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A move for the better
Helen Forno and her five year old daughter, Rosalie, are hoping they might get to visit their family in Queensland for Christmas. They spent last Christmas alone in Melbourne because Rosalie’s condition was unstable, and after moving from Queensland that same year, the money for air tickets didn’t stretch far enough. Life for families with epilepsy is a constant tale of compromises.
Helen and Rosalie are one of the many families who live with the unpredictability and uncertainty of epilepsy. Rosalie has been diagnosed with Myoclonic Astatic Epilepsy or AME. This particular type of epilepsy is sometimes called Doose Syndrome, named after the pediatrician who identified the characteristics of this difficult form of epilepsy.
AME is often resistant to usual epilepsy medication, and occurs generally in children under five. In Rosalie, it means she has atopic drop seizures, myoclonic and absence seizures, and is particularly photosensitive to light, even electronic games, which can trigger seizures.
Rosalie was diagnosed with epilepsy at two years of age. Helen has no doubt that the seizure activity probably started when Rosalie was a tiny baby, but her condition went unrecognized and misunderstood for at least 18 months of her life.
“I first noticed at two weeks of age that there seemed to be something wrong with Rosalie. She jerked a lot, and didn’t seem to have normal eye contact. By 10 months of age, Rosie was experiencing more pronounced absence seizures. Her eyes would roll, her head would nod and she was also having drop seizures by that age as well. At 12 months of age, she was experiencing myoclonic jerks. But even then, I was advised by the GP to leave it until she was age two to see what was happening then.
“At 18 months old, Rosalie’s condition had become really bad. She couldn’t walk anywhere, or even look at the television without experiencing a drop seizure”.
At the time, Helen was living in the regional city of Townsville in Queensland where specialist knowledge of the type Helen needed was not readily available. Doctors were diagnosing anything from ear infections to viruses and silent reflux, but Rosalie was getting no better.
As the months went by, Helen became increasingly concerned about Rosalie’s condition.
“Rosalie was falling way behind babies of her own age. She was delayed with her walking and talking; she was always unsettled; and she wasn’t sleeping. My mother who has seven children of her own and 13 grandchildren became as worried about Rosalie as me. That’s when I really knew I had to stand on my soap box and get specialist attention for Rosalie!”
“I knew there was something really wrong; I just had to follow my instincts and insist on seeing a specialist”.
It was another four months before Helen could get to see a pediatrician and then a further wait to get an electroencephalogram (EEG) done. By then Rosalie was experiencing up to 200 seizures a day. It was becoming obvious to everyone, even the radiographer who did the EEG, that Rosalie was experiencing frequent seizures.
“By age two, Rosalie was six to 12 months behind most children of her age. Her weight was low, she was experiencing great difficulty eating because of the seizures, her motor skills and learning capabilities were all delayed, and she was not sleeping any more than a few hours at a time. “
Helen found herself not only caring for a seriously ill child but also having to make decisions about her own employment and the future for herself and Rosalie.
Helen had served in the Australian defence forces for 18½ years including a tour of duty overseas in the Middle East. At the end of her maternity leave, Helen planned to return to her career. But when Rosalie’s condition was not improving and the medical services she needed could not be provided in her home town, Helen was faced with difficult decisions.
“I applied for and was granted a ‘compassionate posting’ to Brisbane, so I could be closer to my family for support, and to get better specialist care for Rosalie. Having already done a tour of duty to Iraq, I was aware that another tour was a possibility. I had to face the fact that looking after Rosalie was a lot of work; she just needed constant care.”
Helen and Rosalie moved to Brisbane where her paediatric neurologist, in consultation with a highly regarded paediatric epilepsy specialist in Melbourne, Prof. Ingrid Scheffer, diagnosed the severity of Rosalie’s condition as AME. Rosalie was also tested by the paediatric neurologist which showed that a rare genetic condition was causing her epilepsy. Meanwhile none of the medication was helping to reduce the severity and frequency of Rosalie’s epilepsy.
The option to travel to Melbourne for regular specialist consultations was not viable. Helen could neither afford trips to Melbourne each few months, nor could Rosalie deal with constant travelling and disruption to her routine which exacerbated her seizure activity.
So Helen made two decisions: to resign her position with the defence force to care full-time for Rosalie, and to relocate to Melbourne in an attempt to get better medical services and support for her.
“We arrived in Melbourne in February 2009. Rosalie’s condition was still very bad but I felt at least that she had begun to get the care that would help her. The Epilepsy Foundation was a big part of that. The waitlist to see Ingrid Scheffer (a specialist epilepsy paediatrician) was 12 months. But Jean Ewing spoke to Professor Scheffer and made arrangements for the professor to see us. Without this help I don’t know who I would have turned to. I didn’t know anyone in Melbourne and found myself in a very overwhelming position. We were on the right track.”
Helen attended an Epilepsy Foundation seminar on epilepsy in childhood, and has used the information and library services provided by the Foundation. The Foundation’s Education Services professionals were also able to help explain epilepsy and its management to child care workers in a centre that Rosalie was attending.
“I was able to get Rosalie into family day care for two days but the staff had no experience in dealing with a child with epilepsy. The Foundation helped me with that, and then a short time later, I had a follow up call from Jean (the Foundation’s Services Manager and counselor) to see if there was anything else that might help”.
While the move to Melbourne was a difficult transition, it turned out to be a turning point for Rosalie. In a short time, Rosalie had had two EEGs; she was receiving appropriate medical care; her specialist was closely monitoring her medication in an attempt to get the right one to suit Rosalie. Helen also was able to get some respite care, and some help around the home, and she has the support of the Foundation if she needs it.
2010 has brought some milestones for Rosalie and Helen that are beginning to make a difference to both their lives. After seven different types of medication Rosalie’s condition has responded to a medication that suits Rosalie. “We were able to teach her how to swallow a capsule and it’s really been a break-through. As soon as she could swallow, Rosalie has had no problems at all with taking medication”,says Helen.
“I see such a difference in Rosie on some days. She had her first ever party for her fifth birthday and even though her activity levels can still be low, she is just so happy…she’s a real little fighter. It is the little things that Rosalie achieves that are so joyous: colouring within the lines; recognizing numbers, sleeping through the night. I thought even just months ago that I would never see her do any of those things.
Helen has been taking Rosalie to a sleep therapist in an effort to develop better sleep patterns for Rosalie. “When Rosie was first born, she never slept more than one hour. Over time, she improved and would sleep maybe four hours at a time. But she has never slept through the night until about four to six weeks ago, when she slept right through. She’s been doing that about three nights out of seven. I have to admit I still sleep with one eye open but it’s a big milestone for Rosie”.
Rosalie is now at an age where she could start school next year, but Helen has decided it would be more advantageous for her to have another kindergarten year. “She’s not ready for school, so another year of kindergarten will be good for her. Practical things like going to the toilet are still things she’s catching up with”, says Helen.
The past five years have been momentous ones for Helen and Rosalie and there have been many decisions to be made. For Helen it has meant leaving the support of her family, making decisions about her career, moving interstate away from family support and accepting that in doing so, there would be considerable financial stresses to give Rosalie the best medical care and support, and hope for the future.
When you ask Helen what lessons from her experience she could pass on to others, she thinks carefully. “As parents of a child with epilepsy, we have to keep reminding ourselves, that we do have children with challenges. But other people have been through similar things and have conquered it”.
Secondly, Helen would advise parents to trust their instincts and insist that further investigation or testing be done, if they have any concerns about their children’s health. “Doctors might see your child for 15 or 20 minutes; you live with your child, 24 hours a day, so it’s more than likely you will know better.”
And thirdly, Helen would like to remind the community that epilepsy is not contagious. “Rosalie was denied the opportunity to join in with swimming classes because of the fear of a seizure in the water. Well, anyone can have a seizure, not just children who have been diagnosed with epilepsy”.
What for the future for Rosalie? Helen has wishes no different from any other parent. “Just for her to do whatever she would like to do in life…and that she is healthy and happy.”
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