Saturday 24th October 2009

As a family we have just returned from a week's holiday together which was a great opportunity to get away and recharge the batteries after the last few months activities. Over the past week though it has been pretty difficult with Rebekah as she has continued to decline in many ways. Having said that we have made the most of the time we have had and enjoyed many happy times together in the swimming pool and on the beach.

Last night as we sat having our meal together the mobile phone rang and it was the Epilepsy consultant from Sick Kids to give us details of the results of her latest brain scan. Sadly, Rebekah's condition has deteriorated and they are keen to get her back on to steroid treatment as soon as possible, along with another drug. The other purpose for the call was to tell us that they have had a meeting to discuss Rebekah's case on Thursday past and they have arranged an emergency MRI scan of her brain and a CT scan of her chest, both of these will be done under a General Anaesthetic on Wednesday coming. This is now needed to help them with the Sarcoid diagnosis but also as they are wondering again whether she has Neuro Sarcoid which is very serious in a child of Rebekah's age. There is currently research out there suggesting that this form of Sarcoid can cause very rare forms of epilepsy and Rebekah's one is listed as one of them.


We obviously, want what is best for Rebekah and would ask that you help us by continuing to pray for her and for us as we deal with the daily struggles that this brings upon our family at this present time.


Thanks again for your support of us.


Jonathan, Jillian, Abigail, Rebekah and David.

Thursday 8 October 2009

Today, as we had previously indicated we needed to take Rebekah back to Sick Children's hospital in Edinburgh to have another EEG brain scan performed over 24 hours. She has come home tonight with the computer and all the leads attached to her head and will return to sick kids tomorrow morning to have it removed. We are unsure at this stage when we will get the results of this scan.

In addition, Rebekah has seen two rheumatology consultants today regarding the other condition that she is suffering from and you may recall that we stated that the consultant was not prepared to confirm sarcoidosis and was running further tests. Today, the consultant has stated that the most likely condition that Rebekah has is sarcoidosis. She has ordered a CT scan of her chest today and is considering a further MRI of the brain. The consultants both said that following a discussion with the epilepsy consultant they may decide to commence further steroid treatment and to add an anti inflamatory medicine in with the steroids. This obviously, is a very big step for them and for us and would be for a period of at least 1 year.

Please continue to pray for wisdom as we await the further scans and advice from the consultants.

Jonathan, Jillian, Abigail, Rebekah and David.