Background. Behavioral reports were gathered at ages 19 and 37 months on average (which followed reconstructive surgery for patients), using the CBCL and, for those children in child care or preschool, the Caregiver-Teacher Report Form (CTRF).15. Author information: (1)Department of Plastic Surgery and Reconstructive Surgery, Erasmus Medical Center-Sophia Children's Hospital, Rotterdam, the Netherlands. Reefhuis J, Honein MA, Schieve LA, Rasmussen SA, and the National Birth Defects Prevention Study. A total problem scale provides a summary score for all problems endorsed. Infants diagnosed with SSC typically undergo cranial vault surgery in the first year of life, both to minimize skull deformation and to reduce the risk of co-occurring medical problems such as elevated intracranial pressure (ICP) or ocular misalignment.1, 2 SSC has been associated with mild delays in development and specific learning disorders in childhood.2–4 Although clinical impressions have also suggested elevated rates of mild to moderate behavior problems in this population, there is limited empirical data, with only four previous studies on this topic to our knowledge. Plast Reconstr Surg. Hum Reprod. Few studies of craniosynostosis have included measures of children’s behavior and social–emotional characteristics. Plast Reconstr Surg. CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS; births 1997-2011), to understand the causes of and risks for birth defects, such as craniosynostosis. Twelve years ago, Cindy and Todd learned their 3-month-old daughter, Olivia, had craniosynostosis, a condition in which one or more of the special joints in a baby’s skull (sutures) grow together (fuse) earlier than normal. The research is significant for parents like Cindy and Todd Bush. These problems are not 100% unique to craniosynostosis but they are found in a very high incidence in the craniosynostosis kids compared to the regular population. Craniosynostosis occurs in approximately one in 1700-250… An advantage of GEE, relative to analysis of variance, is that GEE retains subjects who have missing data at one of the two time points. Speech, cognitive, and behavioral outcomes in nonsyndromic craniosynostosis. Single-suture craniosynostosis (SSC) is the premature fusion of one of the 6 major sutures in the infant calvaria. Usually, the skull bones are not fused in infants, and it allows for brain growth. Many of the problems a baby can have depend on: Sometimes, if the condition is not treated, the build-up of pressure in the baby’s skull can lead to problems, such as blindness, seizures, or brain damage. Background: The purpose of this study was to confirm initial reports of elevated behavior problems in children with single-suture craniosynostosis, using multiple informants, longitudinal analyses, and a control group. The study was approved by the institutional review boards (IRB) from each participating center: Seattle Children's Hospital; Children’s Memorial Hospital and Northwestern University in Chicago; Children’s Healthcare of Atlanta, St. Louis Children’s Hospital; University of Illinois in Chicago (UIC), the University of Chicago (UC) and Children’s Hospital of Philadelphia (CHOP). Metopic synostosis is a condition in which the metopic suture of the human The DSM based scale assessing pervasive developmental problems was also of interest given previously cited linkages between autistic traits and craniofacial malformations,16 particularly infants with isolated fusion of the metopic suture.17 Finally we conducted exploratory analyses of differences among SSC diagnostic subgroups (e.g., sagittal versus metopic), an issue not addressed by previous investigators. CDC is not responsible for Section 508 compliance (accessibility) on other federal or private website. Trajectories of aggression from toddlerhood to age 9 predict academic and social functioning through age 12. However, several methodological limitations reduce the certainty of this impression. At T2, all differences were small and statistically non-significant (p-values = 0.286 to 0.938). Chieffo D, Tamburrini G, Massimi L, Di Giovanni S, Giansanti C, Caldarelli M, et al. This work was supported by a grant from the National Institute of Dental and Craniofacial Research (NIDCR grant # R01 DE 13813 awarded to Dr. Speltz). Given the exploratory nature of these analyses and the potential for increased Type I errors due to multiple comparisons, we examined ES and p-values descriptively, rather than viewing p-values as dichotomous outcomes. Patients were less likely to come from upper socioeconomic (SES) backgrounds compared to controls (Hollingshead categories I-II; 61% cases, 79% controls). These are important considerations as behavior problems are correlated with socio-demographic factors11 and are only moderately stable over time.12 The previous studies relied solely on maternal reports and different informants can provide very different perspectives on child functioning (e.g., mothers versus fathers; teachers versus parents), with moderate correspondence among them.13, 14, The present study examined children with and without SSC who were identified in infancy and whose behaviors were assessed by multiple informants (mothers, fathers, and teachers). Analyses were completed by using the STATA SE 10.0 software package.24. Doctor of Philosophy (Health Psychology/Behavioral Medicine), August 2000, 100 pp., 6 tables, 6 illustrations, references, 87 titles. This constrained our ability to examine nonparent caregivers’ reports of behavioral adjustment, which tend to have better predictive validity.27. Similar to recent findings for children with congenital heart disease, the preschool years may represent a ‘silent period’ with regard to significant psychological problems for children with SSC.25 In the previously reviewed studies more problems were seen at elementary school age, a time in which there is usually a significant increase in the social and academic demands placed on children. Differences were again negligible based on gender (65% non-participants were male, compared to 61% participants) and study site (non-participation rate at T2 ranged from 22% to 40%). Duhig AM, Renk K, Epstein MK, Phares V. Interparental agreement on internalizing, externalizing, and total behavior problems: a meta-analysis. One parent (generally the mother) was interviewed to update the child’s medical and early intervention history and to determine if the child was currently in preschool or cared for by an adult other than parents for any part of the week (or had been since the previous evaluation). Fifty-two families declined actively (n = 29) by expressing lack of interest or passively (n = 23) by not responding to attempts to contact them. In some cases, craniosynostosis occurs because of an abnormality in a single gene, which can cause a genetic syndrome. Wong-Gibbons8 reported the lowest rate of impairment (13% of mothers reported “emotional or behavioral delays” in children mostly under 5), although no details were provided. Am J Med Genet Part A. Boulet SL, Rasmussen SA, Honein MA. Predictive value of minor anomalies: I. On average toddlers/preschoolers with SSC show behavioral development that is largely indistinguishable from same-aged peers of similar socioeconomic background. Kids with craniosynostosis have an irregular head shape. Boys with single-suture craniosynostosis score lower on academic and IQ tests than girls; and males are more likely than females to have learning problems (50 vs 30%); males with unicoronal synostosis have a 86% risk of learning disorder . CDC, like the many families of children with birth defects, wants to find out what causes these conditions. Patients may suffer from head deformity that can be acute and permanent if left untreated [4]. Infants were eligible if they: (1) had sagittal, metopic, unilateral coronal, or unilateral lambdoid craniosynostosis confirmed by computed tomography scans;(2) had yet to undergo cranial vault surgery and (3) were 30 months of age or younger at the time of recruitment. The purpose of this study was to confirm initial reports of elevated behavior problems in children with single-suture craniosynostosis (SSC), using multiple informants, longitudinal analyses and a control group. We hypothesized higher levels of maladjustment for children with SSC than comparison children, particularly at the older age and in selected areas of previously observed vulnerability: attention and social adjustment. At T1 children with SSC had more behavior problems than unaffected controls on all scales of the CTRF (ES = 0.32 to 0.43), though these differences were imprecise with p-values ranging from 0.063 to 0.133 (Table 3). At T2, mothers of children with SSC again reported slightly more behavior problems than mothers of controls, though these differences were variable and small in magnitude (Table 3). A doctor will feel the baby’s head for hard edges along the sutures and unusual soft spots. We also used logistic regression to calculate odds ratios (OR) to determine whether patients were more likely than controls to score above established clinical cut-offs on the CBCL and CTRF broadband and total scores (defined as T-scores ≥60) based on the reports of any single informant (mother, father or teacher), either parent, or the combination of all three informants. We also thank Sharman Conner, Rebecca Gaither, and Claudia Crilly Bellucci for project coordination and data collection, Kristen Daniels for data analysis; and Diana Prise for data entry and validation. attention problems (P , .05), and inattention problems (P , .01) than normative population and with other diagnostic subgroups. This can limit or slow the growth of the baby’s brain. A Child Behavior Checklist (CBCL) was completed when children were ~19 months by 436 mothers (219 with SSC) and 371 fathers (177 with SSC); and at ~37 months by 361 mothers (175 with SSC) and 303 fathers (142 with SSC). This can lead to developmental problems, headaches, and brain damage. Relatively few children in either group scored above the established clinical cut-off based on scores from any of the three reporters (Table 5). At the oldest age point, both mothers and fathers (but not teachers) generated higher average scores for patients than for controls on scales measuring attention and social problems, with small to medium effects sizes (0.20 to 0.32). Stata statistical software [computer program]. Craniosynostosis is a condition in which the sutures close too early, either in the womb or shortly after birth, that may cause problems with skull growth, and in some cases with brain growth. 2012 Sep; 130(3): 635–647. Briggs-Gowan MJ, Carter AS. Understanding the factors that are more common among babies with a birth defect will help us learn more about the causes. Although average CBCL/CTRF broadband and total scores for all informants were consistently higher for children with SSC, these differences were small and unreliable. Speltz, Morton, Goodell, and Clarren (1993) found that children with various craniofacial anomalies—including those with craniosynostosis—were more than twice as likely as children in a matched control group to have teacher- and parent-reported behavior problems at school … Differences by diagnostic subgroup were small and were not statistically significant at either time point (T1: p = 0.488 to 0.680; T2 p = 0.100 to 0.258). As the baby’s brain grows, the skull can become more misshapen. Craniosynostosis is a rare condition in which an infant has an abnormally shaped skull after the cranial sutures fusing too early. Pike A, Iervolino AC, Eley TC, Prise TS, Plomin R. Environmental risk and young children's cognitive and behavioral development. Craniosynostosis is a birth defect where the cranial sutures (fibrous joints between skull bones) are permanently fused. You may notice problems with The magnitude of these group differences was slightly larger at T2 after applying IPW (Internalizing: ES = 0.16, p = 0.126; Externalizing: ES = 0.02, p = 0.814; Total: ES = 0.04, p = 0.711). Gross D, Fogg L, Young M, Julion W. The equivalence of the child behavior checklist/1 1/2–5 across parent race/ethnicity, income level, and language. A raised firm edge where the sutures closed early, Slow growth or no growth in the baby’s head size over time. Other signs may include: Doctors can identify craniosynostosis during a physical exam. We thank the families who have graciously participated in this research. The CBCL and CTRF have 99 items that are rated on 3-point rating scales: 0 = not true (as far as you know), 1 = somewhat or sometimes true, and 2 = very true or often true. Use of clomiphene citrate and birth defects, National Birth Defects Prevention Study, 1997–2005. Craniosynostosis can also cause increased pressure in the brain, which can lead to vision loss and learning problems. Heyting A, Tolboom JT, Essers JG. Finally, we examined the correlation between informants at both visits using Pearson’s r for the Externalizing, Internalizing, and Total Problems scores. Long-term neuropsychological development in single-suture craniosynostosis treated early. Chronic physical illness and mental health in children. It affects boys slightly more often than girls. Bosquet M, Egeland B. Craniosynostosis requires evaluation by specialists, such as a pediatric neurosurgeon or plastic surgeon. Unadjusted mean standard scores and standard deviations from the CBCL and CTRF for children with and without single suture craniosynostosis are provided in Table 3. These items reference eye contact, reciprocal language, and fearfulness in interpersonal situations. As a matter of courtesy we request that the content provider (Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities) be credited and notified in any public or private usage of this image. Snyder and Pope6 found particular vulnerabilities among children with SSC in social adjustment and attention. Infants were excluded for: 1) prematurity (<34 weeks gestation); 2) presence of major medical or neurological conditions (for example, cardiac defects, seizure disorders, cerebral palsy, or other significant health conditions requiring major surgery); 3) presence of three or more extracranial minor malformations as defined by Leppig and coauthors;18 or 4) presence of major malformations. Group differences at T1 were negligible in nearly all domains, though children with SSC were somewhat less likely than controls to have sleep problems (ES = −0.20, p = 0.055; see Figure 1). Read her story as well as other stories from families affected by craniosynostosis ». Twins were eligible to participate in the study if one of them had SSC. Generating an ePub file may take a long time, please be patient. The development and maintenance of anxiety symptoms from infancy through adolescence in a longitudinal sample. Group comparisons were then re-run for each outcome, with analyses weighted by the inverse of the probability of being observed to account for dropout. 2. At T2 children with SSC had slightly more behavior problems on all scales, though these differences were small and variable (Table 4). The first and only symptoms are usually changes in the shape of the baby’s head and face. OBJECTIVE: We compared the developmental status of school-age children with single-suture craniosynostosis (case group) and unaffected children (control group). All group differences at T2 were negligible. Within the case group we compared the performance of children distinguished by location of suture fusion (sagittal, metopic, unicoronal, lambdoid). 1Department of Surgery, Northwestern University, Chicago, Illinois, 2Departments of Psychology and Plastic Surgery, Shriners Hospital for Children, Chicago, Illinois, 3Psychiatry and Behavioral Medicine, Seattle Children’s Hospital, Seattle, Washington, 4Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, 5Department of Psychology, The Chicago School of Professional Psychology; Chicago, Illinois, 6Department of Psychology, St. Louis Children’s Hospital, St. Louis, Missouri, 7Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri, 8Craniofacial Team, Children’s Healthcare of Atlanta, Atlanta Georgia, 9Department of Epidemiology, University of Washington, Seattle, Washington, Forest plot presenting adjusted mean differences and effect sizes with 95% confidence intervals (CI) for Child Behavior Checklist (CBCL) and Caregiver-Teacher Report Form (CTRF) syndrome and DSM scores at Time (T) 1 and T2. Long-term studies demonstrate that in addition to correcting functional problems associated with craniosynostosis, reconstructive surgery has a positive effect on the child's self image and the ability to get along with … 2008;146A:984–991. *Portions of this paper were presented at the 64th and 65th Annual Meetings of the American Cleft-Palate-Craniofacial Association, Broomfield, Co, April 27, 2007 and Philadelphia, PA, April 18, 2008. Twelve percent of eligible controls did not respond when contacted after a match was made. These sutures allow the skull to grow as the baby’s brain grows. Means and standard deviations were calculated separately by group for all measures. A CBCL was completed at Time 1 (T1) when children were ~19 months by 436 mothers (219 patients and 217 controls) and 371 fathers (177 patients and 194 controls); and at Time 2 (T2) when children were ~37 months by 361 mothers (175 patients and 186 controls) and 303 fathers (142 patients and 161 controls). Some children with craniosynostosis may have issues with self-esteem if they are concerned with visible differences between themselves and other children. The data for 91 children with craniosynostosis (47 sagittal, 15 unicoronal, 13 metopic, 9 multisuture, and 7 bicoronal) were collected at their routine, 10 years of age IQ assessment (mean age 123.8 months). Researchers estimate that about 1 in every 2,500 babies is born with craniosynostosis in the United States.1. Achenbach TM, McConaughy SH, Howell CT. Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity. Publisher's Disclaimer: This is a PDF file of an unedited manuscript that has been accepted for publication. Finally, to examine group differences in specific behavioral domains, we used adjusted linear regression to calculate ES and p-values for the CBCL and CTRF syndrome and DSM sub-scales. This happens before the baby’s brain is fully formed. Craniosynostosis that's not corrected can cause pressure inside the skull (intracranial pressure). The patients included 61 males and 30 females; 62 patients had undergone surgery and 29 had not. Premature fusion of both coronal sutures (bicoronal) leads to craniosynostosis in a majority of people with this condition. The images are in the public domain and thus free of any copyright restrictions. A significant limitation is the differential loss of participants across time from lower SES backgrounds and from minority groups, not unusual in longitudinal studies.26 However, we used inverse probability weighting to determine whether this bias substantially altered our findings; there was no evidence that it did so. Craniosynostosis is a condition in which the bones in an infant’s skull grow together too early, causing problems with brain growth and head shape. Based on the previously cited studies, we hypothesized that children with SSC would demonstrate more behavioral and emotional problems than children without SSC, as reported by all informants, and that such differences would increase with age. Your doctor will feel your baby's head for abnormalities such as suture ridges, and look for facial deformities. Craniosynostosis doesn't always need to be treated. The most common complications of uncorrected craniosynostosis include increased intracranial pressure, asymmetry of the face, and malocclusion. already built in. Obstructive sleep apnea-specific quality of life and behavioral problems in children with syndromic craniosynostosis. Certain medications ― Women who report using clomiphene citrate (a fertility medication) just before or early in pregnancy are more likely to have a baby with craniosynostosis, compared to women who didn’t take this medicine. Children born with craniosynostosis may have increased pressure on the brain and vision problems. Children with sagittal synostosis were treated as the reference group, and we estimated overall p-values for diagnostic group using a Wald statistic. At T1 and T2, correlations between mother and father reports were moderate (r = 0.54 to 0.62 at T1; 0.60 to 0.61 at T2). We recruited control infants who were generally similar to patients, taking into consideration: 1) age, 2) sex, 3) family socioeconomic status within the same Hollingshead 4-factor classification category19 and 4) ethnicity. Craniosynostosis is a condition where one or more of the sutures of the skull close too early. When that happens, the skull will have an abnormal shape, although the brain inside the skull has grown to its usual size. Attention problems on both instruments are indexed by a syndrome scale of the same name and the DSM-IV attention deficit hyperactivity (ADHD) scale; both scales describe behaviors commonly associated with ADHD (e.g., can’t concentrate, restless or hyperactive). Version release 10. However, Kelleher et al.,7 who retained 96% of their initially identified children, reported a problem rate of 37% including attention deficit disorder, autism, and hyperactivity. The causes of craniosynostosis in most infants are unknown. For example, a special x-ray test, such as a CT or CAT scan, can show the details of the skull and brain, whether certain sutures are closed, and how the brain is growing. We first identified demographic and clinical predictors of attrition, case status, and behavioral outcomes and then used these variables to predict the probability of being observed (i.e. Those not enrolled were mostly infants who “aged out” of the project before they could match to an enrolled case (76% of interested controls). Craniosynostosis that's not corrected can cause pressure inside the skull (intracranial pressure). Their head may look smaller, longer, wider, or more narrow than usual. Aside from facial deformities, other possible clinical problems include hearing loss, dental crowding, nasal airway obstruction, a v-shaped palate and a … Compared to participants, non-participants received higher scores at T1 based on teacher report on the CTRF (differences in T-scores = 1.3 to 2.8 on broad band scales). Craniosynostosis Complications. Sometimes, though, more than one suture closes too early. Starr JR, Kapp-Simon KA, Cloonan YK, Collett BR, Cradock MM, Buono L, et al. METHODS. Deborah’s daughters were born with craniosynostosis. What Are the Signs & Symptoms of Craniosynostosis? The edges of the skull bones are called sutures, which normally close by age 2 to 3. This can lead to a build-up of pressure inside the skull. Imaging studies. Ghisletta P, Spini D. An Introduction to generalized estimating equations and an application to assess selectivity effects in a longitudinal study on very old individuals. A baby with craniosynostosis will need to see a healthcare provider regularly to make sure that the brain and skull are developing properly. Sample demographic characteristics are summarized in Table 1. They found that 20% of the school age children in their sample required assistance from a classroom aid to manage their behavior. Differences were small and were not statistically significant based on caregiver/teacher report at T2 (OR = 0.76 to 1.96, p = 0.266 to 0.768). If you are pregnant or thinking about becoming pregnant, talk with your doctor about ways to increase your chances of having a healthy baby. A minimum of one caregiver/teacher report was available for 169 of these children (74 with SSC) using the Caregiver-Teacher Report Form (CTRF). Children with SSC had more problems than controls across several domains at T1, though these differences were variable and had large confidence intervals. This happens before the baby’s brain is fully formed. The ePub format uses eBook readers, which have several "ease of reading" features Results indicate that overall, school-aged children with single suture craniosynostosis have higher scores on the CBCL than the general population; specific elevations were observed including somatic complaints, aggressive behavior, social problems, attention problems, and thought problems and rule-breaking behavior. The predictive validity of parent and teacher reports of ADHD symptoms. It has an incidence of approximately 1 in 2000 live births. This can lead to developmental problems, headaches, and brain damage. Craniosynostosis is a birth defect in which the bones in a baby’s skull join together too early. Among patients, 102 had sagittal synostosis, 53 had metopic synostosis, 56 had right or left unilateral coronal synostosis, and 12 had lambdoid synostosis. We also examined the demographics and T1 behavioral outcomes of participants versus those lost to follow-up between T1 and T2. Diagnosis of craniosynostosis may include: 1. " One of the things that stood out, As this review demonstrates, there is growing evidence that single-suture craniosynostosis is associated with neurobehavioral problems, including learning disabilities and behavior problems I'm not saying this behavior we are seeing is not normal 2/3 yr old behavior and w/consistent descipline will eventually go away. You will be subject to the destination website's privacy policy when you follow the link. But, the timing of surgery depends on which sutures are closed and whether the baby has one of the genetic syndromes that can cause craniosynostosis. Centers for Disease Control and Prevention. Webster-Stratton C, Reid MJ. Campbell SB, Spieker S, Burchinal M, Poe MD. CONCLUSIONS: Although children who have syndromic craniosynostosis Group × time interactions were small in magnitude and not statistically significant (p = 0.690 to 0.961). Psychological adjustment to pediatric physical disorders: a meta-analytic review. In 2015, Dr. Matthew Speltz’s team published results indicating that school-age children with the most common form of craniosynostosis are more likely to suffer developmental delays and learning problems than … Total of Emotionally Reactive, Anxious/Depressed, Somatic Complaints, and Withdrawn Syndrome Scales, Total of Attention Problems and Aggressive Behavior Syndrome Scales, Total of all 7 (6 for CTRF) Syndrome Scales, Mood instability, difficulty handling change, whiny, Problems with separation, self-consciousness, fearfulness, Problems with eating, bowels, nausea, aches and pains, Lack of interest in age appropriate behaviors, unresponsive to affection, Resists bed, frequent nighttime waking, nightmares, Doesn’t focus, wanders away, shifts from one activity to another quickly, Defiant, gets into frequent fights, hits and bites, temper tantrums, Symptoms associated with Major Depressive Disorder and Dysthymic Disorder, Symptoms associated with General Anxiety Disorder, Social Anxiety Disorder and Specific Phobia, Symptoms associated with Autism Spectrum Disorders including Asperger’s Syndrome, Attention Deficit/ Hyperactivity Problems, Symptoms associated with inattentive and hyperactive types of attention disorders, Symptoms associated with aggression, anger, temper tantrums. 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