I had a normal pregnancy. I had morning sickness for 4 ½ months. Around my seventh month, I noticed the baby’s movement slowed down to almost nothing. I had many ultrasounds and monitors at least once a week if not more, and everything checked out fine. Towards the end of my pregnancy, I was very uncomfortable like most women. Three weeks before my daughter was born, I was having contractions every now and then that were about 8 minutes apart. My water broke at 5:33am on January 3, 2002, only 3 days before my due date. My labor was progressing, and the baby and I were doing well until 3pm when the baby started showing signs of distress. Her oxygen level and heart rate were dipping with every contraction. This went on for several hours. During this time, the doctors had tried and were unable to put a different type of monitor on the baby. Around 8:00 pm I was ready to start pushing. I was checked for a final time but was told I needed an emergency C-section. In the operating room I was put under anesthesia because my epidural failed. My daughter Skylar was born at 8:33pm, weighting 7lbs, 2oz., and was 20” long. She was tightly tangled in her umbilical cord which caused purple lines across her chest and neck. Other than her traumatic entry into the world, she was healthy. Sky grew normally and walked at 11 months old. About 1 week after Sky started walking, the “episodes” began. These episodes consist of her left foot tucked behind her right knee, almost in the shape of the number 4. Her legs are locked together so tightly that they couldn’t be pulled apart without hurting her. Her father and I ignored them at first, thinking that maybe she had gas pains since it was just her lower body. The episodes are very painful for her, though. When one of these episodes is about to happen, Sky stops whatever she is doing and lays down on the floor in anticipation of the episode. The episodes last anywhere from seconds to minutes, with the longest being almost 2 hours! Again, these happen anywhere, anytime, and in front of anyone. Sky has had these outside playing with some children. For example, she was playing ball with some kids and just lay down on the pavement. This incident was brought to her doctor’s attention, who responded, “This would be why her back hurts.” They would also occur when I would lay her down to change her diaper. After about 3 weeks, we set up an appointment with a neurologist at CCMC. On the first appointment, Sky had a telemetry test, and the results were negative. The doctor had thought the episodes may have been absent seizures, so he prescribed Tegretol. This medication worked for as short time then it stopped. Then we tried Phenobarbitol. This didn’t work. The doctor then gave us Neurontin along with the Phenobarbitol to try together. Sky was unable to tolerate these medications, showing signs of being over medicated. Next we tried Periactin. From April through September we fought with this medication. Like the others this one worked too and then would stop, so we would up the dosage. Frustration set in, and her father and I decided to take her off all medication, which took until the end of October. The episodes returned full force. Around December the neurologist stated that it was time to explore other options and referred us to a behavioral specialist. The neurologist’s diagnosis went from Seizures to Dystonia vs. Self-stimulation. Our appointment was in March, and within 5 minutes of observation and discussion, the behavioral specialist said “Absolutely not self-stimulation.” From that appointment we returned to the neurologist with some confidence. Again anything we said in defense of our child was disregarded. At this point I had asked the doctor to order an MRI of her back because she would complain during and after episodes that her back hurt. He refused but agreed to an MRI of her head. Again the results were negative. The follow-up visit he then prescribed Dilantin. This medication worked very well. She was having about 3 episodes a day instead of 30. At our next appointment, the neurologist stated that there was no need for her to be medicated, but if I wanted to continue the medication, I could. As a “last option” he offered to try a new medication, Tegretol, which we had already tried with no results. In return he offered us a spinal tap and/or an MRI of her back. Very angry, I left eh office and started the search for a second opinion. I found a doctor in Yale who would not see us until he read Skylar’s records. When we met with the doctor, we didn’t get his opinion, we got an opinion of someone else’s opinion. Also this doctor never even did his own examination. He stated that Skylars’s condition “is weird. I have never seen anything like this. Take her to a child Psychiatrist and learn to live with it.” At this, my family and I were frustrated and angry with traditional healthcare. We decided to pursue other options. Sky’s aunt had studied massage therapy and took an anatomy and physiology class, taught by Dr. Steve Judson. She thought that if anyone could help us or at least point u in the right direction, it would be him. Sky has been seeing Dr. Steve for almost 2 months now. In this small amount of time, he has made a world of difference in the quality of my child’s life. After seeing Dr. Steve for about 2 weeks, Sky went from not sleeping through the night due to the episodes to sleeping through the entire night. The episodes have become slim to none. Sky is currently on no medications. It has been a wonderful experience so far going to Dr. Steve, but also getting to know our daughter again. All those medications changed her so much. For Sky, she has learned that touch isn’t bad, and that going to the doctor doesn’t have to be a bad experience. On the days that we don’t see Dr. Steve, Sky asks, “Can we go to Dr. Steve?” and cries to go to his office. Our family is so grateful to Dr. Steve for changing our outlook of Sky’s future and also for helping her be a regular 2 ½ year old. Kate, age 22 Skylar, age 2 ½ |
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