The diagnosis at first was scary for us as parents, as well as for his three older siblings. It has often been a tough journey we have all travelled with Dan, and looking back now there are a number of things I have learned along the way, that may be helpful to other parents.

Firstly, its really important- and not always easy- to get the correct diagnosis for what your child has- is it epilepsy or is it something else? Is it epilepsyAND something else. If it IS epilepsy- what kind of epilepsy is it? I understand now there are many different types of seizures, and many different epileptic syndromes.

Frequently children like Dan, who have autism or cerebral palsy, or intellectual disability, also have some form of epilepsy. Once you know what sort of seizures or syndrome your child has, it is sometimes easier to manage, as some medications seem to work better with particular seizure types.

Secondly, get the best possible medical support you can. We live in a country area, so had to travel to Brisbane to find an appropriate specialist, once we realised Dan had one of the more difficult, or complex types of epilepsy. You also need a good GP- one you trust, who listens to you and your concerns, and takes the time to get to know you and your child. Recently Dan needed an MRI, and that meant he may need an anaesthetic to make him keep still while it was being done, which we didn’t really want. However we got a wonderful doctor, who was kind and patient, and sat down with Dan and talked with him.

He said “Dan, I think you can do this, without anaesthetic, I will help you to be really calm and still, we can do it together.” And Dan was able to do it, because he trusted the doctor. Other doctors may not have been as patient.

Be aware of what triggers your child’s seizures- and this may change over time. With Dan, we find lack of sleep, chocolate, and foods with a lot of sugar in seem to make them worse. Puberty and growth spurts also seem to have been a time when we have seen more seizures. Dan has tried numerous epilepsy medications, but is now on Lamotrigine, and Zarontin- Zarontin is for his absence seizures.

I was the parent who took Dan to the doctors mostly, and talked with them, but then my husband also got involved in Dan’s care more, and that was a good thing, as he had more understanding of what was going on. I also got a lot of information and support from Epilepsy Queensland, and found Carer’s Queensland a wonderful help also.

In recent years, Dan had been bullied a lot by other kids at school, so his self esteem and confidence has suffered. We got some counselling for him, to help him with the bullying issue, and things are somewhat better now. Dan goes to a school with a Special Education Unit, and we are so proud of him, he was recently given an encouragement award. He is a good advocate for other kids who have epilepsy.