Today, is the 6 July 2009, it is hard to believe that our lives totally changed on the 4th February this year. From everything being rosy in the garden we ended the day in the Accident & Emergency department of the Royal Hospital for Sick Children in Edinburgh. Rebekah had suffered a massive seizure which last for over 1 hour. The next few hours were to be some of the longest hours we have ever experienced. Particularly when she came round and couldn't speak. We hoped and prayed that this would be temporary and it was. Rebekah came home and within an hour of being home it became very evident that everything was not what it should be. She was putting rubbish in the cutlery drawer and cutlery in the dustbin. She was falling off chairs for no reason and complaining that her head was sore. This resulted in her being re-admitted to hospital and it then became apparent that she had memory loss, she couldn't recognise several members of the family. She couldn't remember the names of her favourite characters from TV shows like Balamory and the story went on.
Over several months now Rebekah has been under a specialist team at Sick Kids and they have cared for her in an incredible way. We are so grateful to all the specialist staff who have helped us and her through these difficult days. Very quickly our consultant recognised through the first lot of brain scans that were done that Rebekah was suffering from a very rare form of epilepsy. She had been diagnosed with Epilepsy Aphasia and they informed us that they were now working on which syndrome of Epilepsy aphasia that she was suffering from. Our consultant informed us that the worst case scenario was that Rebekah would lose her speech and development. If she did lose her speech then this loss would be permanent. By this stage Rebekah speech was becoming slurred and she was suffering what is called word finding difficulties. She could recognise what things were but called them different names but didn't realise that she was giving them the wrong names.
Rebekah was put on to anti convulsent drugs and after the third brain scan the consultant decided that she should be put on steroids. However, there was a problem. Since the seizure Rebekah had been suffering from very high temperatures and the consultant was not happy to proceed with the steroids as long she didn't know what was wrong with Rebekah. After several attempts with other doctors to get a diagnosis the neurology team decided to do some further tests themselves and then brought in the Rheumatology team. As a result further tests were carried out which has shown up another condition called Sarcoidosis. This is a very rare condition which is hardly ever found in small children of Rebekah's age. Tests are on going with this condition now to try and find a link between it and the epilepsy.
Rebekah over the past five months has now gone through 2 MRI's (one of the brain and one of the full body). 8 EEG (Brain scans), chest x-ray, kidney & isotope scans, blood tests too numerous to mention. She has been seen by the Speech and Language therapy teams both at Sick Kids and St John's.
Rebekah a week ago completed a twelve week course of high dose steroid and we now await the latest brain scan which has been arranged for the 15th and 16th of July which will be a 24 hour scan under video surveillance. In addition Rebekah has an appointment with the Ophthalmologist at St John's, on the 14th, in an effort to find a link between the sarcoidosis and the epilepsy.
Our hope and prayer is that come the scan in July, that the treatment of the epilepsy will have worked and that we can start to see continuous improvements in Rebekah over the coming days. The past couple of weeks certainly have shown a lot of signs of improvement, however, there have also been signs of a fair number of the symptoms that she had before she went on the steroids returning. At the moment we are just trusting God that he will continue to look after us all and continue to help us through these difficult days.
