Diagnosis
It was 2:00 a.m. the day after our daughter, Alison, was born. A nurse awakened me to tell me that something was wrong with my baby. She said that it seemed as though Alison had some respiratory problems and that blood tests would need to be taken.
About 6:00 a.m., the nurse witnessed Alison having a seizure. I had no idea what a seizure was, but was to witness many of them later -- her arms and legs would stiffen, her head would turn to one side, her face would usually turn red and she would become blue around the mouth. The seizures were frightening.
Our pediatrician, Dr. Thomas Jones, talked with us about the tests that they were going to do on Alison. They included a spinal tap, an EEG, and a CT scan. The results were negative, and it was decided to transfer her to the Neonatal Intensive Care Unit (NICU) in a Lafayette (a 30 minute drive) hospital.
We were able to call and check on her condition whenever we desired, but that still did not alleviate our loneliness and fear. Being in a hospital after delivery with no baby to see or hold was draining, but I was thankful that at least my baby was alive.
Alison was observed in the NICU, but neither the neonatologist nor the nurses saw her having a seizure, and she was discharged two days later. We were delighted to have her at home. Our delight was soon marred by fear when Alison started having seizures one day later. She was re-admitted to the pediatric wing of the same Lafayette hospital so that I could stay with her. What a long night! Alison had seizure after seizure. I slept very little for fear of her having more seizures.
Additional tests were done the next day, and vitamins and medications were started. Her muscle tone was poor and she was very limp. Soon the seizures stopped, and we were relieved. We thought the nightmare was over, when in reality, it had only just begun.
We stayed in the hospital a few more days until Alison seemed to be seizure free and showed improvement. She was discharged on phenobarbital and we headed home with our baby only to see her begin to experience seizures again on our way home. We drove straight to Dr. Jones' office, and he made arrangements for us to take her to a New Orleans NICU (a 2 ½ hour drive). By this time, Alison was eight days old.
We stayed at the hospital over the weekend. Alison was losing weight and had to be put on an I.V. There was nothing we could really do for her except to let her know that we loved her. We decided the best thing for us to do was to leave her in the doctor's care and go home. I needed to regain my strength (I had a c-section to deliver her) for her return home. My heart ached and I cried most of the way home.
I called the hospital 2-3 times daily to check on her condition. My mother and I went to New Orleans a few days later to see her. My husband and I went the next weekend. Her I.V. had been removed and we could feed her. She was even gaining weight, but she still continued to have seizures. The doctors could not determine the cause. All the tests came back negative, except the EEG. It was showing abnormal brain activity.
After two weeks in NICU, Alison was discharged. The doctors told us that it was better for her to be at home than in the hospital. At least at home she could be loved. They told us that she would probably not live a normal live, but neglected to explain what they meant, and we did not know what to expect.
Alison was finally at home at the age of three weeks, and we were excited to have her with us. She had spent only one night at home before this. We loved her; we played with her; and we were up with her at night when she had seizures (she had a distinct cry when she had a seizure). One week later her condition worsened.
We rushed her to the emergency room at 3:30 a.m. when she was 4 ½ weeks old. We didn't know how much more we could take or how much more was going to happen. The pediatrician on call said that this was something that we had to accept and that she might not survive. It seemed as though he was trying to take away our hope, but I held on to my faith in God because I know that He knows what is best for all of us. Alison was admitted to the hospital to be monitored, and Dr. Jones and his partners made arrangements (at our request) to admit her to a hospital in Houston, TX (a 4 hour drive).
We stayed in Houston eight days. Once again all test were negative. The cause of her seizures could not be determined. Pediatricians, geneticists, neurologists, and ophthalmologists saw Alison. They all suspected the same thing -- infantile spasms. An EEG was done and showed only that she had tonic seizures; however the doctors were certain that she would develop infantile spasms in time. The doctors also believed that Alison was having seizures in utero.
We were home from Houston about a week when we noticed jerky movements in Alison, a sign of infantile spasms (she was 7 weeks old). We made arrangements to return to Houston, and an EEG confirmed that she did indeed have infantile spasms. All sorts of questions and feelings were going through my mind. I experienced anger, frustration, fear, sadness -- but God was with me. I knew He would guide and help me and that He knows what is best for all of us. He had His reason for this and I must trust Him.
Little is really known about infantile spasms and the doctors do not know how this will affect our daughter, but I have read as much as I can find and have asked as many questions as I can about it. The spasms look like startles or jerky movements and are sometimes mistaken for colic because of the jerky movements. Prognosis is often poor for these infants resulting in delayed development and/or more often, mental disabilities. The spasms usually happen in one out of 4000-6000 births and often the cause is never known. It usually affects children around 6-8 months of age. Infantile spasms is the worst form of seizures in infants and usually disappears by the age of 3 years, only to be replaced by other types of seizures. Many develop eye or vision problems and some cases of infantile spasms can be fatal. It is difficult to control with the usual anti-convulsant medications. A cortisone called ACTH, given by injection, sometimes are effective in controlling infantile spasms.
We learned how to give the injections and Alison was involved in a study of how ACTH affects infantile spasms. She was randomized for a high dosage of ACTH for 12 weeks versus a low dosage for 6 weeks. We were told the possible side effects of ACTH -- high blood pressure, swelling with weight gain, low electrolyte levels, and lowered immune system to name a few. She would have to see Dr. Jones every week to monitor her blood pressure and weight. Alison could not be around others because of her lowered immune system.
After one dose of ACTH, the infantile spasms stopped; after 4 does the tonic seizures stopped. We were elated! The 12 weeks ahead were long, but well worth it. We watched Alison stop most movements due to excessive weight gain. Her weight increased from 10 pounds to 20 pounds in that 12 week period. Her blood pressure was constantly high, and at one time her potassium level was low. She even broke out with acne, another side effect of ACTH. She was ill a few times, but not seriously and she came through like a trooper. She was 4 ½ months when we stopped giving her the ACTH, and she had done beautifully. God was taking care of our baby.
Alison is enrolled in an early intervention program to help with her delayed development and she is making new progress every day. She is on a maintenance dose of Phenobarbital. We won't be going back to Houston because she will be starting special clinics here at home. She makes us laugh and smile and gives us so much joy. She's a beautiful baby in every aspect.
A wonderful lady told me that having a special child means changing your expectations and accepting every good thing as it comes. How right she is. We don't know what the future holds for her and our family. We are expecting another baby when Alison is a year old and we know that Alison will touch that baby's life as much as she has touched ours. We love her for who she is and feel that God has blessed us with her. Our lives are in God's hand. He will lead the way.
NOTE: I wrote this story when Alison was less than a year old. Alison is now 23 years old. I had a baby boy, named Dustin, when Alison was 12 ½ months old. Dustin is an amazing brother. Alison also has an grown older half brother, Chris, who now lives out of state.
Alison was weaned off Phenobarbital when she was 2 ½ years old after an EEG showed no abnormal activity. She started taking Phenobarbital again when she was 6 ½ years old. At that time she would wake up and cry often throughout the night. An EEG revealed that she had abnormal brain activity, primarily during her sleep, which would wake her up. Alison had a seizure when she was 3 ½ years after a fall, and again when she was 6 years old, after a fall.
Alison learned to walk when she was 6 years old, although her walking is unsteady. Although non-verbal, she communicates with some informal gestures.