Thursday, March 27, 2014
This is our daughter, Annie. Annie started having Infantile Spasms, a devastating form of childhood epilepsy, when she was six months old. The constant seizure activity that occurred in her brain during this time of infancy has left her with many physical and intellectual challenges, as well as autistic-like behaviors. At nine years old, she has now gradually developed into, what doctors refer to as, intractable generalized epilepsy. Annie has tried over 12 different anti-epileptic medications, with very little success. Many of the FDA approved medications have had terrible side effects such as extreme stomach discomfort, excessive weight loss, excessive weight gain, drowsiness, hallucinations, loss of coordination, loss of peripheral vision, behavior problems, liver damage and becoming addicted to the medication even though it is ineffective for seizure control. She was also placed on the very strict Ketogenic Diet for 2 years to try to control her seizures, which was also unsuccessful. Two years ago, while still in search of the “perfect medicine” for Annie, she FINALLY got about 10 months of seizure-free days. She was able to enjoy her days and experience a much better quality of life. She was able to participate in her school goals more cooperatively and with much more success and noted progress. She was much more alert and her thoughts were much more organized, as was evident in her activity level. She was able to participate in self-feeding as well as having some bladder control. Unfortunately, the “perfect medicine” for Annie gave her a severe case of pancreatitis and we spent 5 days at the Penn State Hershey Medical Center. Since the side effect of the Depakote posed a greater risk to Annie’s health, the medicine was immediately discontinued and so her seizures returned. This past summer she was on 3 different seizure medications simultaneously in an attempt to gain some seizure control, but with no success. She is currently having anywhere from 5-30 absent seizures a day, along with a tonic-clonic seizure 1-2 times a week. When Annie has a tonic-clonic seizure, she will go into a convulsion and stop breathing anywhere from 1 to 3 minutes. Following this kind of seizure Annie needs anywhere from 3-4 hours to recover. Annie continues to be challenged with this cycle once a week. The 10 seizure-free months of Annie’s life that we were able to experience allowed us to see Annie making progress and gains, developmentally and physically. These were the best 10 months of her life. We have exhausted all the options for Annie. Our current hope is the CBD oil, which isn’t currently available in Pennsylvania, will give Annie and many other young children an opportunity. There has been great success in other states and many trials that are currently underway. We continue to communicate with a few families that have left residency in Pennsylvania and re established residency in other states, where their children can seek this treatment. The good news is that they are having great success; the bad news is they cannot come back to Pennsylvania under our current laws. We are hopeful that Pennsylvania will make the right decision, with guidance and regulation, in order to care for these many children that are suffering. Please give them the opportunity they deserve. We continue to hope and pray every day, that someday Annie can experience more seizure-free days. This will lead to a better quality of life for her, which is all any parent wants for their child.
UPDATE March, 2014
Since the hearing, Annie has had 10 tonic-clonic seizures. Leading up to the tonic-clonic seizures, she experiences 5-20 absence seizures in the 3-4 days before. That may sound a little confusing, but in total, she has had up to 150 seizure episodes. Her bigger seizures are always scary as we never know when or where they are going to happen. Annie is fortunate that she is physically able to move about independently, although her risk of injury from a seizure increases. Last week, she stood up to get another toy from her toy box and that is when her seizure happened. She started to fall straight down, like a falling tree, and I rushed to break her fall, being across the room when I saw this start to happen. Luckily, I was able to reach her just in time to push her face to the side, as she continued to fall, and she only had a minor cut on her chin. Had I been ONE SECOND later to reach her, I have no doubt that we would have ended up in the ER with a much more serious injury to her beautiful face. (It should be noted that I was simply trying to put dinner on the table when this took place.) The week before last, I jumped in the bathtub, fully clothed, when she started to seize, and used all my strength to pull a 50 lb. slippery, wet and convulsing Annie out of the tub. The week before THAT she had a seizure while we were having dinner. This is particularly dangerous, as the food needs to be cleared from her mouth, but since she is convulsing, this is hard to accomplish without Annie choking and myself or my husband getting bitten. (I could go on and on.) Each week brings a different episode. As we are out of medications to try, there have been no improvements in this pattern, if anything, her bigger seizures seem to be coming a little closer together. Throughout this pattern, we try to remain hopeful and optimistic that Pennsylvania will pass Senate Bill 1182 so that Annie and other Pennsylvanians will be able to have safe access to medical cannabis therapy. We love living in Pennsylvania and do not want to be forced to move to another state to give Annie the best quality of life.