Moving Ahead - End September 2011

We have got so used to interruptions and delays in our family due to careing for Sarah and hospital visits, but this delay in writing an update on the blog is actually as we've been busy with lots of lovely things!

 

Sarah is such a different wee girl these days, full of conversation , interaction, role play, physical activity and singing.

Her appetite and ability to sit with us at the table and feed herself is great, no excess drooling and poor coordination.

 

In school she is learning and retaining information.  Her recall is so much better. We get regular updates of her day at school but what's also lovely is she is so keen to hear all about our day e.g. "so Dad how was your day at Blythswood" 

Her walking is so much steadier and her co ordination is improved.  She has gained confidence in her physical activities outdoor play swimming and even horse riding!

 

What about all those seizures so have they gone?
Well they are not all gone and in fact Sarah continues to have regular seizure activity through the night, if she has some early morning ones they do leave her groggy first thing and at times wobbly.

As this was not the case for the first two months on Phenytoin we discussed it at her recent visit to the Neurologist. She has suggested to shift the dose so that Sarah receives more of her medicine at night so we hope this will cut out some night seizures and also help with her sleeping. She has been poor at falling asleep.

Interrupted nights are hard but we hope we can get stability back.  Sarah is aware now of the seizures as she feels the effects and talks about it.    

 

Our medical team continue to support the referral to the London Center for Epilepsy for a full assessment on Sarah but as yet our Highland Trust has not given approval.  Please pray we will receive this, as we so desire to have it and to learn from such an expert team dealing with complicated cases such as our darling Sarah.

 

Many Thanks

Thursday 4th August - Summer Holidays 2011

Sarah finished off her school term in great health, so for a change this year she was able to participate in all the end of term fun activities.

Seizure activity has very slightly crept back into some of her nights, early mornings. 
Her medication was slightly adjusted at the start of the holidays.  This has helped but as the seizures are not having to much impact, we do not want the medicine to go up to much as this is when side effects could cause her problems.

Sarah is aware she is having seizures and bad feelings etc are interrupting her sleep.  She will say her head gets sore. It is a new stage where once she knew nothing different and battled on in the midst of constant seizures, she now realises the difference being well and unwell.

Something else new for Sarah, is that she is out playing on her much loved tricycle, joining in with other children around us this summer.
This is so great after so many holidays spent in hospital or unstable at home!

Sarah has been able to go away to her friends for the day without mum or dad in toe, what a boost for her.

She went to our Church summer Bible club and again joining in on the activities there without her mum!

All this improvement has brought transformation to our home and our lives but wonderfully to Sarah.

Hope all of you are having a good summer thanks for your continuing prayers. x

16th June 2011 - Prayer of Thanks

Pheyntoin since it was adjusted on the 23rd May has kept Sarah stable and seizure free.

A Prayer of Thanks to God was given by our Minister in Church last Sunday, for this period of great health, and Sarah who is so often absent from Church was able to be with us there.

Life without seizures is so amazing, no hospital visits, no nursing routines at home e.g. who will feed, bath, dress, undress, give medicines, watch, care etc etc that has been so much part of our family routine for a long time.  Sarah is currently saying "I can do it myself!" most of the time.

Sarah is a play mate again for her younger sister Elmarie and this has brought such delight to both of them.

Sarah is calling Elmarie her best friend and Elmarie is proud of being able to make up good games for Sarah to follow (for her, its equivalent to having a younger sister follow after you!)

So its all wonderfully good to see.  Yes this is a light on for us all as a family and for Sarah a real quality of life.

Sarah has special needs and she has needs that a child her age would have grown past.  Her attention span is lower, and so demands a lot more attention. She struggles to cope with routines and people outside those she is used to i.e. school and home. Her reaction is often to be overactive or  show destructive behaviour when out of her routine. This is especially hard when her sisters have friends over and her behaviour is challenging.

Medications and seizure activity have accounted for a lot of Sarahs behaviour patterns so in this clearer period it is useful to know and assess just where Sarah is at in her all round development.

School this term has had lots of fun, outings and learning.  Its just great to be getting news of school from Sarah every day as she is able to recall and describe situations. 
A highlight this past few weeks has to be a whole afternoon play and have tea with her lovely friend Jessica. 
They both went to nursery and started school together and although Sarah had to leave mainstream they remain good friends.   A very precious friendship that lets Sarah be independant from us for a short time.

We will enjoy this period of seizure freedom for how ever long it will last.

We are praying, that while Sarah is in a period of good health, she will get the opportunity to go to the Epilepsy Centre in London again, so that she can have a full educational psychologist assessment.  This will give a clear picture of her learning and understanding capabilities.

At the moment she has been recommended for referal and so we wait the approval from the NHS Highland Trust.  Please pray for this.

Thanks again for all your prayers and join with us in thanksgiving to our Heavenly Father for this settled spell.

May 23rd 2011 - The Storms return

Just as our weather turned stormy so did our Sarah's settled spell turn.

Friday morning early morning seizures returned, and they increased as the weekend went on.
Her speech became slower, her co ordination decreased and her ability to fully function was much poorer again.

The feeling of disappointment hit us all.
Sunday Sarah became drolly and needed help with all functions, it didn't look good.
Sunday into Monday morning she had tonic seizures hourly.  So it was no surprise this Monday morning that Sarah was not fully with it and showing signs of NCS again.

Sarah spent a good part of the day in Hospital but thanks to our efficient medical team her stay was short.  Her bloods were checked and the results showed a decrease in the level of pheyntoin in her blood. This gave us hope as it could well be the reason for the return of her seizures. Her daily dose will be increased now and in the mean time she received a small dose of phenytoin IV.  She was brave as usual but more so as her veins were proving hard to get a line into.  MFR(local radio station) were on the Children's Ward today and spoke to Rona in the midst of this.  They are supporting the Archie Foundation a fund to help revamp the whole Children's ward. After the Phenytoin was given we were allowed home.

We would say tonight there was already slight improvement and at least Sarah ate and drank with out help.

The phenytoin has to be so finely tuned, so we are praying that an increase in the dose will bring it back up to the therapeutic level in her body as it was at in the past weeks of stability.

May 17th – Good News

Its been  a few weeks since we wrote....... we finished of the last blog on the 26th April praying for some stability!!!!

Since late 2010 Sarah had been many times back and forward to the hospital with non convulsive status, each time getting a loading dose of Phenytoin through a drip(IV). This usually give her a window of seizure freedom for a few nights and keeps the worst away for up to two weeks, giving a short period out of hospital!

Sarah's Doctor, Dr Jollands recommended at her clinic that we put Sarah on Phenytoin daily.  It is a very old anti epileptic drug but since it had effect by a drip(IV) and was really the only drug that had a positive effect on all seizure activity (Sarah has regularly a battle with 4 and often more types of seziures) we saw the logic and agreed it was worth a try, even although another drug had previously been proposed as the next one to try.

It is very scary trying a new anti-epileptic drug because we find the biggest problems are always the side effects against very little good effect towards stopping seizures. Sarah has to have her bloods done every week on this drug, as on the wrong dose it causes the blood to go toxic!

So Phenytoin was started 4 weeks ago and now over 3 weeks later Sarah continues to be SEZIURE FREE!!!!.  She is on a starting dose which is at a low therapeutic range and as yet we have not seen any ugly side effects.

We Praise God for this respite from seizures for her and we are enjoying the freedom from hospital visits.  We thank God for the light that has come on for Sarah, enabling her to converse as little girl should, co-ordinate herself much better, play more interactively with her sisters, concentrate for longer periods, the list goes on....

Sarah’s School have noticed in great detail how Sarah has improved, how her chat and interaction have so changed for the good and how her learning ability has returned also.  They are delighted.

We are amazed and so encouraged to have a glimpse again of the old Sarah, we believed had all but disappeared.  We have hope again for her development if we could stop the seizure activity for a good period of time.

Really a light has come on again and we can only enjoy it and say Praise God. This is the first seizure free period in over two years, as we have had a good period of two months back in late 2008/early 2009.  
As we are aware we might not get a long period, so we will enjoy this time and continue to Pray that this medicine, one of the oldest in its field and we are told one of the cheapest, will continue to work a miracle for our Sarah.  Please pray with us.

Her current medication is Steriods now down to 3mg daily Pheyntoin 6.5mls twice daily and Valproate 6mls twice daily.

Sarah is talking non stop and singing, when asked by her dad where are have your seizures gone she replied “Jesus took them" and pointed to her belly and said "to there!”.

(Sports Day Out - Sarah Double Medal Winner, would not have been possible to be part of it most of this year)


 
 

Hospital Update

Sarah very disoriented and wobbly today due to yesterdays IV medicines, leaving her tired and very irritiable for most of the day and into the evening.

Her seizures have for now calmed but we will know more in next 48 hours if these recent seizure types (tonic seizures) are still there.

Its been hard to start a new school term with Sarah in hospital again.  Pray for stability and that her latest new drug Phenyotyn will be effective. Thanks.

Easter 2011

Easter 2011

Easter Friday arrived and six weeks since Sarah was last in Hospital.  Sarah completed her six week steroid course with no magic seizure control but at least Sarah was given an appetite boost and a little weight gain.

Her broken ankle healed and plaster off before we started our holidays in early April.

Ethosuximide had to be discontinued as Sarah had no benefit from it and awful side effects like loosing speech and poor appetite.

We took off for a holiday to the West, Sarah was having a lot of seizure activity but as the steroids were enabling her to eat and drink we were determined to keep her going. This we did as we had picnics and paddling on a beach on Skye. Went on a few trips swimming, took a trip to Applecross and climbed the famous ‘Sand’ dunes. Sarah with the help of dad and her uncle reached the top, much to her delight!

Collected crabs on the shores at Arnisdale, had dinners at grannies and lots of play at her cousins, it was great weather and we all benefited from being away from home and hospital!

Sarah had to return home the second week of the holidays as she had a week of appointments.

Tuesday 19th was her Neurology clinic where our neurologist  confirmed on seeing Sarah that she was in NCS all be it high functioning but a clear indicator the steroids were not stopping it as hoped.  Steriods are now being weaned and Sarah was started on Phenytoin. This state of Non Convulsive Status (NCS)has troubled Sarah for such a long time now and only IV  Phenytoin takes her out of it at least short term so for this reason Dr Jollands has now prescribed it as a daily oral dose.

We also discussed the recommendation for Sarah to have a full clinical psychology assessment done at the NCYPE that diagnosed Sarah last December. Dr Jollands will refer her and we will have to wait and see if our local NHS trust will fund this.

Sarah had a lovely day out with her respite carers on Saturday to Nairn beach we heard all about the walk the bus and the chips!!

Easter Saturday night she had a lot of seizures through the night and Easter Sunday she was very wobbly. Easter Sunday night through till Easter Monday morning she had had seizures every hour.  We have had seizure activity through the night all holiday some nights more than others, however she seemed to be having more.

To our surprise Easter Monday 25th she woke eager to eat breakfast and seemed fairly bright.

However late morning Sarah started to have short tonic seizures where they were happening every 5 minutes and after lunch time we had to get an ambulance to take her to hospital by which time she was then having them just 3 minutes apart.

IV medicines were given to stop the seizure activity and tonight she is settled and we pray she will not go back into them overnight or early morning.

Friday 25th March - Fractured Days

Another eventful week, Sarah has been weaning her medicine and although night time seizures have been troublesome we have not had any increase of seizure activity during the day, so we are thankful for that.

A persistent night cough with bursts during the day and no obvious signs of a cold took us to visit the GP to be told the cough was due to the steroids irritating her stomach causing a reflux cough and Gaviscon was prescribed more medicine!!

With a sunny day and home from school Sarah was keen to be out doors. On going down the back door steps she went over her ankle. 

(Sarah can often be a bit wobbly due to her hyper joint mobility mixed with her ongoing absence seizures.)

Anyway not believing it was to bad an injury the week went on but yesterday as she was still not walking well we visited the GP again who sent us to A&E where a cast was put on because it looked like a small fracture!

So Sarah is not upwardly mobile but manages to bottom shuffle and thankfully she is used to having a wheel chair as she is not strong enough for crutches.

Saturday 19th March - Education that is Special

Sarah attends St Clements Special Needs School in Dingwall and as they know her so well it is possible for us to confidently put her to school a good number of days when she is not in hospital.
Some times in her day she will have brighter spells, these times need to capitalised upon.  Through her school Sarah receives stimulation, encouragement, loads of fun and much love.

Special Education is something we are no experts on but we have read and listened to various opinions and values including its comparison to mainstream education.

Every special child has unique needs but we certainly gain with Sarah being in a special needs school. Sarah has a significant gap cognitively from her peers in mainstream and so would constantly be regarded as the one to one. In St Clements she is one of the class and has a healthy competitive attitude with her class peers. Sarah has to learn to care, share work in groups and listen. In mainstream schooling she would almost always have to be put first because of her needs.

Her health issues make her vulnerable.  In mainstream she would have to be constantly with a one to one making her different again.  In St Clements it is shared and she enjoys all her Classroom Assistants being there for her, though not always being one to one.

Her education programme is so hard to get right as her health is so poor and so interrupted by hospital visits. We do hope for an in depth psychologist assessment to be done at the NCYPE.  The NCYPE was the centre which helped diagnose Sarah at the end of last year.  These tests would give a better insight as to where Sarah is cognitively and also would help better equip us and her school as to her learning abilities.  In addition for the future it would give a base line to work from and to refer back to.  The assessment is usually covered over a two week period and we are praying that we will get referred as there is no centre with this service for Sarah here in Scotland.

It was not easy to put Sarah to special needs school but life with Sarah is not easy and we do not think she has or will have an easy life so we will try to give her the best help with least stress.  We pray it all can maximise her learning abilities in an environment that is conducive for this.

It is unfortunate that despite all the needs of the children in St Clements they have such an old building. The St Clements staff do work well with the limitations placed on them due to the building.  It does seem like special needs education still needs more funding focus! 

Below a few pictures of Sarah at school

Friday March 18th - Another Drug Wean

Thanks for the positive feed back re this blog, we are trying to keep it up to date without making it dull writing to often and with little information.

Sarah is really not herself, this past two weeks have been hard but not at her most difficult as not required hospital treatment.

So now it is clear Ethosuximide the anti-epileptic drug introduced a month ago is not stopping the seizures and yet giving horrible side effects.

We miss our lively interactive jolly wee girl, in her place we have a very clingy subdued tired girl, who needs even more care. Her night seizures have increased and seem to be longer and stronger UGH!!!!!

The day time ones are not gone either, so clearly this medicine is not working for Sarah.

Today as we discussed these changes with her epilepsy nurse, we all agreed it was time to take the anti epileptic drug out. This will be a vulnerable time again for Sarah, as we have never had a medicine yet that on withdrawal does not cause some sort of seizure problems.

Next plan will be to try another medicine as recommended by Great Ormond Stree

The new drug will be number 8 anti-epileptic drug now that Sarah has tried.  Usually it is said that after trying the first two most appropriate anti-epileptic drugs and being unsuccessful then the probability is low to get one to work.

Its worse than a lottery (no we don't indulge ha ha!!)

It is three weeks since her drop seizure that caused Sarah to have a nasty head injury and we are so thankful that the drop seizures have not returned.
It is nerve wracking even thinking about them and the injury's that they can cause Sarah.  It took us all time to get over such a fright and with Sarah having regular night seizures it is hard to catch up on energy levels!

We are thankful for the overnight residential respite care in the week that gives us a break from Sarah’s demanding care routine. She is collected from school and so has the opportunity to be independent from us, having her ‘sleep over’ in Sarah’s words.

Pray for her withdrawal of ethosuximide, for her body coping with the steroids.

For Anna, Talitha and Elmarie in the midst of Sarah’s needs.

For all the children, in the care of St Clements, more on it in the next post.

Give thanks for the team of professionals that surround Sarah, we as a family are so grateful.

St Clements visits Sarah at hospital, see March 4th post.

Sunday 6th March - A Mixed Day

It has been a mixed day Sarah has had a lot of atypical absence seizures this is the type her new medication should be taking away but seems not.  The side effects of it for her being subdued and not having to much life or interest is of concern to us.

How ever we tried to encourage a play time outside with her little sister Elmarie and she enjoyed making a home movie of herself, with Dad being the camera man of sorts!

Sarah managed a little food three times today.

It is hard that she needs everything done for her again as she has very poor tone mostly due to having so many atypical absences.

This is a week of waiting for change as her new anti epileptic medicine goes into her blood stream having had it at a higher dose over two weeks. Also we will be through week one of steroids. Sarah will need one to one care and as her night seizures seem to be more and longer we will be taking turns to sleep with her again, but thankful for our Monday and Tuesday nights our Nurse support is at home.

We give thanks for having Sarah home again, and for the love many people give to her.

We again give thanks for all the prayers and all the support to us as a family e,g. meals, phone calls ,sleep overs for the other girls all so thoughtful.  Thank You all.

Saturday 5th March - Home Sweet Home

Sarah is very quiet and refusing now to take her increase medication. 
We are concerned Sarah is home sick and as she is no longer in NCS we discussed with the Dr's that it was better she got home.

It certainly worked we got a really positive response from Sarah on packing her bags to come home!!

Saturday evening Sarah had seizures the early/mid part of the night tonic clonics and tonics.

Also a bit of a wake up spell, is this steroids taking effect?? they do tend to interfere with sleep!!!!

Friday 4th March - Friends Therapy

What a lovely Friday full of visitors for Sarah.

Thank you to Margaret Berry Sarah’s teacher, who brought Sarah’s class to visit her in her own words "my best friends came”.  This included her class room assistants whom she also adores. We all saw how she came to life and although not talking much became brighter and full of smiles. Just lovely!

In the evening Sarah had a visit from her wee cousin from Skye, again we saw how this so cheered her up.

Sarah remains quite subdued and her absence seizures interrupting her day quite a bit.

The drip had to go up again over night as her food and fluid intake has been so poor in the day.

Thursday 3rd March - Scan and Steriods

The last two days Sarah has just been going slowly into more and more seizure activity. Her new medicine has dulled her quite a lot and she has been so quiet and unresponsive.

Yesterday her seizures began to lead her back into her non convulsive state(NCS), she had quite a few prolonged seizures through the night.

We had a review of her treatment with the consultant epilepsy nurse and the Neurologist.

Her new medicine is now on board for two weeks.  Although not yet stopping her atypical absence seizures it has not reached its full dose and so must keep increasing until its at its prescribed dose.  This is hard as the side effects are showing more than any help at this stage!

As she was in a state of seizures yesterday it was agreed to commence a 6 week course of steroids.  
This has been seen to help in very difficult cases of epilepsy and was recommended by Dr Cross in Great Ormond Street
to try and give Sarah a rest from these difficult periods of NCS, while the anti epileptic medicine takes effect.

As the non convulsive status was present again another IV dose was given of a rescue medicine.

At 6.30pm this evening Sarah's observations changed and there was some concern as to why her pupils were differing sizes.
She had to be taken for another CT scan to make sure this was not anything connected to her head knock last weekend.

After another Anaesthetic and a worrying wait we were reassured that the CT scan was not worrying.

It has been a difficult week and one filled with sadness as the reality of Sarah's condition hits us as a family once again.

The instability of seizure activity, the reality of serious injury from seizures and the effects of the strong medicines that she is on and how they can so effect her wee personality and so we have to try to balance quality of life against freedom from seizures.

It has also been a difficult and tiring week for her sisters as we try and keep there routines normal, amidst being in and out of hospital.

The hospital staff have been so caring.

Thank-you so much for all your kind and good wishes and be encouraged God is answering your prayers. We feel upheld.

Tuesday 1st March - A new month but not the old Sarah

Today it became evident that Sarah has real side effects from her new anti epileptic drug.
Her head is no longer sore from her drop seizure.

However she is not talking very well, is droopy and she has no appetite.She also just wanted to sit on Rona's knee or lie on her bed.　

Sarah who always smiles through everything was very serious and it took bags of effort to get a good smile.

She was measured up for her new helmet and with lots of encouragement choose purple. 
We do pray she will get a purple one as they do not always make them in attractive colours.

The highlight of her day had to be receiving a Get Well card from her class mates with lots of kisses in it from all the boys thank you all in class 2 St Clements School, you made her smile and so made her mum and dad smile too!!

Monday 28th February - Slow Progress

So encouraged to learn of all the prayers for us as a family again, little Elmarie got such a fright by seeing Sarah's seizure the drops are the worst for us all. Talitha was also very upset.

Sarah was a little brighter today but very quiet her drip was stopped in the hope she would pick up with her drinking but in the afternoon they decided to put it back up as she had no appetite either.

Thanks to some lovely visitors we were able to see she was recovering from her sore head.
unfortunately as the day went on and Sarah remained very dull and her speech poor we have become concerned that the new medicine started now 12 days ago is having these side effects on her.

It was such a comfort that we could leave her tonight with her own nurse that looks after her every Monday night.

As again there is concern over what is her epilepsy and what at this stage should be left over symptoms from hitting her head.

Sunday 27th February - Close observations

Sarah had very close observation all night she remained drowsy but had to be checked every half hour then hourly, this is a real difficulty for medical staff as Sarahs epilepsy can be very close symptoms to what you look for in patients with bad head injury's ie not speaking well, not responding quickly jerks etc
So its been a very stressful  day as we try to separate out whats what. 

Sarah has been very sleepy and sickly but receiving anti sickness medication as well as regular pain relief for her head.

Saturday 26th February - A Big Shock

Sarah although a bit slower showed recovery out of her non stop seizures and we were so encouraged. we took her with two of her sisters out to the little cafe at the front of the hospital for a treat.
As she happily chatted away sharing sweets with her sisters she crashed backwards onto the floor hitting her head with such force the noise brought the cafe to a silence! This was a drop seizure from standing position no warning  at all and as if she was just shot she fell full force backwards onto her head.

We ran to the ward with her but there she started to vomit and not respond so she was taken to theatre for a CT Scan.

We were told It would be a quick procedure a short Anaesthetic just to see there was no fracture etc.

Sarah had a very small bleed which led them to sedate her for longer and consult with the neuro surgeon, preparing us that we may be sent to Edinburgh where there they are set up for more intensive care.

It was avery long four hours we waited as she was kept in recovery in theatre.　
It was such a relief to learn her injury did not merit a transfer away.
People had been praying.

Friday 25th February back to hospital

Sarah had seizures nearly every hour last night, we are used to nightly seizures but she had longer and stronger ones last night. But as can so often happen Sarah got up with help eat her breakfast and although slow and still having absences went of to school at 9.15am.

On return from school she was very droopy and not talking much by tea time she was again in a state of NCS we took her to hospital where as last weekend she received IV medicine.

Thursday 24th February - One week of another drug

One week having new Anti epileptic drug ethosuximide on board we are so hoping this will take away the Atypical absences that cause her to go in to non convulsive status and so stop her having to be emergency admitted to hospital!　

We have been reducing another medicine down that has not been working and also it has caused such behavioural problems.

February 18th to 21st - another hospital visit

Friday 18th
Sarah has gone into Non Convulsive Status(NCS), took her to hospital where she received IV medicine.

Saturday 19th
Still having lots of seizures so commenced on Hemeneverin as recommended by Neurologist in NCYPE.

Sunday 20th
Slight improvement, poor speech still a bit wobbly but talking once again. Not enjoying taste of new rescue medicine!

Monday 21st
Sarah brighter and much more alert ready for home yipee!!

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