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!!