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!!