Case in Progress
Andres - 1
Andres is a little boy who was born on April 1, 1997. He was due to be born in June of 1997, however, complications during his mother's pregnancy resulted in a pre-term delivery.
Mom's health at the time of conception was good and her prenatal care began at two months gestation. She used prenatal vitamins, and a course of antibiotics for a urinary tract infection. At four months gestation the AFP study was conducted with normal results. An ultrasound at six months showed a small fetal size for gestational age. There were increasing concerns with a series of ultrasounds over the third trimester which showed poor fetal growth, (interuterine growth retardation). There was also oligohydramnios noted.
It was decided to deliver Andres by emergency caesarian section at 32 weeks gestation. His birth weight was 901 kg. He developed respiratory distress and was ventilated and progressed to endotracheal intubation for several days. He also had umbilical vein and umbilical artery lines. It was noted that he had a transient heart murmur considered to be possible peripheral pulmonary stenosis which evidently cleared on its own.
There was also mild transient hypobilirubinemia and hypoglycemia. Andres was given several days of phototherapy. He also had a series of antibiotics for three days until all cultures were negative. There was also a mild transient thrombocytopenia. Andres had FISH studies which ruled out trisomy 18. He also did not have TORCH titers. Andres was released from the hospital May 18, 1997.
When Andres was originally seen by the Regional Center physician several unusual characteristics were noted. First, Andres presented as small for his age in both stature and weight (although it was noted that neither of his parents are very tall people). It was noted that he had several café au lait skin spots on various parts of his body. It was discovered that his mother and a maternal cousin also have a significant amount of these same café au lait spots. The physician determined that Andres has a mild form of von Recklinghausen's Disease (Neurofibromatosis type 1).
It was recommended that the size and number of his café au lait spots be documented by his pediatrician for the next several years, although at this early date, the doctor did not feel that a CT or MRI brain scan would be appropriate - although it might become an important matter in future.
Andres' overall skills at this initial meeting were determined to be at approximately 1.5 - 2 months, at the age of 6 months, 4 months adjusted. It was determined that Andres was a child at risk for developmental problems due to his diagnosis of interuterine growth retardation, premature birth, and Neurofibromatosis type 1. Early intervention services were authorized following this examination.
At his first early intervention assessment, Andres was found to have delays in gross motor skills, cognitive skills, and pre-language skills. Although he was too young to speak, all children begin to acquire communication skills immediately after birth. Physical therapy was initiated on a weekly basis, and then occupational therapy begun when Andres stamina improved .
At the age of one year, Andres had achieved the following goals: He could manipulate objects with his fingers (fine motor); would look towards and adjust reach as necessary to obtain an object (fine motor/visual); could sit steady indefinitely (gross motor); and was beginning to go from floor to sit and back and also creep in some fashion for mobility. At this time more extensive goals were set to encourage growth in all areas of development.
During the next six months Andres worked with a physical therapist and a child education therapist each weekly. Andres' family speaks only Spanish, which necessitated a translator for almost all of our home visits. However, his parents worked very closely with us and followed our suggestions very well.
A significant difficulty during this time was the family living situation. They had to move from their home without warning, missed several weeks of therapy, and eventually found a home in a small trailer. The new home presented a concern for a couple of reasons; The first reason was, heat, or lack of. Andres showed a susceptibility towards colds and other upper respiratory problems, and the lack of heat in the winter was worrisome. The second concern was adequate space for Andres to be mobile. Andres was very close to walking and there really wasn't a lot of room to walk. During the summer and fall months when it was warm, we conducted intervention sessions outside where there was plenty of room to work and to play.
During the six months period between the ages of 12 and 18 months, Andres learned to walk - not only on a hard surface but also on grass and uneven surfaces. This is a great benefit to any child, because it allows different sensory influences into the feet. It is also wonderful for their balance and their ability to learn higher level coordination skills.
Andres could climb into and out of a small chair, tower two cubes, put a peg in a board, release nine cubes into a cup, and remove the cover of a small box. His developmental levels at the age of 18 months were as follows:
Our targeted areas for the next six month period, between 18 and 24 months, were self-care and communication, since these were his areas most significant delay. We of course continued to build on all other areas of development.
At 20 months of age Andres had his first seizure. He had had a respiratory illness, where his fever went up quite a bit over a short period of time. He was showing signs of seizure activity, and his parents took him to the emergency room. He was hospitalized overnight and prescribed phenobarbital.
When his congestion cleared, his parents took him to a pediatric neurologist, who concurred that he had had a seizure. It was still unclear if the seizure was related to his diagnosis of Neurofibromatosis or if it was a febrile seizure.
The phenobarbital was making Andres so sleepy that he was unable to stay awake for more than short periods everyday. He was barely eating any more, so it was decided to take him off the anti-seizure medicine and observe what happened. At this time there was no more seizure activity noted and Andres went back to his normal self.
To focus on self-care skill acquisition the Occupational Therapist re-joined the team of interventionist along with a Speech/Language Therapist. It was recommended to the family that Andres be taken off the bottle, as it interfered wtih his self care and speech skills. He no longer needed the bottle for nutrition and his family agreed.
Andres' gains overall during this six month period were a little slower going - whether due to the seizure, or perhaps the skills were more difficult or that he had learned to walk and mobility was his main focus. Andres did not want to sit, attend to tasks, and work on tasks requiring eye hand coordination.
However, at the age of two he had met 80% of the goals that had been set, and his developmental levels were as follows:
Andres and his family were again forced to move. This new home allowed for more room and a fenced yard. Andres' mother began to provide childcare a few other children, which allowed a great deal of social interaction for Andres. In this new situation we began to see some wonderful changes - particularly in communication skills and cognitive skills.
Another change at this time was to have his intervention provided in his native language, Spanish. For Andres and his mother, this seemed to made a big difference at this time in their lives. This child education specialist replaced the occupational therapist and also worked very closely with the speech/language therapist.
At the end of six months of these therapists working with Andres, it was noted by the speech/language therapist that Andres had made a gain of 11 months receptively and 13 months expressively. He had blossomed from an inwardly-focused child without words or signs and without the skills to engage in reciprocal play to a child excited to interact, to use eye contact, to take turns with cues and to communicate during therapy and in his activities of daily living. Andres had begun to feed himself with a spoon, and had discarded the bottle completely.
When his 30 months review was held, we invited a preschool specialist to meet with us and Andres' family to discuss pre-school options for when he turned three years old. Andres' current abilities had just been re-assessed. It was our recommendation that instead of a special day class for him through the special education department, Head Start with additional speech was probably the best option. This was quite a milestone for a little boy, who only a year before had been uncommunicative and very delayed in all areas.
During the last six months that Andres was part of our program, we worked closely with him on school preparation - matching, sorting, cutting with a child's scissors and using crayons. Additionally, work on paying attention to task, following directions, and listening skills. Speech therapy continued and was very successful.
His mother even began to work on toilet training, as Andres had learned how to pull up and pull down his pants (with a little help!).
Shortly before Andres turned three there were some outside stressors on the family, including that Andres had some more seizure activity. It was noted that his mother had not been able to take him to see the neurologist for over a year. At this time it was stressed as being of first importance. Andres had also had some ear infections, and it was noted that he needed to have his hearing checked and possibly PE tubes inserted.
It is always important to remember with any child that when there are stressors in the home, the child feels that stress and reacts to it, most often by either being sick more often or by their behaviors.
Andres is now three and will be beginning his school career. We have high hopes for his continued development in his new school setting, particularly in the area of speech.
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