Visit to Great Ormond Street April 2010

We have spoken to quite a few people asking about how Sarah’s visit to

Great Ormond Street

went, but in order to tell others that want to know but we have not had the chance to speak to, then

The visit went well; we and many others prayed we would see Prof Helen Cross, one of world’s leading authorities on childhood epilepsy and if we did that she would be able to clearly guide us as to Sarah’s condition.

These prayers were answered and more in that we saw Prof Helen Cross and she has taken Sarah on as one of her patients. She requires Sarah to have 5 days of intensive tests later this year in London. 
She also felt Sarah’s condition was one that would be difficult to treat and so impact her life ongoing, as there is no mix of medicine, diet that cracks it as yet. 
Currently we have a good degree of control over Sarah’s daytime seizures, so she is able to go to special needs school in Dingwall, but not her night seizures.  Sarah’s special diet has helped reduce her seizures but it’s not the 100% answer for her.

What delighted humbled and strengthened our faith more was the knowledge that so many people are praying for her but also so many had meet in Blythswood on the morning of the appointment to pray for Sarah and us a family.

In all this we readily admit it is tough, especially for Sarah but we know, feel and see how we are not alone and what a great Father we have, to Him be the Glory.

As you continue to pray, give thanks to God for the many doors He has opened for Sarah’s all round care and that the appointment for her 5 day test may come within the 4 to 6 months period hoped for.

We do pray for a miracle for Sarah’s health, knowing our Father can do this if it is His will, but recognising that it not our right to assume this, knowing that all things in our life work together for our good.

Thank You

Ian, Rona, Anna, Talitha, Sarah and Elmarie.

More on our visit to Great Ormond Street

April came and so we received our long awaited appointment with Professor Cross of

Great Ormond Street, the UK’s leading eptologist (consultant of epilepsy)

Our referral although delayed was to us Gods timing in that Sarah has not had any sustained periods of stability in her seizure activity even with the use of many anti epileptic medicine and the use of the Ketogenic diet.  
Cognitively we are noticing deterioration or at least no progress.

With the different medicines we see so many side effects and especially with the medicine used to stop non convulsive status causing awful behaviour problems making family life very difficult. 
This was difficult to accept as it did not help seizure activity in the long term, Sarah was also having to deal with periods in and out of hospital.

Professor Cross was asked to look at Sarah regarding her initial diagnosis and to see if some neurological illness had been missed.

Professor Cross does believe Sarah’s diagnosis is  another of the epileptic syndromes not Doose and would like to have a period of video eeg and full assessment done at the National Young People’s Centre of Epilepsy, near Gatwick, the only one of its kind in the UK.