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

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.

Update 24 September 2009

Dear All



First of all thank you for your continued prayers for Rebekah and us as a family. They are much appreciated and continue to be required greatly. Since our last post life for us has been exceptionally hectic and I apologise to those who have been looking for updates and I just haven't had a minute to do one.



Rebekah started school on 18th August and so far she has settled in well. Her Primary 1 teacher is very happy with her progress. One of the highlights for her over the last few weeks was when she turned five and we managed to take her with one of her friends to see the Edinburgh Military Tattoo.



On the health front, we have a mixed barrel of information. At the last appointment with the epilepsy consultant she received a pretty positive report where it appeared that the epilepsy had responded to medication and was continuing to do so. We were told to monitor this over the coming weeks and if symptoms were to return then we were to contact the medical team. Over the last two to three weeks symptoms have been returning and this morning we heard that she is to have a further brain scan on 8th October. This will be a 24 hour ambulatory brain scan.



You will have noted from my previous update that the medical staff were also concerned regarding the other condition that she has which they have called sarcoidosis which is very rare in a child of Rebekah's age. Over the last week Rebekah has undergone a number of tests in connection with this and we are to see the rheumatologist on the 8th October along with a connective tissue specialist. The rheumatologist has been discussing her diagnosis with us over the phone and she wants to rule out a number of other conditions that could be causing the same symptoms before fully committing to sarcoidosis. She has told me that if she does commit to it then Rebekah will need to go back on to steroids and she would be on them for a very long time.



We have been concerned about a number of issues recently with Rebekah as we have noticed a lot of short term memory problems recurring and that she is getting her words jumbled up a bit. At her last visit to the speech and language therapist she confirmed that there had been regression. She visits the speech and language therapist again on Wednesday next week where we hope to get a further report on her progress.



Please continue to pray for Rebekah and in particular pray for wisdom for the specialists as they try to work out exactly what is wrong with her. It has been a roller coaster of a year thus far and I think it is safe to say that we are just living at the moment one week at a time. We do appreciate your prayer support and believe that without it we just wouldn't have got through these past months.

Update following scans

Dear All

As I write this update we are very conscious that so many of you continue to pray for us through these difficult days. Well today we have some very good news and some not so good to share. We met with Rebekah's consultant at the Sick Children's hospital this morning. The meeting was to review the scans taken on the 15th and 16th of this month. The consultant reported that she was delighted to tell us that as far as the epilepsy is concerned the scan showed zero epileptic discharges which means that the medication is now fully working on that front. So much so that she will not need a further scan for a number of months unless there is a deterioration in the coming weeks. This is excellent news for us all as Rebekah prepares to go into Primary 1 on the 18th August. We are very grateful to God for this answered prayer at this time. Please continue to pray that her progress will be maintained in this area and that there will be no regression.

The second bit of news was not so good. As you know Rebekah has been suffering from Sarcoidosis as well. The consultant a couple of weeks ago re-ran tests which they said at the time they thought would come back inconclusive as there was still a significant amount of steroid in her system. However her inflammatory markers test has come back with higher readings than before she went on the steroids. The normal reading is 65 or less and hers has come back at 133. This result ties in with the deterioration that we have seen with Rebekah over the past few weeks where symptoms have been returning with avengence. As a result she is now being referred back to the Rheumatologist to have further investigations carried out. Please continue to pray for this aspect of her health as well that the Lord would see fit to heal her of this in the coming days.

We also reported in a previous update that Rebekah was due to have some kidney investigations which we are also pleased have come back with a positive report.

Rebekah continues to be seen by the speech and language therapist in Livingston. We are delighted that a lot of the issues with her speech have cleared up with the treatment that she has been receiving but there are still issues that need to be overcome. We will now await the further appointments for the tests that will inevitably have to be carried out at sick kids by the Rheumatology department.

Over the coming weeks we would ask you to keep us in your prayers. We will post further updates as we have them.



Thank you once again from all of us for your support at this time.



Jonathan, Jillian, Abigail, Rebekah and David

Innes Family Update

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.