Ibrahim (ABBU) is our oldest child and was born in 2003. He did all the normal things until the age of five and even started Kindergarten. It was right after starting school, we were told that he was having attention difficulty. So we started him on some ADHD Meds with the help of a Neurologist back in November 2008. We noticed right away that he was not his usual self, so some medications were changed and he still was not his usual self. In April 2009, while playing outside with his mom and brother, something unusual happened–he started twitching and fell down hard on the floor. At that time his mother didn’t realize Abbu had his first seizure. When going back to the Neurologist to explain what had happened, he requested an EEG for the first time, and within a week we were told that our son has Epilepsy. He was started on his first of many Epileptic medications from there onwards. By then his life had completely taken a turn for the worst.
Things were progressing in such a fast pace that our son started losing a lot of skills he had accumulated over the course of his previous five years. He was having lots of myoclonic seizures and first lost the ability to stand on his feet. All the while, he was slowly losing his vocabulary, speech and many things that he had learned. After the first MRI, we were told that it indicated that he had Cerebellar Atrophy and that might be the cause to his condition, then we were told there might be a number of different things which might cause this unexplained condition. While all this was going on, his seizures were never controlled, even after trying many different medications.
In Early 2013, we finally got the answer we were waiting for. Ibrahim was diagnosed with a RARE disorder called “BATTEN DIESEASE”. It is said to be a fatal disorder that has no cure. After this diagnosis, he was being hospitalized on a regular basis for uncontrolled seizures and of different kinds where he would stop breathing. In August of 2013, he was in the hospital for three weeks where he had a seizure that lasted over 74 minutes, even after he was given two doses of Diastat, a rescue medication that should stop seizures. We were told that this might be the progression of his condition which was causing more intense seizures. We were discharged from that visit with 7 different medication scripts, mostly to be given 3 times a day.
We were very exhausted looking to find any kind of relief for our son. In Early August 2013, we somehow found out that there was something available that might help our son. It was the CBD oil taken by Charlotte Figi, a young girl from Colorado. We immediately pursued this option, and found out that it was not available in Texas. So, we planned on dropping everything we had going on in Texas and moved to Colorado as soon as we could.
Since, starting CBD oil at the end of 2013, we are pleased to report that Ibrahim has had great seizure control. He had ZERO hospital visits for seizures in the whole year of 2014. His Quality of life has improved so tremendously that it is hard to put it into words. In addition, his pharmaceutical medications have been weaned and reduced to just two very low doses.
Even though it is hard to fathom what he had been through and what he is going through, we will take seizure freedom in anyway it presents itself. The unfortunate thing is that, while enjoying his seizure freedom in Colorado, we are distanced away from our families and friends in Texas. We are unable to even visit with our son due to the fear of persecution. It should NOT be this way.
On behalf of our son Ibrahim, we request for the Texas Legislature to please look into this matter to provide some comfort to the families who are going through incredibly tough times with different seizure disorders. We were fortunate enough to drop everything and move out of state. Others do not have the same option. Please look into the CBD OIL treatment option, and take action to provide another option to the families in need.