48-Hour EEG by Dr. Diane Stein: Day 1

My son made it through the first night wearing the EEG wires glued to his head, leading to a monitor in a small pack on his back, without ripping everything off. He has been wearing boxing gloves and being watched by me, my daughter, or my friend without interruption so we can make sure he keeps everything on and we get a good test. This is the midpoint of my husband's two-week business trip to Europe so I don't know what I'd do without the help of my daughter and friends. Yesterday at Dr. Stein's office my son was so ballistic that it took four of us to hold him still while the technician attached the wires and wrapped his head in gauze. He had very little appetite yesterday and took no supplements, only his prescription meds. It is still very hot and humid and he loved being right in front of the fan. Here is a noteworthy thing: Except for the mega tantrum in the doctor's office, he has had very, very little self-injurious behavior. He has been very peaceful. I think that he really likes the weight of the boxing gloves and the tightness of the gauze around his head and wrapped under his chin. He also likes the undivided attention. I had a really informative phone appointment with Dr. Stein last night. She believes that there are much better seizure meds than Keppra that wouldn't have such mood-altering side effects. I'm so excited to get the data from this EEG and discuss it with her two weeks from now. She is SO thorough, compassionate, and great at explaining things. She was really interested in everything about him and was really excited to hear about the development and talking we are seeing since he started folinic acid. She said that these were the kinds of things other parents have reported. She was also very respectful of the fact that we are using an alternative medicine provider as our autism recovery specialist. A note about this: Since they were gluing things to his head, and I have been well taught by our naturopath that anything that touches the skin enters the body, I asked for samples of each product that I could take to her and have her make homeopathics from them to counteract any toxins. Instead of telling me that this was weird, Brad (Dr. Stein's right-hand man and an epilepsy parent himself) asked me to have her call him and make arrangements for her to make remedies for future patients. He said that there are always a few people who are sensitive to this and giving them this option will allow them to feel O.K. about having an EEG. He said, "Even if it helps only one person, it will be worth it." I slept beside my son last night and he only woke up once, at 4:00am, and was back to sleep by 5:00. He was in a really good mood. Today I will try to see if he wants to eat more--I think the gauze chin strap makes it uncomfortable--and try to get him to take more of his supplements, but the most important thing is to keep the EEG equipment on him. My daughter and I will take turns watching him so I can eat and take a shower, and friends from church are taking him for a walk and a drive from 11:00-2:30. First thing tomorrow morning we can pull everything off his head and wash the glue out of his hair. Since he needs a haircut, anyway, another friend from church and my daughter and I are going to buzz his head. Then we will go to church at 11:00 for the yearly children's program, and hopefully he will feel comfortable going up to the front while a classmate reads his part for him in front of the whole congregation. There will be lots of songs which he usually likes to take part in as well. Tomorrow afternoon I am supposed to call the manager of Dr. Stein's office and tell him when I'm leaving my town so I can meet him.........in the parking lot of the Inn-N-Out in Mission Viejo (!) and return the portable EEG equipment. He says he lives ten minutes from there and likes to do this for the San Diego patients so we don't have to drive to Irvine on Monday morning. This is the kind of personal touch I have come to expect from our naturopath but I have never experienced this kind of treatment from a doctor's office before. Yesterday I almost cried after it was all over, not because it was traumatic, but because everyone was so kind.

Manure

Saturday night I hit a very low point after an exciting and hopeful week. I got the test results that my son has Cerebral Folate Deficiency, which is very good and hopeful news because it's very treatable! I also got all my ducks in a row for new supplements for him from a Compounding Pharmacy, and my insurance is even paying for it. And I had a very uplifting, encouraging, hopeful appointment with my son's naturopath. But along with this I had to deal with some conflict with his new teacher at school, including having to schedule an emergency IEP,  his seemingly non-stop attempts at self-injury, hot, humid weather, a cold for me, and the continuing intense job of his care. On Saturday night, my son did self-injury attempt #41 of the day and I was just DONE. I wondered again if God had forgotten about me. As I did the dishes I sang the hymn, "Where Can I Turn for Peace?" to myself. http://www.youtube.com/watch?v=IyA-r83vtcQ The second time through, I replaced the word, "Gethsemane" with "Humanity." Where can I turn for peace? Where is my solace When other sources cease to make me whole? When with a wounded heart, anger, or malice, I draw myself apart, Searching my soul? Where, when my aching grows, Where, when I languish, Where, in my need to know, where can I run? Where is the quiet hand to calm my anguish? Who, who can understand? He, only One. He answers privately, Reaches my reaching In my Gethsemane, Savior and Friend. Gentle the peace he finds for my beseeching. Constant he is and kind, Love without end. Text: Emma Lou Thayne, b. 1924. © 1973 IRI Music: Joleen G. Meredith, b. 1935. © 1973 IRI As I walked into the chapel for church the next morning, there was one of my oldest and dearest friends, who I hadn't seen in five years, here on vacation. As I hugged her I sobbed, and as I sat in front of the congregation getting ready to lead the music, I thought about manure. I thought about how I have used lots of manure to get the soil ready for planting in my beautiful vegetable garden, and that frankly, manure is the best stuff for making soil rich. I realized that the manure I have been going through has given me a "broken heart and a contrite spirit", and has made the soil of my heart open and receptive to all of the beautiful growth that God is trying to plant in me.