Update 10 November 2011

Dear All,

Thank you for your continued prayers for Rebekah. It has been some time since we updated the blog and felt it was time to bring you up to date. A number of folks have been asking us for an update on her current situation.

Since we last wrote we indicated that the consultants at Sick Kids had decided to in their words take the sticky plaster away and see what happens. It has taken us till now to come down off the steroids. This has been a very trying time for us as we have gone through behavioural swings like you would not believe unless you have experienced them. During this period of steroid reduction we have started to notice small signs of symptoms returning with Rebekah. To the extent that during the last couple of weeks there has been a number of instances where it has been evident that she has lost words from her vocabulary.

In addition to noticing issues with her language we have had a meeting with the school who have shared with us their concerns regarding her current education needs and the fact that some days she does exceptionally well and then other the work bears no resemblance to the work being done. We also had a report from the Educational Psychologist who has also confirmed issues going on.

Given all of the above we decided the time had come to speak further to the consultant about the issues. Having done this yesterday we were taken a back today to receive a call from the hospital to inform us that Rebekah will have an emergency scan on Friday morning this week. We are to keep her up till midnight on Thursday and then wake her up at 5am and keep her up until she gets to the hospital. The hope is that they will get her with sleep deprivation and hopefully capture what is going on.

We would appreciate your prayers for her this week and continuing to go forward. Jillian and I have tried over these past months not to get our hopes up with Rebekah coming off the medication until we knew that the result was going to positive. So far though we are not convinced and would just ask that you continue to uphold us all in your prayers at this time.

Every blessing

Jonathan

Here is a quick update just now on how Rebekah got on at Sick Kids, Edinburgh at her recent consultation:

Jonathan & I met with our Neurologist Consultant, Dr Ailsa Mclelland and one of the Rheumatology Consultants. Rebekah had all her blood tests repeated. We were then informed that they were wanting to take her off the steroids completely by the end of this year. This would involve us reducing her steroids by 1mg every month. She is currently now on 5mg, which is 1 tablet dissolved in some juice. She remains on the other drugs. However in a couple of weeks time she will need to start taking 4 x 1mg tablets of steroids on top of her other medication.

Effectively the Dr's said to us both that they want to "peel back the sticky plaster and see what is lying underneath..." They are unsure if Rebekah's condition will remain stable as it has been for a wee while now or whether her condition will deteriorate. As many of you will know steroids mask a lot and so we are quite wary/scared as we enter this period of uncertainty. We have been here at this point before and so are looking for guidance, strength and courage as we face these next few months. The last time Rebekah came off steroids her condition deteriorated rapidly.

On the one hand we feel "happy" that the Dr's feel they can reduce the medication but equally they don;t know how she will react.

So far we are now about 3 weeks down the line of this reduction and just this am, Saturday 11th June, 2011, Rebekah came through to my bedroom with a very high temp, sore head and legs. These symptoms haven't been around for some time now and so Jonathan & I have been quite concerned about her today. She has been out of sorts today so we will continue to monitor this.

We thank you all once again for your continued interest, prayers and support. Jonathan has now completed 1 week in Afghanistan and returns home next Saturday. I have also been at work this past week and will be back in at the Edinburgh Cancer Centre this coming week. Every year I have to complete a 4 week block to keep up my registration. It has been a great support for me to have our friend Fiona Culley staying with me and helping get the children out to school etc in the am's. Also our friend, Jane has been helping to watch the kids after school and pick David up from nursery as I don;t get home till 6pm.

We will keep you posted on Rebekah's progress as we start this next phase of her treatment. All being well we are due back at Sick Kids in Nov time for more test, brain scans etc and then we will see the Cons's again in Dec to discuss things further. However should things change then will see them sooner.

Thanks again.

Jonathan, Jillian, Abigail, Rebekah and David

xxxxx

Apologies for the delay in updating Rebekah's blog as of late. Our family life in the last few months has been nothing short of chaotic. To bring you up to date Rebekah last monday, 28th March, went into Sick Kids in Edinburgh (RHSC) for a 24 hr video telemetry EEG scan. This was requested by our Cons, whom we are to see in May, following a conversation the Cons had with us in the last couple of weeks as we had been informed by the School that she was losing concentration within the classroom and unable to retain information that was given to her in a short space of time. Also we had noticed symtoms creeping back in at home again which we were concerned about. Along with the EEG scan Rebekah provided the Dr's with numerous specimens of blood for all the different Blood tests that are required. Some of the tests take up to 6 weeks to get reported on hence the length of time to the next Consultation meeting in May.

It is worthwhile pointing out that at that meeting in May we will once again see all 3 Consultants that Rebekah is under at RHSC. Two Cons are Rheumatology and of course our Neurology Cons. All of them have to consult with each other before any of her medication is altered. Once again it highlights the complexity of Rebekah's condition's when you have this level of committment from the medical team.

Rebekah has yet again visited St John's hospital (our local) today following a bout of sickness throughout last night along with a fever. At the GP's at lunchtime the Dr there requested that we take her up to the Paed's Dept as her urine sample showed she was dehydrated and ? UTI (urine infection). Since she was last there 3 weeks ago for similar symptoms and ended up being put on IV fluids and antibiotics nobody was taking any chances this time round. However, the sample provided up there was inconclusive and the Dr;s were not prepared to start her on an antibiotic without establishing the point of source of infection. As a result she was sent home and we were told that if her symptoms changed over the next 24 hours then we were to go straight to the Childrens ward again, bypassing A&E and NHS24.

Rebekah;s current medication is as follows: in the mornings she takes her Clobazam (anti-convulsant), Azathioprine (immuno-suppressant) and Prednisolone (6mg) and in the evenings she takes Clobazam + Azathioprine. This is a mixture of tablets and liquid medication.

Prayer points:

1 That she continues to be really good at taking her medication.

2 For the Consulation meeting at RHSC in May.

3 For strength for her, her siblings Abigail and David, and her parents.

Rebekah, the past few times she has been in hospital either as an Out-patient or In-patient, has been quite emotional throughout the whole process. She is now more aware of the goings on and picks up more now when the Dr's are talking to us about her and her conditions. So she is very sensitive about anyone talking about her or to her.

We are currently seeing Epilepsy Scotland and Sleep Scotland. One of the biggest problems we have at the moment is that Rebekah finds it extremely hard to get to sleep at night. More often than not Jillian can still be trying to settle her at 10pm having started the process at 8.30pm. Please pray that:

4 She will fall asleep earlier.

5 For her Dad, who is currently very unwell with a perforated ear drum, ear infection and throat infection which as of tonight he is now on his 4/5 antibiotic and more painkillers. He has also been quite sick as well. Not sure if its the change of antibiotic or the "bug" that Rebekah has kindly passed on.

No doubt more could be written but do please continue to pray for Rebekah and uphold us as a family before the Throne of Grace. We keep trusting, praying and looking to Jesus for help, guidance, patience and strength.

x

February 2011 update

Dear All,

Apologies for the silence over the winter period. These past weeks have been very challenging indeed. It is hard to believe that two years come tomorrow Rebekah took ill and that we are still dealing with the fallout and aftermath. But as we look back we give God thanks for his continued faithfulness to us as a couple and as a family.

Over the past three months Rebekah has been on a slow reduction program of her steroids. She is still on 7mg a day but the Consultant is determined to take that down to 5mg. She has on the whole been coping remarkably well. Life however has had its major challenges with infection after infection for her as well as exhausting sleep patterns. For those of you who are parents out there you will understand the frustration when you start to settle your child for bed at 8 and you are still trying to do so at 11.45. When this is a one off you can cope with it but for over three months this was the case pretty much every day of the week with a few exceptions. Whilst Jillian and I are exhausted from lack of sleep Rebekah has boundless energy which is again down to the steroids.

Again we are grateful for all the help that we have received and prayers from many all over without this we could not survive.

The Consultant now wants to get Rebekah's medication down as she has been on the high dose steroids for too long. She is concerned about all the other side effects of leaving her on them going forward at any dose higher than 5mg. So we would continue to ask you to pray that we will be able to get her down to 5mg asap and that there will be no serious relapses as a result of doing so.

One very positive bit of news is that we have shared on many occasions the issues that Rebekah has with her memory. These past couple of weeks Rebekah has been in a poetry competition in school reciting Ally Bally Ally Bally bee. She was selected along with two other from her class to enter the whole school poetry competition and last night she came first for the primary 2 classes. This has given a huge boost which we give God thanks for and indeed we give God thanks that despite her memory issues she has been able to do this.

Over the last couple of months we have been receiving help from a charity called Epilepsy Scotland which has been helpful for us just to be able to talk to people who understand some of the condition that we are dealing with day in day out. They are looking to see what other help and assistance that they can get for us particularly in the area of getting Rebekah to sleep at night.

Prayer

1. Please continue to pray for healing for Rebekah
2. Please continue to pray for the other members of the family as we deal with the situation day in day out.
3. Please pray for wisdom for the consultants treating her - particularly as the conditions are so rare they are learning a lot from Rebekah.
4. Please pray for continued progress at school.

Thanks

1. We give thanks for all the help received.
2. We give thanks for Rebekah continued high spirits and how brave she is taking her medication every day.
3. We give thanks for her success last night in the Robert Burns competition in school and the boost this has given her.
4. For God provision for us over these past two years.

There are a number of verses of scripture that come to mind but we just ask God's will to be done with Rebekah and that we would see his hand in everything.

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.