Journal of Autism and Developmental Disorders, 2021
Siblings describe positive and negative aspects of autism and often assume lifelong support roles... more Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.
Journal of Developmental & Behavioral Pediatrics, 2011
Children with feeding problems often have multiple co-occurring medical and developmental conditi... more Children with feeding problems often have multiple co-occurring medical and developmental conditions; however, it is unknown whether patterns of comorbidity exist and whether they relate to important feeding-related health outcomes. The main objective of this study was to examine (1) the relationship between the number of medical and developmental comorbidities and important feeding-related health outcomes; (2) how various comorbidities interact and form empirically derived patterns; and (3) how empirically derived patterns of comorbidity relate to weight status, nutritional variety, and child and parent mealtime behavior problems. The medical records of 286 children (mean age = 35.56 months) seen at an outpatient feeding disorders clinic were reviewed. Child weight status, nutritional variety, and child and parent mealtime behavior problems were assessed using standardized measures. The lifetime occurrence of medical and developmental conditions was reliably coded. Empirically derived patterns of comorbidity were generated via latent class analyses. Latent class analyses generated 3 comorbidity patterns: "Behavioral" (58% of cases), "Developmentally Delayed" (37%), and "Autism Spectrum Disorder" (ASD, 5%). The Autism Spectrum Disorder group was found to have less nutritional variety compared to the Behavioral and Developmentally Delayed groups. No differences were found between groups in terms of percent ideal body weight, or severity of child or parent mealtime behavior problems. Multiple co-occurring conditions of children with feeding problems were empirically reduced to 3 patterns of comorbidities. Comorbidity patterns were largely unrelated to weight status and child or parent mealtime behavior problems. This suggests that medical and developmental conditions confer general, rather than specific, risk for feeding problems in children.
Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remissi... more Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn's disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R(2) = 0.395). It was also significantly correlated to adherence alone (R(2) = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (r(s)(9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.
BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-... more BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-17 years of age. The dosing, including induction, was found to be similar to adult dosing. This study also demonstrated an incidence of serious infections at 5.7%. The most prevalent adverse events were respiratory infections. In 2012, deBie et al. reviewed the literature on the use of anti-TNF medications in pediatric IBD and found adjustments in dosing between 27-49% of the time. The median time to dose adjustment was 6-9 months. After initiation of infliximab, intestinal surgery was performed in 25-35% of patients with Crohn’s disease. There are no reports on the use of infliximab in patients less than 6 years of age. METHODS: This was a descriptive, retrospective chart review of patients with IBD receiving infliximab as standard care for treatment of IBD from June 2002July 2012. RESULTS: Since 2002, our institution has diagnosed 790 patients with IBD; 50 patients (6%) were under 6 years of age at the time of diagnosis. 13 (26%) of these patients with IBD received infliximab when they were less than 6 years of age; 8 diagnosed with Crohn’s disease, 3 with UC, and 2 with indeterminant colitis. The age at diagnosis ranged from 11 months to 66 months with a mean of 37 months. 12 patients presented with bloody diarrhea. The age infliximab was initiated ranged from 15 months to 69 months with a mean of 46 months. 7 patients received monotherapy. Prior to 2008, infliximab was given in combination with mercaptopurine in one patient and azathioprine in 3 patients. Since 2008, methotrexate was given in combination with infliximab in two patients. The number of doses of infliximab given ranged from 2 to 38 with dosage ranges of 4.7 mg/kg to 13 mg/kg. The doses were adjusted in 6 patients, 4 with success. Two patients still on infliximab have not had dose adjustments due to high initial doses (9.3 mg/kg and 12.5 mg/kg). Seven patients had colectomies; two diagnosed with UC, two indeterminant colitis, two diagnosed with Crohn’s after an initial diagnosis of UC, and one patient with severe perianal Crohn’s disease. Six of the patients requiring colectomy were prior to 2008; only one out of 7 patients in the past 4 years required a colectomy. Two patients developed hives after 6-7 doses and one had an acute infusion reaction with facial swelling and desaturation. Other potential complications were limited to one patient with mycoplasma pneumonia, one with recurrent UTIs, and one with recurrent Clostridium difficile. The patient with severe perianal disease has since been diagnosed with IL10RA. CONCLUSION(S): Infliximab was used successfully in 6 out of 7 patients with IBD in the past 4 years. All six patients who received infliximab prior to 2008 went on to colectomy.
BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in... more BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in children. However, the impact of this increase on the secular trends of inpatient care and disease burden in hospitalized children with IBD is unknown. Therefore, the aims of this study were to evaluate the rate of hospitalization and disease behavior in hospitalized children with IBD in the United States from 2000 to 2009. METHODS: We used the U.S. Healthcare Cost and Utilization Project Kids’ Inpatient Database. Data were weighted to generate national-level estimates. RESULTS: We identified 61,779 cases of pediatric IBD during four triennial periods from 2000 to 2009. During the period of study, the rate of hospitalization of children with any diagnosis of IBD increased from 43.6 to 72.0 (cases per 10,000 total hospitalizations entered into the database per year; 2000 vs. 2009; P <0.001). Specifically, for Crohn’s disease (CD) the rate increased from 28.3 to 45.7 (P <0.001) and for ulcerative colitis (UC) 15.2 to 26.1 (P <0.001). There was an increasing trend in the rate of hospitalization in pediatric cases of IBD overall, and CD and UC individually (evaluation of entire time period, Cochran-Armitage test for trend, P <0.001 for each disease). The age distribution of hospitalized children with IBD did not change over the decade of study. Mortality (1 per 1,000 cases of IBD) and length of hospital stay (LOS; median, 4 days) remained constant. Hospitalization charges (adjusted for inflation) increased (median, $11,614 to $20,724, P <0.001). Significant increasing trends were found for comorbid disease burden and systemic complications (including electrolyte disturbances and anemia), and the need for blood transfusion and parenteral nutrition (P <0.001 for each). There, also, was an increase in the number of cases with fistulae, obstruction, and perianal disease (P <0.001 for each). In comparison of IBD and non-IBD cases, those with IBD had lower mortality, longer LOS, and higher charges (P <0.001 for each). Case-control matching demonstrated a lower risk of death (adjusted odds ratio, aOR 0.25, 95% CI, 0.20-0.31), longer LOS (aOR 2.48, 95% CI, 2.40-2.50), and higher charges (aOR 1.92, 95% CI, 1.88-1.96) in those with IBD. CONCLUSION(S): These results demonstrate an increasing trend in the number of pediatric cases with IBD admitted to the hospital from 2000 to 2009. Moreover, we found an increasing trend in disease-specific and systemic complications in these children along with an increasing cost of the hospital stay. These findings are consistent with earlier studies demonstrating that the epidemiology of pediatric IBD is changing as demonstrated by an increase in hospitalized cases. Also, these data suggest there has been an increase in the severity and frequency of complicated disease.
Developmental Medicine & Child Neurology, 2008
Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 1... more Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 15 controls less than or equal to 5 days O2) and 15 fullterm controls were evaluated at 10 to 12 years of age. BPD children weighted less than fullterm children and had smaller head circumferences than either preterm or fullterm controls. They also had significantly more neurological abnormality than both control groups. BPD children and preterm controls had lower WISC-R arithmetic scores and lower Beery VMI scores, as well as greater need of resources and special education compared with fullterm controls. BPD survivors at 10 to 12 years of age continue to manifest sequelae related to their early pulmonary disease.
A comprehensive model is presented that (a) highlights factors that have been implicated in the d... more A comprehensive model is presented that (a) highlights factors that have been implicated in the development and maintenance of feeding problems in both normal and clinical populations; and (b) provides a framework for the prevention, management, and treatment of feeding problems across the range of physically healthy children to children with acute and chronic illnesses. Relevant literatures and feeding models
No wonder you activities are, reading will be always needed. It is not only to fulfil the duties ... more No wonder you activities are, reading will be always needed. It is not only to fulfil the duties that you need to finish in deadline time. Reading will encourage your mind and thoughts. Of course, reading will greatly develop your experiences about everything. Reading brothers sisters and special needs information and activities for helping young siblings of children with chronic illnesses and developmental disabilities is also a way as one of the collective books that gives many advantages. The advantages are not only for you, but for the other peoples with those meaningful benefits.
Journal of Autism and Developmental Disorders, 2021
Siblings describe positive and negative aspects of autism and often assume lifelong support roles... more Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.
Journal of Developmental & Behavioral Pediatrics, 2011
Children with feeding problems often have multiple co-occurring medical and developmental conditi... more Children with feeding problems often have multiple co-occurring medical and developmental conditions; however, it is unknown whether patterns of comorbidity exist and whether they relate to important feeding-related health outcomes. The main objective of this study was to examine (1) the relationship between the number of medical and developmental comorbidities and important feeding-related health outcomes; (2) how various comorbidities interact and form empirically derived patterns; and (3) how empirically derived patterns of comorbidity relate to weight status, nutritional variety, and child and parent mealtime behavior problems. The medical records of 286 children (mean age = 35.56 months) seen at an outpatient feeding disorders clinic were reviewed. Child weight status, nutritional variety, and child and parent mealtime behavior problems were assessed using standardized measures. The lifetime occurrence of medical and developmental conditions was reliably coded. Empirically derived patterns of comorbidity were generated via latent class analyses. Latent class analyses generated 3 comorbidity patterns: &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Behavioral&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (58% of cases), &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Developmentally Delayed&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (37%), and &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;Autism Spectrum Disorder&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; (ASD, 5%). The Autism Spectrum Disorder group was found to have less nutritional variety compared to the Behavioral and Developmentally Delayed groups. No differences were found between groups in terms of percent ideal body weight, or severity of child or parent mealtime behavior problems. Multiple co-occurring conditions of children with feeding problems were empirically reduced to 3 patterns of comorbidities. Comorbidity patterns were largely unrelated to weight status and child or parent mealtime behavior problems. This suggests that medical and developmental conditions confer general, rather than specific, risk for feeding problems in children.
Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remissi... more Thiopurine immunosuppressants such as 6-mercaptopurine (6-MP) are widely used to maintain remission in children with both Crohn&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s disease and ulcerative colitis. Therapeutic efficacy is associated with higher red blood cell levels of the thiopurine metabolite 6-thioguanine (6-TGN). Studies in both children and adults have inexplicably failed to demonstrate a significant correlation between prescribed dose and level of 6-TGN. We aimed to quantify the relationship between 6-TGN levels and adherence. We used electronic monitoring devices to assess adherence in children and adolescents with inflammatory bowel diseases who were prescribed 6-MP. During 3230 days of monitoring in 19 subjects, adherence to 6-MP was 74.2%. Due to the generally low adherence to the prescribed dose of 6-MP, the 6-TGN level was not correlated with the prescribed dose. The 6-TGN level was significantly correlated with the adherence-adjusted dose (R(2) = 0.395). It was also significantly correlated to adherence alone (R(2) = 0.478). Adherence to 5-aminosalicylic acid and 6-MP were significantly positively correlated (r(s)(9) = 0.82, P = 0.00), and a significant relationship was found between 5-aminosalicylic acid adherence and 6-TGN levels independent of 6-MP adherence. Furthermore, low adherence to 6-MP was associated with increased likelihood of escalation of medical therapy. Red blood cell 6-TGN levels are strongly correlated with the dose, when the dose is actually taken. Lack of efficacy of thiopurines may often be the result of poor adherence. Novel ways of assessing and improving adherence are necessary. Future trials should assess adherence in study participants. Intake of 5-aminosalicylic acid positively influences 6-TGN levels.
BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-... more BACKGROUND: The REACH study helped determine the efficacy and safety of infliximab in patients 6-17 years of age. The dosing, including induction, was found to be similar to adult dosing. This study also demonstrated an incidence of serious infections at 5.7%. The most prevalent adverse events were respiratory infections. In 2012, deBie et al. reviewed the literature on the use of anti-TNF medications in pediatric IBD and found adjustments in dosing between 27-49% of the time. The median time to dose adjustment was 6-9 months. After initiation of infliximab, intestinal surgery was performed in 25-35% of patients with Crohn’s disease. There are no reports on the use of infliximab in patients less than 6 years of age. METHODS: This was a descriptive, retrospective chart review of patients with IBD receiving infliximab as standard care for treatment of IBD from June 2002July 2012. RESULTS: Since 2002, our institution has diagnosed 790 patients with IBD; 50 patients (6%) were under 6 years of age at the time of diagnosis. 13 (26%) of these patients with IBD received infliximab when they were less than 6 years of age; 8 diagnosed with Crohn’s disease, 3 with UC, and 2 with indeterminant colitis. The age at diagnosis ranged from 11 months to 66 months with a mean of 37 months. 12 patients presented with bloody diarrhea. The age infliximab was initiated ranged from 15 months to 69 months with a mean of 46 months. 7 patients received monotherapy. Prior to 2008, infliximab was given in combination with mercaptopurine in one patient and azathioprine in 3 patients. Since 2008, methotrexate was given in combination with infliximab in two patients. The number of doses of infliximab given ranged from 2 to 38 with dosage ranges of 4.7 mg/kg to 13 mg/kg. The doses were adjusted in 6 patients, 4 with success. Two patients still on infliximab have not had dose adjustments due to high initial doses (9.3 mg/kg and 12.5 mg/kg). Seven patients had colectomies; two diagnosed with UC, two indeterminant colitis, two diagnosed with Crohn’s after an initial diagnosis of UC, and one patient with severe perianal Crohn’s disease. Six of the patients requiring colectomy were prior to 2008; only one out of 7 patients in the past 4 years required a colectomy. Two patients developed hives after 6-7 doses and one had an acute infusion reaction with facial swelling and desaturation. Other potential complications were limited to one patient with mycoplasma pneumonia, one with recurrent UTIs, and one with recurrent Clostridium difficile. The patient with severe perianal disease has since been diagnosed with IL10RA. CONCLUSION(S): Infliximab was used successfully in 6 out of 7 patients with IBD in the past 4 years. All six patients who received infliximab prior to 2008 went on to colectomy.
BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in... more BACKGROUND: Recent studies suggest an increasing incidence of inflammatory bowel disease (IBD) in children. However, the impact of this increase on the secular trends of inpatient care and disease burden in hospitalized children with IBD is unknown. Therefore, the aims of this study were to evaluate the rate of hospitalization and disease behavior in hospitalized children with IBD in the United States from 2000 to 2009. METHODS: We used the U.S. Healthcare Cost and Utilization Project Kids’ Inpatient Database. Data were weighted to generate national-level estimates. RESULTS: We identified 61,779 cases of pediatric IBD during four triennial periods from 2000 to 2009. During the period of study, the rate of hospitalization of children with any diagnosis of IBD increased from 43.6 to 72.0 (cases per 10,000 total hospitalizations entered into the database per year; 2000 vs. 2009; P <0.001). Specifically, for Crohn’s disease (CD) the rate increased from 28.3 to 45.7 (P <0.001) and for ulcerative colitis (UC) 15.2 to 26.1 (P <0.001). There was an increasing trend in the rate of hospitalization in pediatric cases of IBD overall, and CD and UC individually (evaluation of entire time period, Cochran-Armitage test for trend, P <0.001 for each disease). The age distribution of hospitalized children with IBD did not change over the decade of study. Mortality (1 per 1,000 cases of IBD) and length of hospital stay (LOS; median, 4 days) remained constant. Hospitalization charges (adjusted for inflation) increased (median, $11,614 to $20,724, P <0.001). Significant increasing trends were found for comorbid disease burden and systemic complications (including electrolyte disturbances and anemia), and the need for blood transfusion and parenteral nutrition (P <0.001 for each). There, also, was an increase in the number of cases with fistulae, obstruction, and perianal disease (P <0.001 for each). In comparison of IBD and non-IBD cases, those with IBD had lower mortality, longer LOS, and higher charges (P <0.001 for each). Case-control matching demonstrated a lower risk of death (adjusted odds ratio, aOR 0.25, 95% CI, 0.20-0.31), longer LOS (aOR 2.48, 95% CI, 2.40-2.50), and higher charges (aOR 1.92, 95% CI, 1.88-1.96) in those with IBD. CONCLUSION(S): These results demonstrate an increasing trend in the number of pediatric cases with IBD admitted to the hospital from 2000 to 2009. Moreover, we found an increasing trend in disease-specific and systemic complications in these children along with an increasing cost of the hospital stay. These findings are consistent with earlier studies demonstrating that the epidemiology of pediatric IBD is changing as demonstrated by an increase in hospitalized cases. Also, these data suggest there has been an increase in the severity and frequency of complicated disease.
Developmental Medicine & Child Neurology, 2008
Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 1... more Thirty low-birthweight (less than 1500g) infants (15 with bronchopulmonary dysplasia (BPD), and 15 controls less than or equal to 5 days O2) and 15 fullterm controls were evaluated at 10 to 12 years of age. BPD children weighted less than fullterm children and had smaller head circumferences than either preterm or fullterm controls. They also had significantly more neurological abnormality than both control groups. BPD children and preterm controls had lower WISC-R arithmetic scores and lower Beery VMI scores, as well as greater need of resources and special education compared with fullterm controls. BPD survivors at 10 to 12 years of age continue to manifest sequelae related to their early pulmonary disease.
A comprehensive model is presented that (a) highlights factors that have been implicated in the d... more A comprehensive model is presented that (a) highlights factors that have been implicated in the development and maintenance of feeding problems in both normal and clinical populations; and (b) provides a framework for the prevention, management, and treatment of feeding problems across the range of physically healthy children to children with acute and chronic illnesses. Relevant literatures and feeding models
No wonder you activities are, reading will be always needed. It is not only to fulfil the duties ... more No wonder you activities are, reading will be always needed. It is not only to fulfil the duties that you need to finish in deadline time. Reading will encourage your mind and thoughts. Of course, reading will greatly develop your experiences about everything. Reading brothers sisters and special needs information and activities for helping young siblings of children with chronic illnesses and developmental disabilities is also a way as one of the collective books that gives many advantages. The advantages are not only for you, but for the other peoples with those meaningful benefits.
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Papers by Debra Lobato