Hope for Hannah...

For a long time before she was born our hopes and dreams were in place for our darling Hannah.

Sometimes life doesn’t allow these plans to be fulfilled easily.

Hannah has indeed experienced a very rocky road since she received her first immunization at 2 ½ months of age. It was after a night of whooping cough style coughing we found Hannah blue in her cot.

She was rushed to hospital where she began to seizure. An MRI revealed no cause.
My husband and I have a suspicion that Hannah had a neurological reaction to the immunization. This is something we’ll never know for certain. Doctors have told us that it may have been coincidental that the seizures began at that time.

Eighteen months later, Hannah’s seizures became worse. Night time screaming, jerking, and wakefulness with itching became a regular part of our lives.

Under the care of Hannah’s neurologist we began the drug merry-go-round of seemingly every epilepsy drug available on prescription and vitamin injections in combination with various drugs.

Our lives were ruled by our diary of adding and weaning drugs. Nothing seemed to work.

By the age of four Hannah deteriorated physically, intellectually, and her speech slurred. She was sent to Sydney to the Epilepsy Monitoring Unit for assessment. It was thought at that time that she may have had the debilitating Lennox Gastaut Syndrome.

We were devastated. We returned to Brisbane to begin a series of tests – muscle biopsies, rectal biopsies, MRI sleep studies and a myriad of other difficult investigations. No cause was found.

By this time Hannah had absence, focal and drop seizures. She needed a helmet, a walking belt, and spent most of the day on a mattress. She needed one on one supervision. We were not convinced she had Lennox Gastaut Syndrome.

Hannah quickly regained skills, but she battled high blood pressure and Cushings Syndrome as a result of the medication.

In June 1997 we saw a story on “A Current Affair” about a boy in Perth who had a Vagal Nerve Stimulator (VNS) implanted. It was quite a new procedure at that time. Initially our neurologist did not feel that Hannah was a candidate . We were told that the advantage of the VNS is its lack of central nervous system side effects (such as sedation and being off balance) commonly caused by anti epileptic drugs. When effective, the VNS allows the decrease and elimination of other drugs, which leads to a better quality of life for the patient and caregivers. It also seems to shorten the duration of seizures and the recovery time after a seizure occurs.

Unfortunately, VNS does not benefit everyone and there is no way to predict in advance who will benefit from its implantation. However we continued to pursue this as we wanted to give our little girl every opportunity of living some sort of a normal life.

Some four years later, in March 2001, the Vagal Nerve Stimulator was implanted. Well the rest is all good news.

Hannah is now 13. She has had the Vagal Nerve Stimulator for 4 years. She has regained her physical mobility. She has a sight vocabulary of 65 words and she is probably functioning at grade 1 level. She is independent for just about everything. She plays computer games, has a memory that is unbelievable, loves shopping, and is loved by so many.

She has even started to show signs of teenage rebellion! Hannah occasionally has absence seizures. Throughout the stresses and worries many have helped us to arrive at the place we are now.

Epilepsy Queensland is made up of a special group of people who have provided us with advice, information , and support. We have attended and been part of various programs and seminars they have had on offer. Hannah has been a member of the Little Poss Club and we always looked forward to our monthly newsletter especially tailored for children with epilepsy.

Together with the support of Epilepsy Queensland, the medical staff involved with Hannah, and our dear friends and family we feel that we are now able to move on with our lives and help Hannah achieve her full potential.