In 2003 my daughters and I had moved across country to Northern California and because of certain circumstances we were in a "safe location" in San Francisco. On a Saturday morning I woke up first and then my youngest woke up because she had an accident in bed, well I thought nothing of it and we went ahead and stripped the bed and I put her in the bathtub to clean up and so we can get her dressed. This was just a normal morning, she was up and bathed and I was getting her dressed, she laid on my bed so I could put her socks on and then it happened, her whole body was stiff and shaking, she was not breathing normally I knew it was a seizure and later I learned it is called a Grand Mal seizure. It took a second for me register it and then I moved her to the floor and put her on her side and I stuck my finger in her mouth. <side note> Later I learned that it is not necessary to put anything in the mouth of someone having a seizure. I got some help and at the same time I woke my other daughter and someone had called for the ambulance and it seemed like hours, the EMTs had arrived. Honestly I had never been so scared in my life, she finally regained consciousness on the way to the hospital scared and crying, I held her hand and reassured her that I was there and she was going to be alright. We get to UCSF (University of California San Francisco) hospital and she was coming out of it and starting to act like herself again, I was relieved to say the least. So as in all emergency rooms, once she was stable we waited, at least it was a private room, and waited after about two hours a nurse came in and informed me that they were going to do an MRI on her to see if they can find a cause of the seizure. The orderly came and got us and wheeled her in her gurney to the hallway outside of the MRI room and left us there by ourselves. Well then it happened again, she had another Grand Mal seizure right there in the hallway and we were all alone so I proceeded to knock on any door close to me, finally the MRI tech called for the emergency nurse and by the time she showed up the seizure was over. Soon after her seizure subsided the tech and nurse took us into the MRI room, that is where I got a bit more information, immediately after a grand mal seizure you loose the ability to speak, or recognize your immediate surroundings, this does go away soon afterwards. We waited for a few minutes and really let her come out of it and get back to herself and then they started the MRI. I was nervous because what if something major was wrong that we did not know about or what if I had done something during my pregnancy to cause this, so with fear and guilt I prayed that all would come out okay. After the MRI she was admitted into the pediatric wing of the hospital, it was brightly colored and had wonderfully friendly nurses. Unknown to me the MRI results were being reviewed by the Neurologist and her assigned doctor, thankfully it came out completely normal, so there were no obvious causes for her to have had a seizure. The doctor came into her room and talked to her and I just to ask about her medical history, if she was a normal pregnancy, any spells of her loosing time, this one he had to explain. So as he explained what those kind of seizure looks like, and they are not as obvious as the grand mal seizure, they are more along the lines of blanking out and loosing time, completely unaware of what happened during the seizure. As the doctor explained this to me I had to admit that she had had these type of episodes, I just never thought anything about it when it happened. I mean I have heard of a grand mal seizure and even had seen what one looked like on television, but I had never heard of a petit mal seizure. The doctors ran test after test and still could not find the cause of the seizure and the last test they wanted to perform was a spinal tap to see if she had meningitis, so outwardly I was calm and comforting on the inside I was praying that this was not the cause. Because she was a little one at the time they gave her an anesthetic, but instead of relaxing her into sleep she had the opposite reaction and got very hyper, apparently this happens to some children when given anesthesia. Since she did not show any symptoms of meningitis her doctor decided against trying to do the spinal tap again. All in all he decided that there was no physical cause of the seizures and he diagnosed her with Primary Generalized Epilepsy (PGE), also called Idiopathic Generalized Epilepsy (IGE), refers to an epilepsy syndrome of idiopathic or unknown cause. An idiopathic disease is a “primary” or “intrinsic” disorder that cannot be attributed to a known underlying condition. So, while other types of epilepsy may be caused by a brain tumor, stroke, or other neurological disorder, idiopathic epilepsy is a primary brain disorder of unknown cause. In fact, most idiopathic epilepsy syndromes are presumed to be due to a genetic cause, but in most cases the specific genetic defect is not known and a family history of epilepsy may not be present. Once seizures start, usually in adolescence, most patients need medication treatment for life to prevent seizure recurrence. People with PGE syndromes usually have normal development and intelligence.
So here we are with a diagnosis and we are, what I find out, at the beginning of a marathon, not a sprint. The first medication they put her one was Dilantin with this medication she would have had to have blood drawn every three months to check on her liver function. I asked to switch her to a different medication and one that did not have that side effect so they put her on Depokote, does not disturb liver function but it can make you sterile if not watched carefully and it has a steroid component, which makes the taker gain weight. Well you know I was not having that. Her neurologist and I discussed a new medication that had great effect at controlling seizures and with none of the side effects of the others she had taken. Dr. Shanahan prescribed Lamictal and we were excited about this new medication however her doctor did let me know to watch out for little bumps that may appear all over her body. She was on lamictal for a month and then she started scratching and scratching, and the little bumps I had been warned about made their appearance, which is an indicator of an allergic reaction. This was strike three with the medications and I was very concerned that we would not find one that would control her seizures and not have the dangerous side effects of all the others medications. We scheduled an emergency appointment to see her neurologist at Children's Hospital in Oakland, admittedly Dr. Shanahan was just as concerned about finding the correct medication for her as I was, that is when she told me about Keppra which had no drug interaction problems, did not affect the liver or other organs and was excellent for controlling seizures. I prayed that this will be the one so I started her on this new medication and my prayers were answered, no seizures, no crazy side effects and most important, she felt better. I felt like I could finally breath a sigh of relief and so could she we were happy to have finally found the one medication that would give her the seizure control she needed. She was doing so well on the new medication that she did not have to go back to the neurologist for six months and that would be just for a check up.
I could go into what life was like for her outside of the medical, how when people found out she has epilepsy they treat her like she has the IQ of an infant. Or they are scared to be around her even though the entire time they had known her she never had a seizure. Or in the case of her fourth grade teacher who called Child Protection Services and reported that she was being neglected at home because she had this condition, just because she did not want her in her classroom. Thankfully I was working closely with the school principle so all the medical things she was going through was discussed in confidence with her principal. The caseworker from Child Protection Services was very kind and she talked to both my children and immediately let me know that she could see that they were both healthy, happy and well taken care of and she was going to state that in her report and then she would close the case.
I will share with you what a beautiful young woman she is growing into and how dedicated she is to doing well in school and going on to college. I can also share with you how wonderfully she sings and the close loving friends she has made even with this diagnosis. She is special and not because of her epilepsy but because she has weathered a storm that no child should have to go through and has come through it beautifully. She does keep it a secret but not because she is ashamed, but because the way people react to it.
Visit these websites to learn a bit more about epilepsy.
www.epilepsyfoundation.org
epilepsy.med.nyu.edu
