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)