Great Ormond Street Consultation

Our appointment with Professor Cross London one week ago was so helpful.

She confirmed Sarah’s diagnosis as Lennox Gastaut this is an epileptic encephalopathy, a complicated and difficult epilepsy syndrome.

Sarah baring a miracle will always suffer seizures and will be affected cognitively as she matures, we are already seeing this.

Treatment

There are no medicines that provide a cure and as we have experienced in the past four and a half years, none seem to work to stop seizure activity for long.

As Sarah suffers many many types of seizures Professor Cross advised currently to treat the most difficult type and this is the ones for which we have now had regular emergency hospital visits for.
Sarah has 'Atypical absences seizures' that gradually lead to a 'non convulsive seizure status' a condition which causes Sarah to loose the ability to talk, walk or swallow.
We have battled this seizure pattern for nearly two years now with different drugs, and often  with awful side effects with each drug use.

We have now been given a new medicine for Sarah to try to fight this type of seizure, interestingly in all the years of drugs for epilepsy since early last century they are not much further forward in improving medicine for epilepsy.

It’s a reminder to us that the brain is the most complex organ for even the ablest person to comprehend.
Sarah has now been put on one of the oldest drugs(Ethusxomide) and we hope it will target these difficult seizures.We will know within 2 or 3 weeks so please pray it would be helpful including minimal side effects.

We are thank full for moving away from the last drug that left Sarah with very difficult behaviour problems impacting quite a bit on family  life!

Sarah still has to contend with night time tonic and tonic clonic seizures though. 
All these seizure types which 99% of the population do not realise exist as we didn't either 5 years ago.

Dr Cross gave a clear picture of Sarah’s brain tracing and in answer to prayer she is happy to give further guidance when needed. If necessary in future she will see Sarah again.
Since she is one of the leading UK epilepsy experts we feel we are receiving the best medical help we can for Sarah with her difficult condition.

Our aim with the help of some medicines is to give Sarah as good a quality of life against the ongoing seizures so balancing the use of antiepileptic drugs against there side effects. We have already tried so many.

We thank God for further help and direction for a clear diagnosis and the consultations with Professor Cross.