Treatment of IS

Infantile Spasms are the nastiest seizures. They steal your child from you. I dreaded putting Grace to sleep because I knew that shortly after awakening, she would begin seizing. I would hold her as she had her cluster of seizures and hug her and talk her through them. Sometimes we were in public and if I held her close no one could tell that anything was wrong. We just happened to be scheduled for an MRI a few days after Grace began having IS seizures-we had made the appointment at our first neuro visit a couple of months earlier. We met the doctor prior to the MRI and he agreed to do a spinal tap on Grace while she was under anesthesia to check for a certain metabolic disorder we had read about recently. He was the most awesome doctor- he sat on the board at the children's hospital and we caught him right in the middle of a week of inspections and meetings. We were walking with him to the room where they would put Grace under anesthesia and we happened upon a pack of suited hospital big-wigs on their way to another meeting. They inquired of our doc if he was on his way to the meeting as well. He replied that no, he was being a doctor right now. I loved that. I held Grace as they gave her the sedation and in only a few seconds she was as limp as a noodle. She had the spinal tap and MRI and all went well. When we received the results, they were normal except that her brain was a bit small for her age. One thing that IS does is show that development in the brain has stopped and this is evidenced by the head stopping growing. During the couple of weeks Grace was having her seizures, her head circumference was measured several times and it wasn't until the seizures stopped that it grew at all. Pretty scary when you think about it.

Grace's spinal tap test came back normal as well as several other metabolic and genetic tests for abnormalities. It seemed as though we had a mystery as to what caused these seizures. IS very rarely occurs in typical children. Most often it is a secondary condition brought on by some other health or developmental issue. I knew that Grace had a developmental issue of some kind, but we were in the dark as to whether it was genetic, metabolic, or just something that happened in utero. I read a statistic in my researching that said that only 50% of children with developmental delay ever get a diagnosis as to what caused it. When visiting with a metabolic/genetic specialist once he told me that we have only scraped the top of the myriad of genetic and metabolic disorders out there. There are thousands more we haven't even identified yet. I was floored by that. To some parents of these mystery children it is a constant battle and search to find what their child has-many will not solve that mystery. Jumping forward in time to now when she is five, I am content with accepting Grace as she is and I am not burdened with the unsolved diagnosis issue. If I hear of other tests, we will get them. Until then, Grace is just Grace.

Grace began steroid shots ten days after she began having IS. The steroid of choice in this country at least is called ACTH. When I picked it up at the pharmacy, I looked at the receipt. I paid 40.00 for two vials-the price before insurance: more than 2500.00. That might have even been per vial. I can't remember now. I was just forwarded an email recently stating that the price of ACTH is going up to more than 5 times that amount. Thank heaven for insurance. Grace began her shots on a Monday. It was the first day of kindergarten for my oldest child McKay. We took her to school and I left to the hospital. McKay lost her first tooth while this was going on as well. I should have been enjoying these momentous firsts with her, but I was steeped in grief. The nurse at the neuros office gave Grace her first shot. I would be getting a home health care nurse to my home for either two or three more injections (again I can't remember which) to teach me how to administer them and then it would be up to me. Our insurance didn't cover any more than that. I was scared to death. I hate needles. The nurse taught me how to give an intramuscular injection in her leg. She taught me how to put some numbing cream on first for about 15 minutes per my request. I felt much better about poking her if her skin was numb. I actually did a pretty good job for an amateur, but one time (I hate to even share this) I accidentally went too far to an angle and the needle came out the side of her leg. I about died-and I never did that again.

By the time Grace got her second shot, her spasms had disappeared completely. One other thing I read in my research was that stopping IS within the first month was crucial to getting the best outcome. I was thrilled that I didn't have to see those nasty seizures anymore. Unfortunately, not all parents get these results from ACTH or even other treatments, and they have to have their child on the shots longer or try several things before the seizures stop. I felt so thankful that we didn't have to go through that. ACTH has terrible side effects. Long term use can lead to serious problems. The worst side effect to me was the fact that it causes one to withdraw. No eye contact, no smiles, just a moaning blob. I missed Grace while she was in the fog of ACTH. I missed her smile and her laugh. She wouldn't look me in the eye. She also gained weight in her face and got what is called "moon face" from the swelling caused by the steroid. She would sit in her car seat on the floor and moan all day. I hated it. One time, we were having dinner at Dallas' cousin's house with a lot of family. She was on the floor in her car seat moaning away. Someone said something funny and we all laughed. Suddenly, Grace laughed too. Just a sweet giggle. Now that she is older, she does that a lot. She likes the sound of laughter. We were amazed to hear it that day though, and it seemed like a sign that our girl was on her way back.

Our neuro gave us great news after a follow-up eeg. We had just gotten the best case scenario for IS. Her eeg showed no more hyppsarythmia and her head began to grow again. We were so relieved. We were now able to wean her off of the shots. The day of her last shot I felt like celebrating. She stayed on topomax for a little while longer, but we were soon able to take her off of that as well.

Slowly, Grace began to come back to us. Her smiles were so welcome. This was a nightmare I will never forget and 2003 was one of the worst years of my life. By the time December came, I was ready for a new beginning and a road to healing and acceptance.

Next time....the years of being stagnant.