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August 16, 2002
May 2001
I had taken Jaida for her speech evaluation a week before I went back to work. The director of the speech clinic suggested a hearing test and we did that at the end of the month. Jaida had not had any recurrent ear infections yet so the test was normal. The speech clinic director kept asking me if Jaida ever rocked or flapped her hands in a compulsive way. I said no, and she kept saying something about echolalia. Later, I started researching autism and discovered that was the term for the constant repetition of others’ words. That was my first clue about what everyone else was suspecting and not telling me. Also at the end of the May, Jarod went for his 2 month appointment with Dr. W. It was a repeat of the 1 month scenario, complete with her lackadaisical attitude over his breathing and skin inflammation. I got a prescription for Elocon skin cream and some samples of Alimentum formula in case I had to supplement. I knew it was smelly and unpalatable so I vowed to pump enough at work to avoid using it. I had an appointment with my own regular doctor and I had to start a new blood pressure medicine. My high blood pressure was the reason for my induction and after the birth it was still up. They only discharged me because I agreed to take medicine until my six week checkup. My OB was not sure of what to do when it was stll too high in spite of the meds, so he told me to see my regular doctor. After my doctor consulted with Jarod’s doctor and they agreed it was safe, I started a drug called Tiazac.
June 2001
A week or so after Jarod’s appointment he began to exhibit some strange and scary behavior. I would put him down for a nap only to have him wake up screaming before I could get the crib rail up. The nights got to be horrible. He would be on and off the breast from 8:00 until 11:00 every night. He would scream and I would offer the breast. He would suck a few times, arch his back and pull away. All the while, he was still latched on firmly. I did have a mildly overactive letdown but I was taking steps to help control it. He would finally fall asleep from exhaustion around 11:30 PM and sleep until 4:00 AM. The last straw was an entire weekend where he had his first nursing strike. I was so upset and confused. When I called his doctor, they said she was on vacation but I could see one of the partners. I was not fond of Dr. O. but I was desperate. I told her that I believed he had reflux. I tried to describe his symptoms. She tuned me out and after listening to his chest prescribed breathing treatments every four hours. I left the office feeling defeated and belittled.
After a repeat of the nursing strike and a few days of refusing bottles too, I took him back to the doctor. Again, we had to see Dr. O and I was not happy. Dr. O chastised me for not giving the nebulizer treatments enough time to work. She said it would take about a month for me to see some improvement. Dr. O told me to just follow up with Dr. W at his four month. I took that to mean, “Don’t come back again” so I didn’t. To say I was livid is an understatement. The next day, I called another pediatrician. Dr. S was a gray-haired man in his fifties. He was a little intimidating but at least he agreed with my diagnosis. He suggested thickening the expressed milk with rice cereal until it was the consistency of tooth paste and doses of adult Mylanta before feeding. I had already tried Mylanta before this so I knew it would work. I was apprehensive about the cereal. All commercial baby cereal contains soy oil and having tried soy formula already with no success (and lots of projectile vomiting) I was doubtful. Jarod did not tolerate it very well so I stopped. About 8 days later we went back to Dr. S and got prescriptions for Zantac and Reglan when Jarod started to regress. Dr. S wanted to rule out trachiomalacia so he sent us to an ear, nose and throat doctor. My poor baby had a laryngoscopy at three months old. Our next visit was to an allergist for an assessment of his eczema. Dr. J said it was common and we talked about foods to avoid. After getting negatives on some skin prick tests, she advised me to “go ahead and eat whatever you want”. Boy was that wrong!
July 2001
Jaida came down with another ear infection. I took her to Dr. S and he commented on her speech delay during the exam. I told him about the speech evaluation and he asked if I had a report from them. I said I had not received anything yet. He asked if I had been offered any suggestions. I told him they had referred me to the special education division of our county school system. Due to the state education system being in proration, we could net get an appointment for testing until September at the earliest. He made some notes and wrote us a prescription. Towards the end of the month, Jarod had his 4 month and Jaida had a follow up for her ears on the same day. Jarod got four shots; Jaida got another prescription since her ears were still infected. I got interrogated about the milk thickening and how often he was spitting up or having wet burps. I decided to see a specialist for better medicine. The Reglan was causing restlessness and fussiness. The Zantac tasted and smelled like liquid hell and it was a 20 minute process to get it into him. I got Dr. S’s sympathetic receptionist to fax an appointment request and Jarod’s chart to the gastrointerologist (GI) clinic at Children’s Hospital in Birmingham. I felt I had to take matters into my own hands.
I took Jaida to a clinic that specialized in diagnosing behavioral and developmental disorders. They officially diagnosed her with Autistic Spectrum Disorder and our lives changed forever.
August 2001
On August 7, we took Jarod to Birmingham and we finally got results. Dr. Cavendar was a portly fellow with a jolly disposition. He prescribed Prilosec and Bethanecol. He gave us a list of do’s and don’ts and sent us on our way. We had to wait nearly three hours to get into an exam room but it was worth it. Dr. Cavendar wanted us to come back in six weeks for an upper GI and follow up appointment. I agreed eagerly. I just wanted my baby well. On the way home, I called to check on Jaida. My mom was going to pick her up since we wouldn’t get home until early evening. The daycare had forgotten to give her the sack lunch I sent. They also had been switching her from room to room since her favorite teacher had left. It seemed like nobody knew how to handle her. I decided that her days at that cattle farm were over. After I found her in the 18 month old room one day, I had already begun the search for a new facility. We also took Jaida to the pediatric neurologist for the first time. He asked lots of questions and scheduled her for an EEG. I didn’t think it was necessary since I had never seen her have a seizure. It was at the urging of the director of the clinic that did her ASD diagnosis that I went in the first place. epilepsy is common among children with autism. So I made preparations for the test and waited for the day to come.
On the day of the EEG, I had to wash Jaida’s hair and dry it without any oil and leave it loose. She looked like bride of Frankenstein or Angela Davis from the seventies. All the office staff smiled knowingly when they saw her. Dr. Corbier’s EEG nurse, Martha, put a stretchy hat with electrodes already attached on Jaida and tried to squish all her hair under it. Next, she used a gigantic syringe filled with conducting gel and filled the holes all over the hat. Jaida flinched after each hole was done because Martha had to scratch her scalp with the blunt tip of the syringe. After she finished, Martha turned out the lights and we waited for Jaida to fall asleep. Martha made some clicks with her mouse as the brainwave pattern scrolled across the screen. After 30 minutes, she turned on the lights and unhooked the cap. I tried to clean off Jaida’s head with a wet towel, make her hair look presentable and we left. I was a little unnerved by all the twitching Jaida had done in her sleep but I was not terribly worried. You’re supposed to move in your sleep right?
Until next time,
Kim, Jaida & Jarod
[[In real time, we are going to Chattanooga this weekend. We'll be back on Sunday so everybody have a good weekend!]]
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