Great Ormond Street Consultation

Our appointment with Professor Cross London one week ago was so helpful.

She confirmed Sarah’s diagnosis as Lennox Gastaut this is an epileptic encephalopathy, a complicated and difficult epilepsy syndrome.

Sarah baring a miracle will always suffer seizures and will be affected cognitively as she matures, we are already seeing this.

Treatment

There are no medicines that provide a cure and as we have experienced in the past four and a half years, none seem to work to stop seizure activity for long.

As Sarah suffers many many types of seizures Professor Cross advised currently to treat the most difficult type and this is the ones for which we have now had regular emergency hospital visits for.
Sarah has 'Atypical absences seizures' that gradually lead to a 'non convulsive seizure status' a condition which causes Sarah to loose the ability to talk, walk or swallow.
We have battled this seizure pattern for nearly two years now with different drugs, and often  with awful side effects with each drug use.

We have now been given a new medicine for Sarah to try to fight this type of seizure, interestingly in all the years of drugs for epilepsy since early last century they are not much further forward in improving medicine for epilepsy.

It’s a reminder to us that the brain is the most complex organ for even the ablest person to comprehend.
Sarah has now been put on one of the oldest drugs(Ethusxomide) and we hope it will target these difficult seizures.We will know within 2 or 3 weeks so please pray it would be helpful including minimal side effects.

We are thank full for moving away from the last drug that left Sarah with very difficult behaviour problems impacting quite a bit on family  life!

Sarah still has to contend with night time tonic and tonic clonic seizures though. 
All these seizure types which 99% of the population do not realise exist as we didn't either 5 years ago.

Dr Cross gave a clear picture of Sarah’s brain tracing and in answer to prayer she is happy to give further guidance when needed. If necessary in future she will see Sarah again.
Since she is one of the leading UK epilepsy experts we feel we are receiving the best medical help we can for Sarah with her difficult condition.

Our aim with the help of some medicines is to give Sarah as good a quality of life against the ongoing seizures so balancing the use of antiepileptic drugs against there side effects. We have already tried so many.

We thank God for further help and direction for a clear diagnosis and the consultations with Professor Cross.

February 2011

We go to visit Dr Cross in Great Ormond Street Hospital, London, next Tuesday 15th February for a consultation on Sarah's recent tests.  Please pray for this meeting.

December 2010 National Young People’s Centre of Epilepsy

December 2010 two weeks before Christmas we were back down in London at the National Young People’s Centre of Epilepsy for the three day video telemetry and full assessment carried out by specialist neuro consultants and senior specialist epileptic nurses and then tests run by Psychologists. Excellent facilities, great team of people.

We were given a report on the findings and a document now that will so help all the professions involved in Sarah’s care, and that is loads!

Sarah has indeed as Professor Cross identified Lennox Gastaut a very difficult and non curable epileptic syndrome, with poor prognosis. There is also abnormal brain activity that is not easy to diagnose and perhaps we will not ever get all the answers.

It is a relief to have answers as to why Sarah has such ongoing illness even after the trial of so many medicines.

We have been told it is a very difficult illness to manage due to the severity of seizure activity that will be on going and as yet no successful treatment.

Medically they seek the best treatment that gives a quality of life while trying to dampen  the seizures and so slowing brain damage.

Frequently asked question
How do you and Ian cope?
Its simple we have a loving Heavenly Father who has gone before us and has promised to never leave us or forsake us, and all your prayers for us sustain us in all our cares.

We now wait for our appointment with Professor Cross to go over Sarah’s eeg and her expert advice on what we will treat her very difficult non convulsive status with and we have so many things to ask her.

As this year closes we give thanks for so many answered prayers, Please remember our other three girls as they have so much to contend with coping with all Sarah’s demands on mum and dad.

August to November 2010

August to November 2010 have been constant trips to Raigmore due to

Non convulsive Status and also weaning of the most troublesome medicines which itself causes seizures on withdrawing its UGH!!!

May and June 2010

May and June 2010 were great months Sarah had a remission with very little seizures and full of beans, so although no seizures to nurse we have had to be one to one with her!!! NO REST.

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.

Early 2010

This year started with Sarah continuing to be troubled with Non convulsive status (where the brain goes into non stop epileptic seizure activity but not outwardly convulsing) 
This is very distressing as Sarah loses the ability to talk, walk, eat and drink and so results in being admitted to hospital for IV drugs to stop the brain seizing.

Night seizures have been strong and frequent so we are ever thankful for the two nights our nurses come in, and Ian and I get an non interrupted sleep.

School for Sarah is a great help where they have learnt to manage her at almost all levels of seizure activity.

Her wheel chair is a great help when she is not mobile and so can still be included in the activities of the day.

Her schooling has been so interrupted and managing a full week has not always been achieved.

Sarah continues to be unstable and we continue to juggle her worse spells with clobazam.

We await a second opinion referral to Great Ormond Street Hospital.

We watch Sarah struggle so much and before we move to try another AED or other therapy we are looking for a second opinion.