CASE IN PROGRESS • Last updated March 11, 2017
Hector is a little boy of Hispanic heritage born in June, 1998. He is the second child for his parents. His mother had a somewhat normal pregnancy, but at approximately 6½ months tested positive for tuberculosis. Because she was pregnant, she was unable to receive any medications for her condition. Mom had also had a bad bout of morning sickness during the first trimester, but she took no drugs for it.
Hector was carried for 39 weeks gestation. Labor started spontaneously, but after 6 hours had not progressed at all . At that time it was decided to deliver him by caesarian section. He was average for gestational size, and his Apgar scores were 8 at one minute and 9 at five minutes. He was doing very well and was sent home with his parents at the age of three days.
At the age of two weeks, Hector was becoming lethargic and his parents were concerned. They had left their home to take him to his doctor's appointment approximately 20 minutes away, when they realized he had stopped breathing. They were only minutes for their local community hospital, and took him immediately into the emergency room. At that time it was discovered that he was dehydrated and had gone into full cardiopulmonary arrest. He was given fluid s and his initial body chemistries revealed a sodium level of 104. At that time he was treated with sodium replacement fluids and transferred to the ICU of a regional hospital. After further studies he was diagnosed as having a form of adrenal hyperplasia with inadequate production of aldosterone and excessive production of androgen-like compounds. He was started on Florinef and Hydrocort immediately, and his blood chemistries normalized. Hector also received a cerebral ultrasound that was normal, although he had been in respiratory distress for several minutes. After two weeks he was sent home. His doctors gave his parents a cautionary prognosis related to the prolonged respiratory and then full cardio-respiratory arrest.
After his return home Hector began to have frequent blood chemistries done to make sure that all of his levels were correct. He would see his endocrinologist one month and then the next month see his cardiologist. Hector's parents were given a name for his condition - Congenital Adrenal Hyperplasia, and they were counseled that this is an autosomal recessive disorder with risk of recurrence in future pregnancies being 1 in 4. The general incidence of this condition among the Hispanic population is approximately 1/20,000. Hector's parents were told that he will probably have a prolonged, perhaps life-long, need for replacement of the hormones of the adrenal gland. Most children with this condition have a 21-hydroxylase deficiency.
While Hector was still hospitalized, he was checked on by a neurologist, who noted generally increased tone and opisthonic posturing and significant head lag. He was recommended to California Children's Services for an assessment, and it was noted that he had normal upper extremity tone and deep tendon reflexes and satisfactory head control but persistent arching of the back Hector also had somewhat persistent or excessive fisting of his hands, but when he was seen at the age of 2.5 months, he was beginning to bring his hands together. All of his skills at that time were found to be somewhat delayed, and it was recommended that he begin working with an infant stimulation program. The main concern at that time was about his long-range development in light of his medical problems.
When we began working with Hector we worked mainly on his gross motor skills. Because all of our therapy is play-based, this allowed us to also work on his cognitive, fine-motor, self-care and social emotional skills as well. He was beginning to use his hands even more, and to play with toys appropriately. It was somewhat difficult in the beginning for Hector to sit upright, but with work and practice, he was able to do so, and to begin to transition to crawling before his first birthday.
We were always conscious of Hector's physical health when working with him. Even more than usual, we would be careful to not go to his home if we had had a cold or any other illness. Hector was getting his blood pressure taken weekly, and still meeting regularly with his endocrinologist and cardiologist. He was on a blood pressure medicine that brought it into normal levels, and his parents were careful at all times of his sodium levels.
When Hector was a year old, he was assessed and found to be approximately 8 - 12 weeks behind in all areas. He was a beautiful and social little boy who enjoyed books and toys, especially trucks, very much. His family worked very hard with him to help him to improve every day, while remaining vigilant about his health.
During Hector's second year we continued to work with him on his physical development along with his cognitive and communication development. He began to crawl, and then to cruise along the furniture. He loved movement, and we had to work with him to sit and concentrate and keep quiet rather than climb and run as much as he wanted to on some days. Hector has a lovely and fun personality, and would always try hard to do everything we asked. His health continued to improve. He was still being monitored regularly for his blood pressure, and his doctors would adjust his medications as needed. As his blood pressure stabilized, he was able to cut back on his weekly trips to the doctor, and it became bi-weekly. When Hector was 17 months old, he was reassessed and was found to be approximately two months behind in all areas. It was also noted that in six months he had made six, and in some instances, seven months progress. His physical progress was so good that he was able to stop having physical therapy, and work only with a cognitive therapist. Because his parents are Spanish speaking, we did a lot of his therapy in Spanish. However, Hector has learned a lot of English words from his father and sister, who are bi-lingual (and from his English-speaking therapists!).
When Hector was 21 months old, we had him assessed for language development. He continued to make wonderful progress in all areas, but he remained a quiet little boy who had only a few words. He would, however, use signs for certain wants (for instance, he used the sign for "want/quiero" for any general request). He had some words, or rather approximations of words, and his articulation was not clear. His receptive language was very good, in fact, he could understand as much as any other child his age. However, his expressive language was at 14 months, which was a seven month delay.
At the age of two Hector was found to be age appropriate in most areas. When there was a delay, except for expressive langauge, it was only two to three months. Hector loved to play, could tower several blocks at a time, jump, kick a ball, do puzzles, loved to read books, and could feed himself well. His blood pressure had stabilized with daily medications to the point where he was only going for checkups every month or so. His doctors had no restrictions on him physically, but they continued to monitor his sodium intake, about which his parents were very careful. At this point he began working with a speech therapist along with his cognitive therapist.
Hector loved speech therapy. His cognitive therapist, who is bilingual, would work with Hector for a half hour before his speech therapist (who has a lot of Spanish) would come and they would all work together. Hector was particularly fond of certain things. He lives on a farm, so he loved to play with the farm animals and learn all of their names and sounds. He also loves trains, and often the train would go by when his therapists were there, and they would all stop what they were doing and go look at the train. Hector's mother has always read to her children, so books were always popular. But, we discovered, there was one thing that Hector doesn't like, and that is puppets. Eventually his therapists helped him get over his fear of them, and he would wear one on his hand, but it was a long road to get him to that place. Him mom couldn't figure out why he was frightened of them, and neither could we, but Hector, being Hector, overcame his fear.
Hector is now 30 months old. His speech therapist has found him to be age appropriate in his speech after working with him for less than one year (she has had wonderful family support, especially from Hector's older sister, who loves to give him "therapy"). In our area, it is common to have a meeting at this point with the local school district to discuss further options for a child when they turn three, but it is becoming more and more apparent that Hector will need no special support at that age, and will probably go on to regular preschool. His parents are anxious for this to happen (his Mom's only worry is his blood pressure medication). Hector's parents and doctors have helped us in every area, and it is wonderful to have a child make so much progress that they can graduate from our program.
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