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.

Update 25 December 2009

Hi All,

First of all a very Merry Christmas from a very snowy Livingston to you all. Today we have celebrated the Birth of Jesus and we give thanks for the fact that was born in a manger all those years ago. We also give thanks for the fact that He died to save each and everyone of us. May God be with each and everyone of you at this time of the year.

I am writing this at the end of Christmas day 2009. As a family we have spent the day over at my Sister's house where the whole family congregated, with the exception of my other sister Ruth and her family. A good time was had by all.

This week has been an exceptionally busy one for us as a family, on Monday we made the trip through the snow and ice upto Inverness, to visit with my Gran who turned 100 on Tuesday of this week. It was great to be with her and to be able to take Jillian and the children along as well. Rebekah coped really well, although half way through it was becoming quite overwhelming for her.

Turning to an update on Rebekah, ten days ago we had an appointment with the Consultant from Sick Kids to review Rebekah's case. Rebekah had been coping quite well on the medication so far. However, we were unsure whether it is actually doing what the Consultants hope that it will do. So far a lot of the symptoms that we would have expected to disappear have stayed despite the amount of medication being pumped into her. This is exceptionally worrying as you don't want to give your child medication at the dose that it is if it isn't actually doing the job that you expect.

During the last week we learned that Rebekah is to have another 24 hour brain scan next Tuesday 29th/Wednesday 30th. This will help the Consultant find out whether the epilepsy is being treated or not. She will inform us of the results by telephone once the scan has been reported on.

We have been experiencing some difficult days with Rebekah over the last few days and have been finding her behaviour exceptionally challenging at times. We know that it is the medication as much as anything else and we can only do our best to cope with it each day.

Thank you for your continued prayers for us, we do very much appreciate them.

Please continue to pray for us over the coming weeks. Some prayer points:

1. Rebekah will be healed

2. Rebekah will continue to tolerate the medication and be able to attend school when in session.

3. That 2010 for us as a family will be one of blessing and that we will see the Lord's hand in all that we do.

4. Pray for Jillian and I as we cope daily with the struggles that Rebekah's health brings.

5. Pray for Jillian that she would be able to return to work in the New Year.

6. Pray for Abigail & David as they cope with their sisters mood swings and being the brunt sometimes of their sister's temper tantrums.

Update 8 December 2009

Dear All

I just wanted to post a short update at the moment to ask you to continue to pray for Rebekah. She has just started her fourth week of steroids and immunosuppressants drugs. So far she has not had too many bad side effects, although there have been some pretty difficult days over this period. We now have our very hungry daughter back and I am considering putting locks on the cupboard doors to keep her out.

We are very grateful to God that to date Rebekah has managed to continue to go to school and was one of the narrators in her christmas nativity last week. She had to say one sentence which she did very well indeed.

These past four weeks have probably for Jillian and I been the most difficult believe it or not since this all began. I think the full impact of what is going on has hit us afresh and we have been really struggling to cope with it all. Jillian was signed off her work again last week and I am hoping that she will be able to go back to work soon. I know I feel I have been running on empty most of the time.

Part of the problem is that we are in what I term no-mans land just now as we have a lot of questions for the consultants unanswered, but also until we get the next brain scans done which we are told maybe before Christmas but equally it may be just after we don't really know if the drugs are actually working. We will see the consultant next Wednesday (16th) which will hopefully provide us with some information.

We appreciate your support and prayers for us as a family more than you will know. I think it is also good to remember that we do have a God who hears and answers prayers. Our prayer for the end of this year and the start of the new one is that the Lord will heal our daughter and that we will have a much better 2010 than this year has been.

Thank you once again for your support.

Jonathan, Jillian, Abigail, Rebekah and David

Friday 13 November 2009

First of all thank you all once again for your continued prayers for Rebekah over these past weeks since she had the emergency MRI and CT. We have finally heard back from one of the consultant's this afternoon and the situation is as follows:

MRI & CT scans are both inconclusive. The Consultant has informed us that the only way that they are now going to get conclusive evidence is to take a biopsy of Rebekah's brain and chest which they are not prepared to do. The Rheumatology consultants are 75% convinced that Neuro Sarcoid is at work on Rebekah and they have decided to now start agressive treatment to try and bring it under control. With effect from Monday she will be going on to a very high dose of steroid along with an anti inflammtary drug which will attack her immune system.

In addition, the epilepsy consultant has confirmed that Rebekah's epilepsy is now as bad as it was back in February and that we are effectively starting the treatment there all over again.

This is an exceptionally worrying time for us as a family, we are struggling to see any light at the end of the tunnel. We cannot understand what is going on with our child and are struggling to take it all in. Please continue to pray for peace of mind, and help each day as we take each day at a time.

The last time Rebekah was on the high dose steroid it was exceptionally draining and neither of us are looking forward to this experience at all. We just trust and pray that we will be able to cope in the days that lie ahead as we deal with the issues of each day.

We do rest in the knowledge that we have a heavenly father who cares for us and we trust, pray and know that he will sustain us through these difficult days.

Specific prayer points

1. Pray for healing for Rebekah

2. Pray for her as she attends school and being on such high dose medication.

3. Pray for those who have the responsibility of teaching her, that they will be able to deal with her in the school context over the coming weeks.

4. Pray for the family, the impact on Abigail and David.

5. Pray for Jillian and I as we face up to the challenges each day brings.

6. Pray that through our suffering we may see the glory of our God in what is happening.

Thanks again for your prayers

Jonathan, Jillian, Abigail, Rebekah and David