James had his 1st seizure when he was 1 month old. The NICU nurses said he started to bicycle his legs and when the nurse tried to stop his legs, he was trying to push past.
James was put onto Phenobarbital James was admitted into the hospital Nov 2009 with pneumonia and when we were being discharged I saw this strange "ab crunch" type movement. I didn't think much of it.
Fast froward to January 2010, we went into the hospital thinking he is having some type of GI issues because because these movements are starting to look like gas pains. We caught these ab crunches on video and showed the doctors. He was diagnosed with Infantile Spasms (http://www.infantilespasmsinfo.org/ )
February 2010 James started ACTH ( http://www.acthar.com/mspatient/about) injections. I had to give him a shot into his thigh every day for 6 weeks. ACTH is one of the front line medications for Infantile Spasms.
April 2010 we finished ACTH and the doctor wanted him to start Vigabatrin, but we decided to start with Keppra instead. Vigabatrin has some crazy side effects such a blindness and we were not ready just yet for that.
We started to wean the Phenobarbital and upped the Keppra but also added Clonazepam to James medications. James is not taking 3 anti-seizure medications.
June 2010, continued the Phenobarbital wean but added Topamax
July 2010, we finally finished the Phenobarbital!!
September 2010, we finally gave in and started Vigabatrin (Sabril). James had to start to be watched by a ophthalmologist to make sure there was no eye damage.
November 2010, we finished taking Vigabatrin and Keppra because the seizures were still happening. James could easily have up to 100 seizures a day. Some big, others little
December 2010, we started a new med called Banzel. It has been around for years
February 2011, we started Vimpat.. if you are keeping score, James is now on 4 anti-seizure drugs!
April 2011, we started talking about reducing vimpat and start the Ketogenic diet... We met with some doctors down at Rush
May 2011, we finished Vimpat to get ready for diet
May 23rd, we started the Ketogenic diet. James has to have a special formula called Keto Cal that we made every morning. ( http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/index.cfm)
July 2011, this is what James seizures have turned into
October 2011, we finished with the diet because James was losing to much weight and the seizures were still very present!
March 2012, we started a new drug called Clobazam or Onfi
May 2012, James had a VEEG to see if he can have brain suergry and the results showed us he is not a candidate but might be able to get a VNS. The results showed us on top of those 30+ seizures we are seeing, James brain is constantly seizing
July 2012, we finished Clonezpam and upped his dose of Onfi.
September 23rd, James went in to get a VNS placed into his left chest. (http://us.cyberonics.com/en/) This device will give his brain a little "shock" every 3 minutes to keep his brain active.
October 2012, we did turn off his VNS because we were not sure if it was increasing secretions.
February 2013, James VNS is still off but we have not see any big visual seizures but James is starting to cry out loud for no reason. This has been going on for about a month. We are scheduling another VEEG for March
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