Tomas was born at 10:50am on Monday the 24th of January 2005. Following birth he had breathing problems and on Wednesday 9th February Tomas had his first seizure/infantile spasm. The results of an Electroencephalograph (EEG) showed hypsarrhythmia (the output from the EGG showed totally disorganised brainwaves, like someone had scribbled irratically on a peice of paper). Tomas was subsequently diagnosed with West Syndrome (a severe form of childrens epilepsy that is difficult to control).
He was given Phenobarbital medication (an anti epileptic drug) to control the seizures and this seemed to control the condition until he was around six months old. He then began having frequent seizures in the form of multiple groups of infantile spasms (sometimes 40 or more per day). Each infantile spasm involved a stiffening of his arms and legs and was evidence of further abnormal brain wave activity. (Seizures occur as a result of a burst of disorganised electrical brainwave activity that interferes with normal brain functioning).
Tomas was admitted to hospital and over the course of about 4 weeks the doctors and nurses struggled to control his seizures. He was given increasing doses of Vigabatrin which eventually controlled the seizures and we were able to take him home.
After about 18 months and no signs of further seizures we began to reduce the medication slowly until he was medication free and he remained without medication and seizure free for about 3 years.
Nearing his 6th birthday Tomas began having seizures once again. This was a huge upset for us as we had hoped that this was one area of his disability that we no longer had to worry about and the worse part of it all was that the seizures were longer (up to 20 minutes long) and he was therefore at risk of status epilepticus (extended seizures that were more likely to cause further brain damage). Another problem was that the seizures did not involve movement and just involved motionless absences, where Tomas remained conscious but unaware of what was going on around him. This meant that they were more difficult to detect we were not close to him at the time and we therefore had to be much more vidgelent in watching him especially during and around sleep when the seizures tended to happen.
Tomas was again admitted to hospital and began treatment with Oxycarbamazepine. Once confident that the seizures were once again under control we were again allowed home to continue his treatment. We also permanently carry Diazepam, emergency medication the try and bring him out of a seizure should he need it. Tomas also has to have regular EEG monitoring to check his brainwave activity. To date there have been no further instances of seizures, but it is early days and we remain vidgelent but hopeful that his epilepsy will continue to remain under control without the risk of further brain damage.