16 through 19 years of age

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  These years were very trying on Kiera as well as us, as her parents. Seizure medications were just not the answer, we were on all the medications out there under the sun and even tried some that she was on before. I can count 19 seizure medications so far that have really not helped slow her seizures, forget about trying to stop them!
  Her Epileptologist wanted to do a surgery called the Corpus Colostomy surgery. Basically it is 'Split Brain' surgery. This surgery sounded very promising for Kiera because her seizures now are classified as Complex Partial secondary to generalized~ meaning that her seizures start out on one side of her brain then quickly generalize to the whole brain, which then is described as a Generalized Tonic Clonic (old term: Grand Mall)
  This surgery consist of 2 separate surgeries, the first is done in the frontal lobe, the Doctors go in and severe the nerves from one side of the brain from the other.
  The second half of this surgery is to severe the last 2/3rds of the nerves that go down the back of the head, this is done so that the seizures no longer can generalize.
  We were terrified as Kiera's parents... Brain Surgery... How can we put her through this?
  Kiera did GREAT, she came out of this with minimal pain, she was actually laughing the 2nd time around, she's such a trooper!
  We were told that the success with this surgery is determined by a 80% reduction of seizures. We were so hopeful, but unfortunately Kiera started to seize on day 5 after the surgery. The Epileptologist said that her brain has really learned to seize over the years, so a new pathway has been rebuilt, it is now under the corpus, an area that we can not reach.
  Kiera had developed a sever Red Dye allergy prior (at 8 years old) so this limited the medications she could be on for seizures. We were at the point of no return so the only way to go was to wait for new medications to come down the pike.
  And a new med did, it is called Lyrica. It was the ONLY med that really did ANYTHING throughout all these years!
  All medications before this did nothing, or at the least helped for a very short while then just quit. We really had no faith in medications for our dear daughter anymore.
  But Lyrica did help, and we would like to think that it still is helping to keep the seizures down.
  After Kiera had the CC surgery she did start to have Generalized seizures again, they were increasing both in severity and duration so we felt that we needed to try something new (or at least, again)
  We made an appointment with her Epileptologist and said that we wanted to try the keto diet again, he was very reluctant, Kiera's health was already not good. We were at our last hope, but he listened to us and agreed that we had nothing to lose so from there we had a start date for the diet.
  In 2005, Kiera's geneticist sent a blood sample down to California, at the Clinical Molecular Diagnostic Laboratory. They were testing for a mutation in the STK9 gene, this is the EXACT gene as the CDKL-5, same gene, different name. (no wonder we are all so confused about genetics!)
  They were looking for any mutations on this gene, the results came back with 'No DNA sequence alteration detected' the problem was that genetic testing was not advanced enough at that time to know how to test for this condition. The CDKL-5 mutation was discovered just a year prior in the UK. Kiera was tested for any deletions on the STK9 (CDKL-5) gene before the test was available in the US, that would have shown this mutation. So close, but still too far away.
  
  Behavoirs I stoped, The long crying spells, chewing on my right pointer finger
  
• Surgeries, Corpus Colosotomy


• Started the ketogenetic diet for the 2nd time


• Genetic test done to find a mutation on the STK9 gene (same as the CDKL-5 gene) results negitive.