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.
Wednesday 24 February 2010
Saturday 6 February 2010
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.
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.
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