing regular things like riding her bike and playing games.

In some respects there is an absence of reports but there are good reports, including one done by Professor Mike Barnes which is a very important document to read and take notice of because he covers not only epilepsy and the Dravet syndrome but multiple sclerosis, cancer and many other ailments that are helped by CBD in combination with THC. There are reports from Israel as well that are very promising and that information is available.

Deputy Kelleher asked who mentioned the different products to us. We did have a conversation with a consultant about a company called Bedrocan in Holland and that is one avenue that seems promising. The company is well researched and its products are made according to manufacturing guidelines. I suppose the evidence is limited. When we went down the CBD route a lot of our research was coming from families but they were families like us that were struggling and that had gone through 11 and 12 different medications and were left with no alternative. We went down the CBD route because as Dr. Doherty said, from the time Ava was four months old we were told that she could pass away from her seizures at any time. She could go into a seizure that could last 30 minutes or two or three hours. One never knows. She might not come out of a seizure and she would be gone from us. When one is put in that situation, in spite of the fact that there might not be a vast amount of information there, when one speaks to families, and when one looks into the issue and does careful research, although the evidence was anecdotal we took it very seriously. The other families were in the same position as we were.

Reference was made to medication and the side effects of CBD. At present, what I have noticed in terms of side effects with Ava on CBD is an increased appetite, which we could badly do with so that she could put on a little bit of weight, better sleep, and a better stance and gait. She has more words coming and she is doing better at school. I genuinely cannot point to a negative. If there was I would tell the committee but from what we have seen there is not. We cannot say in the long term how things will be, but the risk for our daughter who had over 20 seizures in a 24-hour period is so serious that it is a real balancing act. Trying CBD for Ava has been the best thing we have done so far for her.

Deputy Smith asked about the side effects of other medications. We have been on 11 different medications. I wrote down the names earlier. Frisium was one of the medications we were on and it caused problems with Ava's balance. She was on another drug, Rivatril, which is a benzodiazepine. It is a little like a sleeping tablet so one can get quite addicted to that. Ava was on Rivatril previously and came off it. It took over 12 months for us to wean her off it because it is so potent one has to reduce it by the tiniest degree, three or four weeks at a time. It takes a long time to come down off it the drug is so addictive.

Topamax is another drug which caused significant speech delay for Ava. We were working really hard to help her with her speech and while the Topamax was helping at the time to control her seizures we did not realise until afterwards that it was affecting her speech. The efforts we were making were being hampered by the medication she was on to stop her seizures.

Keppra is another medication that Ava is on at the moment. Fortunately for us she is not on a huge dose of Keppra but patients that are on a high dose sometimes encounter an effect known as "Keppra rage" where people get very upset, emotional and angry. It is hard to calm such a person down and that is proven to be associated with Keppra. Thankfully, we have not experienced that ourselves but Ava was on another drug which was brought in for her from England when she was about two and a half called Stiripentol. That has been shown to be of significant benefit to a lot of people with Dravet syndrome.

Unfortunately for us, however, Ava was in a coma for a week having been on the medication and subsequently lost the ability to walk when she was approximately two and a half years of age. There are drugs that are available but which have had a very negative effect on us.

As Dr. Doherty mentioned, we are always watching. Even though things are now going well, it is difficult to relax and get used to Ava not having seizures. That is very new for us in the past six weeks or so. She has to be monitored all the time and we have to take great care because there is a serious risk that she will pass away from a seizure. I cannot recall the exact date, but she had a bad seizure at or about the beginning of November and I believe firmly we could have been in serious trouble. The seizure was violent and its power rose her high off the bed. It took her and she lay down; it took her again and she fell. Anyone who has seen an epileptic seizure will understand what I am saying. Had we not had the break in October, when she had just seven seizures, we would have been in real danger of losing our daughter. The cannabidiol, CBD, helped her to fight off the seizure she had at the beginning of November and she is still with us.