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.

End 2009

Sarah had a stable-ish sort of year as regards her epilepsy, we are getting to know how it affects her better but its very tiring at times.  Hopefully it will burn out but we wait to see.   

End 2008

2008 for the Mathesons continued to be dominated by Sarah our third daughter's, aged 7, epilepsy syndrome.

We seemed to get used to the 'stability' of 1 or 2 overnight seizures but no daytime seizures. 
After trying but failing to wean one of her drugs(clonazapam) in January(causing hospitalization) and July the seizures got worse and we gave up.

But after a good holiday in Northern Ireland in October, we tried again this time we landed in Inverness hospital for 10 days and Sarah was completely out of it for 3 of those days

She spoke only a few words 'I missed you' to her sisters in that time but that was a big encouragement.

It was suggested we try clonazapam again, the drug we had come off but we resisted through the support of our neurologist in Dundee.   Many people were praying around this time.

We also knew from the epilepsy support group we are part off, getting of this drug may help her but there was no guarantee.
After moving to Dundee hospital Sarah, got better and better such that for the last 2 months she has only had 1 short seizure and she is now back with us and we had  a great Christmas.   She is still on her special high fat diet and her favourite phrase when seeing things her sisters eat is 'I'll be allowed that, when I am better'.  Her teachers at schools are amazed and she is really going ahead again.

So we have come through a real storm but most importantly Sarah is so better after 2 very tough years.

'First Do No Harm' with Meryl Streep sometimes on True Movies is very similar to what we went through with Sarah.

October 2008

As so many of you have continued to pray for our daughter Sarah, since her diagnosis in June 2007 of Doose Syndrome (a particularly difficult and rare type of epilepsy with many seizures), we would like to provide you with an update.

Through answer to prayers for Sarah, she was able to go on the Ketogenic diet/treatment and this has led to greater than 50% reduction in her seizures.
It was wonderful to be able to let her out to play with out her protective helmet, and see her on her bike again.

In January 2008 Sarah took another step forward when she started to attend the special needs school in Dingwall full time, after having spent almost 7 months in hospital/at home due to her illness.
It was hard to separate her from her sisters, but her ease and contentment at the change of school soon made us all see it was right for her.

The year has brought its ups and downs as Sarah still has to battle with night time seizures but her medication mix has also led to complications and difficult side effects.  Her diet however has been the most positive treatment so far and we long to get her free from the most difficult drugs.

We would value your prayers in these weeks ahead, as Sarah is now being weaned of her strong medication, it is anticipated she will need to be in hospital as the withdrawal effects can be difficult, we however would like to keep her at home for as long as possible.

Sarah has also been referred to UK's leading specialist in complicated epilepsy Professor Cross, Great Ormond Street, and we pray that we will get seen soon.

Above all else we know God is in control, and we are so thankful for the many many people praying for Sarah and the blessing we receive as a result.

Thank you all for your continuing prayers for Sarah and our family. 

Ross Shire Journal March 2008

Sarah's story to date in our local paper.

TV film was turning point for Sarah

By Hector Mackenzie, Ross Shire Journal

Published:  12 March, 2008

A HOLLYWOOD star may never know the impact she has had on a Highland family.

Rona and Ian Matheson’s world was thrown into turmoil after it emerged their daughter Sarah, now 6, was suffering from a severe form of epilepsy that could see her facing anything up to 70 seizures a day.

A “drop attack” could result in the little girl falling to the ground at any moment. The Muir of Ord family, who liken the hugely upsetting experience to “passing through a hurricane”, were, at their lowest ebb, living an hour to hour existence. Their home address was well known to the ambulance service and Sarah spent upwards of 20 weeks in hospital.

Sarah’s seizures began, when she was two-and-a-half years old. Her condition was initially controlled by drugs until, in November 2006, the seizures returned. Only this time, the drugs didn’t work. There followed a nightmarish six months during which the “window” between seizures became shorter and shorter and the hospital admissions started to rack up. Then, in June last year, Sarah was diagnosed with Doose Syndrome, also known as Myoclonic-Astatic Epilepsy (MAE).

A form of epilepsy typically encountered in early childhood, it is often highly resistant to medication.

The family, like many others before them, were to learn there are many different types of epilepsy. Children like Sarah, diagnosed at the severe end of the Doose spectrum, often have great difficulty finding an effective treatment. “Sarah was having up to 70 seizures a day,” recalled her mother, Rona, whose time with Blythswood working with orphaned children in Romania helped give her strength and a sense of perspective to soldier on. “It was a severe case and the drugs were not working.”

Sarah was given a drug called clonazapam that was helping provide a two to three week respite between seizures. The downside was that the dosage had to be repeatedly increased to remain effective. Such was the severity of the situation the little girl was on many occasions admitted to Raigmore Hospital’s High Dependency Unit, a step away from Intensive Care.

Doggedly researching the condition in a bid to find a way forward, Ian and Rona found themselves trying to balance the demands of a busy family life — they have three other daughters, Anna (10), Talitha (8) and Elmarie (5) — with the need to be ever-vigilant over Sarah’s condition.
“The drop attacks were very stressful and naturally very upsetting, both to ourselves and to Sarah,” recalled Ian, the IT manager with Blythswood. “There were times when she was black and blue.” There was the constant fear, for example, that she might fall down the stairs. But while it was an exhausting and extremely challenging period in their lives, at times “an hour to hour existence”, Ian admits, they never despaired. The Christian couple found immense support from family, friends and the church.

As the case was probed by Ninewells Hospital neurologist Dr Alice Jollands, a natural, instinctive teamwork began to build up between health professionals working in different parts of the country but united in a desire to get to the bottom of the case.

Meanwhile, back in Muir of Ord, Ian and Rona recalled an earlier Friday night viewing of a film called First Do No Harm. Produced by the enormously successful Jim Abrahams, best known for spoofs like Airplane! and the Naked Gun series, it stars multiple Oscar winner Meryl Streep and tells the story of a determined woman who challenges the received wisdom of doctors when her personal research uncovers a little-known treatment called the ketogenic diet.
Abrahams, whose own son, Charlie, had suffered a similar form of epilepsy to that experienced by Sarah, felt so strongly about the issue — and was so astounded by the results of the diet — that he called in favours and persuaded Streep to star in a straight-to-TV movie designed to spread the word.

Ironically the Mathesons had, at the time they initially watched the film, been grateful that their daughter’s case was never as bad as that of the little boy portrayed in it. They now feel they were meant to see a film that was to prove a turning point in their own daughter’s treatment.
Said Ian, “When you get a diagnosis you become part of a family of people similarly affected, whether you want to or not. At least we were no longer dealing with an unknown quantity. We have never been without hope and have been greatly blessed in terms of things that have happened.”
Naturally it occurred that the diet might be beneficial to Sarah. Ian tells how he had been at a church meeting talking about Blythswood and had mentioned Sarah’s illness towards the end of his address. He learned that many people had been praying for his little girl. The following day, doctors diagnosed her condition, setting the family on the path to an answer.

While the diet was virtually unknown at Raigmore Hospital, the couple found paediatrician Dr David Goudie positive about trying it.
However, the highly specialised treatment — and the high-fat ketogenic diet is regarded as such — would first require a dietitian to be trained up. Aside from the challenge of finding someone willing to volunteer, no funds could be identified for such an enterprise. An emailed appeal for help from Matthew’s Friends coordinator Emma Williams was answered with an immediate return phone call.
Emma set up the charity after being seeing the remarkable benefits of the ketogenic diet on her own son, Matthew.

Sarah Matheson with parents Rona and Ian. Photo Derek Gordon,

She had been “fobbed off” by doctors after stumbling on details of the diet during her own research but persevered and was amazed by the results. Ian said, “She phoned and said if they tell you there’s no money tell them there’s a pot of money for use in Scotland that could be used to train a dietitian.”

And when the couple then found a dietitian up for the challenge, they began to sense a greater plan coming together. “Our own neurologist said it was a miracle how it all came together,” said Ian.

“At Raigmore they worked as a team, took on Sarah, a highly complex, specialised case, and provided an amazing service. These are the stories you tend not to hear about. It was an answer to a prayer.”

There was an immediate improvement within the first month of Sarah going on to the diet.
She was able to go back to school after months of absence and soon was back on her bike — unthinkable at one stage.
Sarah is slowly being weaned off drugs and the hope is she will one day be free of them altogether.

The little girl, fascinated by ballet, was thrilled when Dundee-based children’s charity fundraiser Jim Michie organised a family trip to see Sleeping Beauty at Eden Court.
A backstage dance with the prince and princess was a fairytale ending to an enchanting evening and she was gifted a ballet slipper as a memento.
The Mathesons are keen to tell their story to pay tribute to those who have helped them — not least the team at Raigmore Hospital whose help allowed them to remain at home and maintain a semblance of normal family life.

Dr David Goudie said, “It has been a huge burden on the family — it has been quite a long process.
“We feel Sarah has improved a lot and attribute that to the diet. She has been through a rough time. We can’t expect to be experts in everything but we can network with other specialists and experts and work as a team.

“Hopefully this is going to make a big difference to her and help us get her medication down.”

Ian meanwhile stresses the importance of their faith. “It has helped carry us through. There were times when it was like a hurricane. As Christians we see that things work together for good.

“We never despaired. It has greatly strengthened our faith and we give God the glory in this.”


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Aditional photo that did not make it into the article

September 2007

Sarah has now been on her special ketogenic high fat diet/treatment for coming up to 2 months.

Although she has had some rough periods of seizures in this time, the overall pattern is encouraging.
We are now slowly weaning the other medications she is on, to see what the full benefit or not is off the diet. Other children with this syndrome have greatly benefited with this medical plan.

Above all else we feel God is in control, we have been blessed and that fact we have amazingly been given the diet opportunity we need to have the step of faith now for the good and bad times during the wean, so as to enable the diet to be the main medication treating Sarah's acute epilespy.  This step of faith is made so much easier by the many many people praying for Sarah and also us as a family.

Thank you all for your continuing prayers for Sarah and our family, we do continue to experience God's care through them.   

Above all give thanks to God that we have been very much blessed thorough this time, with many answers to prayers and we give God the glory for His goodness to us through it all.

See the website www.matthewsfriends.org for more information on the Ketogenic diet.

Many Thanks for your continued prayers

Ian and Rona and family

Early Days

In Mid June 2007, Sarah our third daughter then aged 6, was diagnosed with Doose Syndrome or MAE epilepsy this is a particular difficult brand of epilepsy in that it features various types of epileptic attacks and finding the right anti-epileptic drugs and the dosage can be very much a trial and error process. 

With the great help of the charity MatthewFriends from July 2007 Sarah was on the ketogenic diet/treatment, a high fat and very low carbohydrate diet of food. It simulates fasting in the body and induces ketosis which is the best treatment for her acute epileptic syndrome. 

Through out this difficult period, being seeing amazing answers to prayer.  In particular the answer to prayer that Sarah has been able to start the diet under the care of Raigmore, Inverness and so soon.  She will be the first child in the Highlands to receive the diet.   

The diet is not guaranteed to be a success, but it has helped many others with this difficult to treat epilepsy, e.g. it reduces the level and types of the seizures,

Give thanks to God that we have been very much blessed thorough this time,with many answers to prayers and we give God the glory for His goodness to us through it all.

See the website www.matthewsfriends.org for more on the Ketogenic diet.  Emma Williams of ths charity has been an absolute star.