Two months into 2013 already

2013 began for Sarah on rather a poorer health note!

Last summer we had a fantastic holiday to Romania; when as a family we were able to travel and have fun in the sun all together!

Sarah coped very well.  It is a bigger challenge taking Sarah on travels now but one we longed to do and she kept well untill the last day of it.

The months since the holiday have been similar to what she went through before Spring 2011 in that Sarah has again consistent periods of Non Convulsive Status(NCS) seizures.
The difference in the 1+ years without NCS for Sarah was great, as she learnt more in this period and was all the more brighter and physically steady and independant. We all benifited from this remission spell.
Sarah was then able to sleep alone more, and our night nurse finished to let her be in her own room and Ian and I began to get good sleeps!
 
What’s changed?  Well she has started to take longer and stronger and more frequent night seizures (she was never completely free from having the odd night seizure but short ones!).  As they increased we began to see the NCS creep back into the picture. This is a particularly difficuilt type of seizure as it stops Sarah functioning normaly, her speech goes her head droops and she is very very unsteady or unable to co ordinate herself. We need to assist her with everything.  The periods of NCS have become more and more frequent and as in the past there is not a medication that stops it, apart from a little clobazam which is strong drug that also affects her behaviour badly!  Clobozam is an addictive drug and the more you have it in your system the more you need of it to work and the more you have of it the worse the behaviour becomes!! Its a very short term answer with no long term beneifit!

At the moment we are using this drug to give her a period of relief however the gap has become shorter. Since the last two months getting a spell of only 5 good days without the NCS seizures.

Our neurologist switched the times she took her anti epileptic medicine Phenotyn around in November 2012 in the hope it would improve things; however we are not seeing any change.  Now the neurologist wants to see if the tablet form of the medicine Phenotyn, that was working, rather than the liquid form of it will work better.

It is very difficuilt to go backwards after such a good spell for all of us. We see how Sarah herself notices her seizures much more having been free off them and this is hard she really does try hard to keep going admidst her wobbles and sore heads!

Thanks for sharing in keeping up with how Sarah is getting on and thank you for your ongoing prayers we will post how she is getting on in the Spring of 2013.

Good news on NCS - Early June 2012

Following on from her bad day, it was wonderful for Sarah to sleep 13 hours, what an answer to prayer as she woke up no next day having had no seizures over night and so much better!

Her speech was back and her co ordination so much better. She was not so pleased when I said you will have to stay at home with me today to rest.

With stability I was able to get her to her dentist appointment, where the dentist confirmed a sore mouth and a back molar cutting. This is a relief as its at least a reason for seizures as so often in the past cutting teeth or loosing them has triggered seizures!

Having had just one rescue medicine dose, sleeping so long and knowing there was teeth problems we held back on giving further rescue tablets to be able to avoid side effects ( its not easy to forget the awful agony of the side effects of the rescue medicine.)

We have been given anaesthetic spray for her sore gums which are suffering also as a result of a horrible side effect of her current anti-epileptic medicine. Its hard, a medicine helping her seizures yet the side effect causing pain that triggers another type of her seizures!!!!!

We are aware how quickly Sarah's seizures can come and so we continue to pray that her night seizures will stay away for a while to give Sarah an opportunity to regain strength and that her teeth will come through quick.

Thanks for keeping up and for your kind thoughts wishes and prayers

Ian, Rona and girls xxxx

The return of NCS - Late May 2012

Sarah over the last weekend has had a build up of stronger and longer lasting tonic clonics in her sleep.

Today she woke up in Non-convulsive status(NCS). This is where she is extremely wobbly unable to co ordinate her movements, unable to speak without slurring her words and so its difficult to understand her. She is unable to hold her head up much and is in what looks like a drunk stupor. It is caused by non stop seizure activity going on all over the brain.

We took her to hospital where we would have hoped her bloods would reveal her medicine levels would be low in her bloods and an IV infusion would boost her. But unfortunately not, her levels were good suggesting that these seizures have appeared again after a year and without reason we had to look at using rescue medicines. We are very anxious about this as most of the rescue medicines are addictive and cause seizure activity on withdrawing them! Also Sarah in the past has regularly experienced horrible side effects mainly poor behaviour and poor concentration and deterioration in cognitive learning.

We have experienced such freedom from all this for over a year it seems so hard to be going back wards again.

I have got a dental appointment tomorrow for her as she has been complaining about a sore tooth we are aware her epilepsy can be triggered by pain?

Also Sarah has been more active as she has been so well.

It is also a reminder her condition is a difficult one and we would value your prayers at this time an ongoing that she would not remain in NCS and that the rescue medicine would be short term and without side effects.

will keep you posted

Thank you for your care and prayers.

Spring 2012

Nearly coming to the end of another School term.

 

Sarah continues to be well. We are having the odd day where Sarah has some seizures and then her speech is poorer and she becomes very wobbly and needs our assistance with all her needs.

 

This seems to happen after a very busy day or over exciting activities through the week. However with a lot of rest and checking the medicine levels Sarah is bouncing back from these periods of non stop seizure activity.  Where it has been a bit longer than 48 hours she has to get her bloods checked and if necessary her medication adjusted.

 

This pattern of health is very encouraging, not encouraging having seizures but that we see recovery with out admittance to hospital. Sarah is also very aware now of her seizures saying things like "oh no I am wobbly or my hands are jumping"! We admire her determination as always to battle on regardless only frustrated at falling over or dropping items while trying to carry on eating etc, or not being understood as her speech becomes slurred in the midst of seizure activity.

 

Another positive is she has attended almost every day of the past 2 terms at school. In school she is more active in all activities participating with understanding and even contributing freely in the class.

Through this time of Sarah being more well we are also able to see just where she is at.  It is obvious that Sarah has special needs but we can see that she has also been able to retain some of her learning from periods between seizures.  Its encouraging she holds on to skills learnt. Sarah is not able to read or write but has suddenly showed she can emotionally express and understand feelings and read certain situations.  We did not see this for the past years where most of her communication has been to express her needs only. Sarah is a thankful wee girl always expressing how nice people are to her and her favourite phrase is to say "I had a lovely day, what about you?".

 

Getting used to socialising out with school or home can be a difficulty, but being together as a family in church again is a blessing, Sarah has even gone back to Sunday School.

 

We are very aware that Sarah's condition is long term and not curable and having met now with parents with children with LGS we can see that the future may well bring more difficulties. We know Sarah has been and is so prayed for and this is first and for most her greatest help and strength. Even as we write she having just dropped off to sleep has taken a tonic clonic seizure, how wonderful to know "He who watches over Israel never slumbers or sleeps"

 

Sarah's medication remains at quite low doses and so we are not having side effects a big bonus for behaviour and alertness!

 

We are still awaiting news for her referral to London for assessment by the National centre for young people with epilepsy.

 

Rona has become a volunteer with the charity Mathews Friends, they so supported us and brought funding for a ketogenic dietitian for Raigmore. (Sarah was on the diet for two years). 
Rona will be a link person for the Highlands and so we would like to get a support group happening for parents with children with difficult epilepsy in the North. Please look at Mathews Friends web page to learn a a bit more.

 

Please keep praying for Sarah we are so Thankful for her current good health and progress.

Anna Talitha and Elmarie have all had an easier time and these past months they have had a wee sister not an ILL sister, that's been great for them in all kinds of ways not experienced for Five years!!

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.