LUKE’S STORY SO FAR

 In the 1990’s I worked with adults who had an intellectual disability living in the community, many of them also had Autism or Epilepsy. I loved my job but never thought that I would have a child with a disability myself. In early 1998, my life changed completely when I became a parent of premature twins, a boy and girl.  People always say to me “I’d love to have twins”. Having twins isn’t glamorous, just hard work. There’s a lot to learn when you become a new parent, especially a parent of multiples and a child with special needs. 

The children spent their first nine weeks in hospital. They weighed just over 1000 grams each. That’s three oranges and an apple, or two tubs of butter!

Our daughter Ruby was fine but Luke was very sick.  We asked the specialist whether he had Cerebral Palsy as his fingers were curled under and his body seemed quite rigid, but they thought not. Before he left the hospital Luke had 13 different drugs, 2 blood transfusions, and oxygen for 8 weeks. Believe it or not that’s quite good for a premmie! Although he did end up with scarred lungs which eventually led to asthma. We had seen others lose their babies over the weeks in hospital so we considered ourselves very lucky to take our two babies home. 

Not a lot of sleep was had that first three months, our son screamed constantly, and at 5 months his eyes crossed and he couldn’t lift his head up, so he started physio, occupational therapy and speech therapy at the Mater Children’s Hospital. At 10 months Luke had three seizures and went for an EEG. Nothing was found and he didn’t have any more seizures. Or so we thought. 

Finally at around 12 months our son was diagnosed with Cerebral Palsy, at last! It was almost a relief to be told. Again he had started to scream and cry a lot sometimes it was from frustration as he couldn’t physically do anything for himself. He was sick all the time with respiratory viruses and urinary tract infections. There were three lots of eye surgery, various other treatments for his eyes, plus grommet surgery for ear infections (and still attending therapy). 

By chance one day, watching a current affair show I came across a special school for children with physical impairment. The school (an annexe of Whiteshill College in Brisbane) uses Conductive Education to teach children to move independently. Luke started at the age of 18 months and stayed until approximately the age of three, attending three mornings a week. During this time he resisted the program although he did learn a lot and “walked” at the age of two (although he now walks well he still requires a stroller for long distances). Despite his success Luke’s behaviour was going from bad to worse and everyday could be very different!  Sometimes he would seem almost like any other child, but most days he just wasn’t there!  The school recommended seeing a Developmental Paediatrician to investigate Autism.   We went back to the hospital and saw a Developmental Paediatrician in a clinic that specialises in diagnosing children like Luke. We also had genetic testing and a Magnetic Resonance Imaging scan of Luke’s brain. It was found that Luke’s problems were not caused by his prematurity. He had a slightly smaller Cerebellum (part of the brain involved in motor and sensory issues), and Autistic tendencies.  At this stage nobody thought that Luke had Epilepsy, and neither did I as he wasn’t having any seizures and another EEG had come back normal.  During this time Luke spent a lot of time running, crying, and falling down. His speech came and went, he had quite a few words at one stage, and he could even say Bob the Builder. 

One day around the time Luke turned three, I heard him crying and thought he’d fallen over as usual. When I picked him up he couldn’t walk or stand, his legs were like spaghetti. The next day he was even worse and saw a GP. Later that day he was tremoring badly and we took matters into our own hands and called for a Neurology appointment. (I don’t know why I didn’t take him to the hospital I think I’d had a couple of bad experiences with Emergency department doctors and waiting times).  By the time we saw the Paediatric Neurologist Luke had had a couple of obvious partial seizures, and that night had ten in a row. We realised by then that our son had Epilepsy, something I never thought he would have as his Cerebral Palsy is quite mild. However 50% of children with Cerebral Palsy have Epilepsy and it’s even more common in those with an intellectual impairment. 

That was the start of anti-convulsant drugs. Luke has had quite a few drugs in the last three year. Tegretol was the first but his condition worsened, until one day he became blue and unconscious in the car. Then he started Topiramate and it was like a miracle drug for Luke. His fine motor skills and co-ordination improved out of sight. He even appeared to be seizure free! Within a couple of months he could eat with a spoon independently (something I’d been trying to teach him for two and a half years with little success). After some very stressful and confusing times I felt happy and hopeful again. Until yet another diagnosis; the results of an overnight video EEG showed constant seizures one after another all night. The tricky thing was you couldn’t see the seizures, they were non-convulsive. 

I think this was one of the worst moments for me, because even after a diagnosis of Cerebral Palsy, Autism and Epilepsy, I still had hope. Things seemed to be improving for Luke all round, he could walk and was gaining some independence.  However, after the EEG I realised that the seizures were not going to go away and Luke would never speak again. I guess it was one diagnosis too many. I became quite depressed some times which isn’t unusual in parents who have a child with special needs of any type. I tried five types of anti-depressants (not all together!) and none of them agreed with me. So now I rely on yoga and support groups.  After six years I feel that I have really accepted Luke the way he is and if other problems come his way I will accept them as well. 

The kind of seizure pattern Luke has is called Electrical Status Epilepticus during Sleep (ESES). ESES is diagnosed by an overnight EEG when 85% of non-REM sleep is affected and 25% of awake time is affected. It causes cognitive and language impairment and sudden loss of speech, behaviour problems, developmental regression, decreased attention span, hyperactivity and sometimes psychotic behaviour. Our son is very hyperactive. He never sits for more than a few minutes at a time. He has lost all of his speech. Some children with ESES or similar conditions can speak again with treatment so it is important to catch them early enough. Personally, I would like to see more education in this area (non-convulsive seizures and loss of speech) for anyone involved with children with special needs. Unfortunately Luke has not regained his speech, although there is sometimes a single word in isolation (rarely). However we do see a strange phenomenon when Luke has a general anaesthetic. He becomes very calm and behaves almost like his sister. He will sit for hours playing productively and “reading” books. He also starts to speak again. Unfortunately this only lasts just over a week and slowly he disappears into chaos again. 

Our young man is now 6, and has had all types of seizures. Last year was the year for drop seizures. Dilantin has fixed that problem for the moment. Last year Luke also received another diagnosis of Visual Impairment, and was Ascertained at school as level 6 Intellectual Impairment, Level 5 Physical Impairment and Visual Impairment. Levels are graded from 1-6, level 6 means the child attracts the highest level of educational support. (i.e. funding). Having more than one impairment means that Luke attends a special school coded for Multiple Impairment. He attends only two and a half days a week, as he becomes overtired easily. On the other days he has a home program based on Applied Behavioural Analysis (ABA). ABA teaches concepts by breaking them down into small steps. The program was set up by a psychologist. There are also two teachers and two carers involved in the program. 

One of the problems we have encountered when teaching Luke is the involvement of his anti-convulsant medication. We have found it is better to teach Luke early in the morning before his medication is given. The difference is quite remarkable. Luke’s ABA teacher has commented that his concentration goes out the door and his reaction times slow down considerable after having the drugs. This isn’t surprising when you read about the side effects of the drugs, and take into account that these effects are more marked in people with CP and cognitive impairment. (By the way I’m not complaining about the drugs, we couldn’t live without them). 

Setting up a home program for your child is very worthwhile. Many parents whose children have a medical issue have to home school them as they miss out on so much. From Luke’s program we have been able to work out that Luke knows all his colours, shapes and can label most common items. He recognises the letters in his name and can put them in order. I believe it’s important to continue with the program for Luke’s future communication skills. I also believe his self-esteem has improved and he is happier. 

Having a complex child like Luke not only changes your life, but also places a lot of stress on parents and siblings. Our son needs everything done for him, he isn’t toilet trained, and needs to be watched constantly.  However having Luke has also taught me a lot about life. I certainly know a lot more about Epilepsy now than I did before. Luke gives back more than others would realise, he teaches us never to give up and saves on gym fees! 

Of all the issues Luke has had to contend with Epilepsy has been the most difficult. The seizure disorder Luke has seems to be of an unpredictable and cyclic nature, in my opinion. Although it has become more controlled Luke’s epilepsy affects him every day in some way.  

Although, having a child with a disability has been difficult to cope with at times, now I can’t imagine my life any other way. Through my son I have met some of the most amazing parents, children, teachers and other dedicated professionals, and have some of the most wonderful friends you could meet 

I know that there are other children in more difficult situations than Luke, so I am always grateful to get up in the morning to his cheeky, smiling face.

I think we can all cope with Epilepsy, and another disability, in our families if we have enough support from the relevant government departments, respite organisations, support groups, therapists, special schools or supportive mainstream schools. Above all we must have understanding supportive doctors, family and friends. 

Epilepsy affects more lives than our child’s, but if we have support and education I hope that we can all “step out of the shadows”.