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.