Wednesday 3rd Nov 2010

Hi everyone,



Thank you for your prayers for this afternoon's appointment with our 2 Specialist Consultants (1-Rheumatology and 2-Neurology) at RHSC. At the moment they are not prepared to reduce Rebekah's steroids further till they repeat an EEG scan. They are hoping this can be done within the next 2 weeks as an ambulatory scan as opposed to being an in-patient. This not only is quicker to get an appointment but also it allows Rebekah to come home with it. Therefore it will be a further 3/4 weeks before we get any results at the earliest.



It is hard to take in that Rebekah has been on this lot of steroids for a year now. Having hoped that by now she would be on the dose the Cons's are happy for her to be on (5mg), it is now looking for sure that she will be on them for a further year at least! Remember they were hoping away back last year to get her down to 5mg Prednisolone and keep her on that dose for 1 year! It is just another reminder that Rebekah's illness is here for the long term and we need to learn how to cope with increasing demands and how that impacts us as a family unit.



She really is an incredible girl though. It was hard for Jonathan & I to watch her today as the Phlebotomist took a "huge" syringe of blood from her to fill all the little containers the Cons's requested! She jumped up on the couch and lay back, stuck her arm out and waited for the Nurse to start! The student watching was amazed. At one point even Rebekah was saying to the Nurse to hurry up as she was bored with it all!!!



With regards to all the behavioural issues and sleep depravation/disturbance issue we are going to be referred to the Epilepsy Scotland and Sleep Scotland groups for help.

Tomorrow am we have a meeting with the Educational Psychologist at the School. We are grateful to the Head/Deputy Head Teachers and all the staff at Williamston Primary for their care of Rebekah. This input has been requested by our neurology Cons at RHSC. We would value prayers for this meeting as ever.

We continue to lay ourselves before our Lord for patience, support, comfort and the knowledge that we are in his hands.



Two verses that have supported us a lot as a couple/family/and individual's are Jer 29:11 and Isaiah 40:31.



Thank you to you all for your continued interest, prayer, support and friendship in our journey.

Tuesday 2nd November

Just a quick update today on Rebekah. We have a meeting tomorrow with Dr Ailsa McLelland (neuro cons) and Dr Davidson (connective tissue cons) at RHSC in Edinburgh at 2pm. Please pray for us all as we attend this appointment. Rebekah is now on 8mg Prednisolone as well as all the other medication she is on. She is also taking 50mg Azathioprine and 15ml of Clobazam every day. In fact she now has a competition with her Mum to see who can take their tablets the quickest! We are blessed by the fact that she is so good at taking them all. Good old Irn Bru comes in handy!! In some ways there has been an improvement in this last month with her reduced steroid intake but in other ways there has been no change. Her behaviour and mood swings have been quite horrendous and challenging for us as parents and her siblings. In fact if you read over the last blogs this has been a constant problem from the outset. In recent days there have been a few outbursts in a public setting which have been quite alarming in nature. This is due partly to meds but also can be attributed to her illness. She continues to be at school and is doing well. We have a meeting on Thursday am with an educational psychologist so please remember us for that.

Prayer Points:

Wed 3rd Nov Meeting with cons's at RHSC
Thurs 4th Nov Meeting with Educational Psychologist at School
Behavioural issues and Mood swings
For Abigail and David
For Mum and Dad

We will update you in the next few days as to outcome of these meetings.

Thank you for your continued prayers and support

Tuesday 27 July 2010

At present, Jillian and the children are away on holiday for a few days with family friends in Northampton. We are grateful for Bill and Elizabeth's willingness to have them with them for the next few days. I have now arrived back in Livingston to find a message from Rebekah's consultant on our answerphone.

The latest tests that were carried out have come back with positive news and as a result following a consultation between the Rheumatology team and Neurology Consultant they have decided to start the reduction process of her steroids. From next week we will reduce her dose by 1mg. This will be a very slow gradual reduction as the Consultants believe that they need to take it very slowly indeed. So once she has been on this dose for a month we will have a further discussion with them to ascertain as to whether we can reduce the steroids further.

This is a very important milestone as we need to find out whether her condition which has been medicated to date flares back up as the dose of medication given is reduced.

Thank you all once again for your continued prayer support for Rebekah and the rest of the family.

Jonathan, Jillian, Abigail, Rebekah & David.

Tuesday 15 June

Just had a call this evening from the Consultant at Sick Kids to inform us of the blood test results. Unfortunately, the results are mixed, on the one hand the test that they have been using a lot to watch the progress on her Sarcoid was stable but they are very concerned with her kidney function and have said that she is now to undergo some further tests.

The consultant was making contact with Paediatrics Consultant here in Livingston to arrange for her to be seen at the local hospital in order to repeat all of her bloods and also to be examined by the Paediatrician, depending on the examination we may need to take her across to the Sick Children's hospital to meet with the Rheumatology consultants.

Rebekah has been complaining of joint pain in her legs and also the temperatures have started back up. Both are concerns for the Consultants at this time and therefore due to this and the latest blood results they will maintain her medication at the present level until they get the results of the next lot of tests.

We give thanks for the stability that Rebekah has had over these past weeks but would also ask you to continue to pray for her as we start going through yet further tests that she will co-operate and allow them to do the blood tests without any fights.

Wednesday 19th May 2010

Dear All

Thank you once again for all your prayers for Rebekah over the past few months. These past few weeks Rebekah has been doing a lot better and this has now been born out today at the Consultants appointment. Her latest brain scans are in the words of the Consultant "very good indeed" and her bloods were the only place that they were slightly concerned about today. They have repeated her blood tests and decided not to repeat the brain scan for three/four months unless there is a deterioration in the short term.

Once the results of today's blood tests are known the Consultants will decide between them whether they should commence the reduction of her steroids. They will want to monitor this closely to ensure that there is no deterioration in her health in the mean time.

The Consultants have said today that they are very conscious that the condition is medicated at the moment and they need to find the level of medication that Rebekah needs to be on to remain in a stable state. What they have said is that the current doses of medication that she is on is still double what they are happy to have her on long term so ideally if the bloods are ok today then they will want to try and reduce over the coming weeks her medication by half.

We continue to appreciate all the prayers of folks in various parts of the country and around the world for Rebekah and ask that you continue to uphold her in these days that we may continue to see improvement day by day.

It has been great these past weeks to see how well Rebekah has been doing with her school work and also to see how her speech has come on leaps and bounds. It has also been good from a family point of view that Rebekah has had this period of stability which has meant our loyalties haven't been split between the children as much as it has been at times over the past eighteen months which has been great.

In addition to the above it has been good to see Jillian coping much better. We are in the process of arranging for Jillian to take a career break to enable all the different appointments to take place without interfering with work.

Thank you all once again.

Jonathan, Jillian, Abigail, Rebekah and David

Tuesday 18th May 2010

First of all apologies for not updating this sooner. I will post a more detailed update tomorrow but just to let you know that Rebekah's condition over the past few weeks has been pretty stable. I have been out of the country for about 5 1/2 weeks hence the news blackout as I have been catching up with my backlog since I got back.

Tomorrow, we will meet with the consultants at Sick Kids which we hope will be a very positive meeting and one where we may see some reduction to her medication provided they are satsified with her progress and that the latest brain scans are in order.

So tomorrow when I get back I will provide a more upto date picture but in the meantime thank you very much for your continued prayers for us.

Wednesday 24th February 2010

Thank you once again for your continued prayers for Rebekah.

Just a quick update on the appointments with the consultants at sick kids. The meeting went well, the consultants believe the medication is working. They are still not 100% certain on the diagnosis but now believe very strongly that the epilepsy is a lot more linked to her inflammatory condition than it being a totally separate condition.

They have agreed that she would remain on the same level of medication as she is now for the next three months and we will be seen by two of the Consultants again on the 19th May. The brain scans and blood tests will be repeated again in four to six weeks time.

In three months' time if there has been relative stability they will start to reduce her medication, they still feel the level she is on just now is still too high for the longer term and would like to get it down to half the current dose at least.

We are very grateful for all the support we have received over the past number of months and would ask you to continue to stand with us through these difficult days.

6 February 2010

First of all our apologies for the delay in publishing this blog. January has been an exceptionally busy month for me personally and has had several additional challenges for us apart from the daily issues faced with Rebekah's situation.


It is hard for us to believe that we have just had the first anniversary of Rebekah's initial seizure. When we last wrote Rebekah was going for a further brain scan and was on very high dose steroid treatment along with an immuno suppressent drug and anti convulsion medication. You will recall that we were unsure whether or not the medication was working and that the consultant was concerned, as a lot of Rebekah's symptoms hadn't settled down in the same way as the previous time that she had the treatment. A number of weeks have now elapsed since and the consultant has eventually come back to us to confirm that the medication is in fact working. This is an enormous answer to prayer which we are exceptionally grateful for. The consultant now believes that the symptoms we are experiencing with Rebekah and the behavioural issues that we have at different points in time are in the main due to an adverse reaction to the medication. Also, we are told it is possible to have what appears to be an epileptic absence with no epileptic discharge taking place.


We continue to take Rebekah to the throne of grace and believe that God will heal her permanently. For Jillian and I to know that the medication is working is one thing but we have already been at this juncture before and within six weeks of being told that things were much better she was back to square one. Please pray with us that this improvement will continue.


As Rebekah's steroid treatment has been reducing over these past weeks various difficulties have hit us along the way mainly in the area of exceptionally challenging behaviour. The problem then becomes exascerbated by the fact that she has a little brother who dotes on his big sister and thinks anything Rebekah can do I can do 100 times better. Thankfully as the medication has been reducing each week we see improvements in Rebekah's behaviour.


On the 24th February we are due to have a joint consultant appointment at Sick Kids in Edinburgh. This will involve the rheumatology team and the epilepsy team and we will wait to see where we go with the medication after this meeting. It is quite a thought that we will meet with four consultants at the same time which makes us all the more appreciative of the care and attention that the Drs at the hospital give to our daughter but also confirms to us how complex Rebekah's case actually is that we need to have all present for this meeting.



Jillian has been signed off her work for a number of weeks now and has been suffering from depression this has added a lot of additional pressure. There are many things going on in our lives at the moment that we cannot share in this forum and we would ask that you pray for us as we deal with the challenges that they bring and that we will be able to find resolutions to these issues.


Finally, I am due to travel next month on business to a couple of the countries in Asia which I am not prepared to publish on this forum. It is safe to say that this will be a very dangerous trip and I would value your prayers for me for it and also for the family left back at home. I will be gone for almost three weeks which will bring a lot of pressure to bear on Jillian.


Prayers points:


1. Continued improvement for Rebekah

2. For the meeting with the Consultants on the 24th February

3. That the medication would continue to work and that she will be able to cope with it.

4. That her behaviour would continue to improve.

5. Jillian's own health and for mine as well.

6. For my trip to Asia in March.