On Oct. 1, 2002, Grace was born. I was induced at 38 1/2 wks and being that she was our third child, I felt so prepared and knowledgable. I only had a couple of hours after the pitocin was started until she was born. She was as perfect and as sweet as can be. She nursed well, slept well, and was a good natured baby. I remember enjoying every moment of my 2 days in the hospital with her. We brought her home and she did very well for the first few months. She smiled at 6 weeks, and even laughed for the first time @ two months. I remember thinking that she was very advanced for doing that! She pushed up on her arms on time and was very aware and engaged. Because of this, however, I failed to notice the things she didn't do on time. I threw away the month-by-month developmental guide they give you at the hospital because I figured I knew it all by now.
At her four month appt., she passed her exam quite well. Now though, when I look back, I realize that she was already showing her delays by not rolling over or grasping at objects. At her 6 month check-up, it suddenly dawned on me during the exam that she was not even close to sitting up unassisted yet. The doctor didn't seem worried though, and told me just to take her home and work on it with her. I began trying to get her to grasp and hold objects and to work on her sitting. She kept her hands up in fists by her shoulders and arched her back while stiffening out straight-making it almost impossible to help her to sit.
One day when Grace was 7 1/2 months old, I got a phone call from a friend from church. We talked about some other things and then almost in passing, she asked me if Grace was sitting up yet. I told her that I was working with her on it. She said that she didn't want to worry me, but she had noticed in church that Grace was clenching her fists up high and acting stiff. She suggested that I get Grace into an early intervention therapy program. She worked in early intervention with kids with hearing impairments and she gave me a phone number to call. She said that we could get therapy to help Grace catch up. Then I noticed a hint of something behind the casual suggestion and I asked her point blank what she thought might be wrong with Grace. What she said next changed our lives forever. She said that she didn't want to worry me, but with the stiffness she was displaying she could have mild cerebral palsy. She said that she might only need special shoes or some therapy for a while until she catches up.
I really took the news quite well initially. My mother in law commented later that when I told her I seemed so matter of fact about it and without any hint of emotion. I think I was in shock. Suddenly, one day within a week or two, I just lost it. My good friend from high school called me at that very moment. I remember sobbing into the phone: "We think that Grace might have cerebral palsy!". My husband and one of our friends from church gave Grace a priesthood blessing. A few days later at church our friend commented to me that he felt very peaceful that we would be ok while he was giving Grace her blessing with Dallas. I recall feeling a sense of peace also. I received comfort from reading the scriptures as well. As I thumbed through them, I found passage after passage about peace and being thankful. I realized that we were in for a journey, and that we needed to count our blessings along the way in order to receive the peace we sought. This has proven true again and again.
We got Grace into early intervention therapy, and I took Grace to see our family practice doctor again. I began explaining to him what had happened over the past two months and just broke down again. He is a wonderful doctor and calmly referred me to an excellent pediatric neurologist at the local childrens' hospital. I remember wanting to go to this neuro and have him reassure me that everything would be ok. Dallas and I both went to the appt., and after a brief exam, he told us that he thought on a scale of 1 to 10, Grace was probably a 2 or 3 and that she would probably be able to catch up with the proper therapy. We left that appt. on cloud nine. We went out to celebrate on the way home at our favorite restaurant.
I began taking Grace to a friend who was a chiropractor. He heard our story and thought that regular adjustments would help her. I remember at this time, the thing that bothered me the most is that she would tip over even when sitting in her stroller or highchair. It was so depressing to me that my 8 month old needed to be propped up. I had hope at this time though, and was looking forward to getting Grace caught up. Then one night in August of 2003, everything changed dramatically again. This time it was much worse.
We had gone out to dinner with just Grace one Friday night. She was so sweet sitting there in her carseat while we ate, and I felt so happy and hopeful that evening. We got our kids into bed and went to sleep. When Grace awoke in the middle of the night, I picked her up and began to nurse her back to sleep. Suddenly, she began making movements as if she were startling every minute or two. She would put out her arms in front of her and jump as if someone had slammed a door. I suddenly remembered something the neuro had said to us in his office: sometimes startling can be a seizure. At that moment I knew that she was having seizures. I really wasn't terribly worried, I figured I would call the doc on Monday and that we would get them taken care of.
She only had the seizures right after she woke up and for only a few minutes. They weren't even violent or strong. I remember calling my chiro friend to ask him what he knew about seizures and he just said that adjustments do help to stop seizures in many cases. I called the nurse at the neuros office on Monday at 8 am and left a message. I got a return call rather quickly. She asked for a more detailed description of what was happening, and said she would ask the doc and call me back. Within another short period the doctor himself called me. He asked for another detailed description. When I finished I will never forget what he said. He simply said "Oh nuts" and I knew from the tone in his voice that it wasn't what he wanted to hear.
He informed me that it sounded like Grace was having a type of seizure called infantile spasms. He needed to do and eeg to confirm what he suspected. At first he could only get me in later in the week, but he sounded worried and called back with an appt. on Wednesday. Dallas and I took Grace in for the eeg. It was so sad to see her head all wrapped up with those wires coming out the top of the bandage. It was an hour for the eeg and we were taken directly in to see the doctor as soon as we were finished. Little did I know that that rarely happens-especially on such short notice. She didn't have any seizures during the eeg, but while they were taking her vitals in the nurses station after the procedure, she began having a cluster. I told the nurse to call the doc so he could see them. He came running and when he saw them, he just nodded and said that they were most definitely seizures. When we met with him in the office, he confirmed his suspicion of infantile spasms by showing us a particular wave pattern on her eeg called a hyppsarythmia (sp?). Hers was faint, and not as noticable as other kids he had seen with IS, but it was definitely there.
He told us that the gold standard for treating IS was a steroid called ACTH. It had to be special ordered and administered by intramuscular injection. He also started her on a sprinkle seizure med called topomax. We had to wait until Monday for the ACTH to be in and picked up so we could start it. It was so somber in that room. The doctor said that his hopes for her future had suddenly become much more bleak. He told us that he unfortunately could not tell us what to expect for her future, he just didn't have a crystal ball. I cried while holding her and saying-"but she's just so smart"...over and over. The nurse very quietly told us that she was sorry and that this type of seizure is the worst kind to have. I remember coming back to my in laws house where our older two were and breaking the news.
Our doc told us to go on the internet and read about IS. That was both the best and the worst idea. The best because I learned what we were really up against, but the worst because it was the most depressing internet search of my life. Sunday was my birthday. It was also the most depressing birthday of my life. I got up the courage to search on the internet that morning. When I read that IS has a very poor outcome and that 75-80% of children who get it end up moderately to severely mentally retarded, I began shaking and crying. I just wept and wept. I also learned that if the seizures are not stopped within the first month, that you can almost guarantee the worst outcome. Basically, these seizures are a sign that development in the brain has completely stopped. I couldn't believe that this was happening to us. We went over to my husband's parents for a birthday dinner and presents. I couldn't even eat a piece of cake and barely touched my dinner. Seriously, it was the saddest birthday ever.
I will continue her story next time. My fingers and eyes are tired. This is a story that may take a few posts to tell. Next time....treatment of IS.
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