Helping Your Child with Attention, Organization and School after Transplant

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Helping Your Child with Attention, Organization and School after Transplant

May, 2022

Presenter: Beth Colaluca, Ph. D, Cook Children’s Medical Center

Presentation is 39 minutes with 15 minutes of  Q & A

Summary: Children who receive bone marrow or stem cell transplant may experience cognitive challenge after treatment. This presentation identifies these challenges, describes how they can be assessed, and suggests school and home-based remedies for these issues.

Highlights:

• The most common cognitive challenges for children after transplant involve attention, processing speed, executive functioning, and memory.
• Neuropsychological testing can identify problems in childhood cognition as well as their underlying causes. This information can guide intervention strategies and provide the documentation needed to receive appropriate  services.
• There are many different types of school-based interventions that may be helpful for children with post-transplant cognitive challenges. These include individualized education plans that modify the curriculum to meet the student's needs.

Key Points:

(02:04): Risk factors for post-transplant cognitive problems in children include younger age at time of treatment, chemotherapy and radiation, and the intensity of treatment.

(07:46): There are several methods that can be used to assess childhood cognitive functioning after a stem cell transplant.

(10:33): Standardized testing after a stem cell transplant can determine if a child’s cognitive skills fall within or outside the normal range.

(12:12): Intelligence refers to an individual's ability to acquire and apply knowledge and skills.

(15:09): Executive functioning involves higher level cognitive skills that also shape behavior and emotions. Neuropsychological testing can also evaluate these capacities in children after transplant.

(17:07): Neuropsychological testing can also evaluate different types of memory, planning, and reasoning capabilities.

(22:23): Emotional, social, and behavioral functioning tests help tease out the contribution of other variables that might impact cognitive function.

(24:36): When possible, baseline testing before transplant can be very helpful in identifying cognitive problems after transplant with annual evaluations.

(30:51): Students who have a physical or mental impairment that substantially limits one or more life activities can qualify for 504 accommodations to provide additional support.

(34:47): Speech and occupational therapy can also be helpful in addressing posttransplant cognitive challenges.

Transcript of Presentation:

(00:00) [Mary-Clare Bietila]: Introduction. I'm happy to welcome you to the workshop, Helping Your Child with Attention, Organization and Learning after Transplant. I'd like to introduce today's speaker, Dr. Beth Colaluca. Dr. Colaluca has worked as a pediatric neuropsychologist at Cook Children's Medical Center for 19 years and is a member of the bone marrow transplant team. She assesses children before and after transplant to determine any neurocognitive changes as a result of transplant. She is active in research to reduce late effects of cancer on neurocognitive functioning. Please join me in welcoming Dr. Colaluca.

 (00:45) [Dr. Beth Colaluca]: Overview of Talk. All right. Thank you so much for that introduction.

 (00:47): My objectives. So first, I'd like to start by presenting my goals for you from my presentation. By the end of my talk, you should be able to identify risks for neurocognitive challenges following transplant, and also be able to describe methods of assessment for determining a child's cognitive strengths and limitations and understanding how testing can help identify difficulties and guide intervention strategies.

(01:18):Thirdly, I hope that you're able to demonstrate knowledge of available school-based services, including 504 plans and individualized education plans or IEPs. And then I'm hoping that you can identify methods to request and/or advocate for these school-based interventions across a child's educational career.

(01:38): Finally, I hope that you're able to explain strategies for use at home and in school to support children with neurocognitive challenges.

 (01:50): There are several risk factors for cognitive decline after stem cell transplant in children. So let's jump right into the discussion of risk factors for cognitive challenges. Many years of research have yielded fairly consistent evidence of common risk factors for cognitive decline following transplant in children.

(02:04): Posttransplant cognitive risk factors for children include younger age at treatment, chemotherapy, and intensity of treatment. One of the greatest risks is younger age at time of treatment. The brain develops very rapidly at young ages, particularly under three years of age. And so any disruption during this critical time period can result in changes in cognitive functioning.

(02:26): Many patients coming into transplant have received previous treatment for their condition. So for example, chemotherapy for leukemia. Having had previous treatment has a cumulative effect and thus presents an additional risk factor.

 (02:45): Several types of radiation pose a high risk for childhood cognitive functioning. Treatment type is also an important risk factor. So radiation, particularly cranial, spinal or total body of radiation is considered to be a very strong risk factor for changes in cognitive functioning, particularly at young ages.

(03:06): There's also plenty of evidence to suggest that chemotherapy alone can cause fairly significant cognitive changes as well. There are certain types of chemotherapy that carry greater risks, such as methotrexate, particularly when it is administered intrathecally.

(03:22): Treatment intensity. As you would expect, the stronger the dose of treatment, the higher the risk of subsequent cognitive changes.

(03:34): Different diagnoses can yield different risks. So if you've got central nervous system involvement, for example, brain tumors, the risk for cognitive challenges following treatment is even higher. It is important to note, however, that progression of certain neurodegenerative disorders, such as adrenoleukodystrophy, can actually be halted by treatment via bone marrow transplant. So there are some instances in which we expect stability rather than cognitive decline over time.

(04:08): Children may also experience late effects of cognitive deficits from stem cell transplant. Length of time since treatment. So we know that the so-called late effects of treatment can continue to develop five to seven years post-completion of treatment. So we often re-evaluate patients annually, sometimes every two years post-transplant to continue to monitor for these declines.

(04:32): The other interesting phenomenon that we often see is patients growing into their deficits. This refers to the combination of cognitive challenges, coupled with increasing demands as a child gets older.

(04:45): So for example, a child who may have difficulties with planning and organization, some of what we refer to as executive functioning skills, following transplant, may not struggle with these problems during elementary school, as teachers, and even us as parents tend to provide more structure at young ages. However, these children may begin to experience more difficulties in the middle school and high school years as the demands for independent work increase and the supports they are used to relying on are no longer in place, and they haven't developed the necessary skills to fulfill these demands.

(05:22): There are some studies that suggest that females are, for some reason, more vulnerable to treatment effects than males. So that is an additional risk factor.

(05:34): Baseline level of functioning. This is how a child is functioning prior to their diagnosis and treatment. So if you have a child that was functioning at or above expected levels cognitively prior to their diagnosis and treatment, they are less likely to experience extreme functional deficits versus a child who may have come into treatment with some developmental delays.

 (06:09): Some late effects of stem cell transplant in children can limit academic progress by hampering attention, executive functioning, and processing speed. There are certain cognitive challenges that present specific risks to academic functioning that I think are important to highlight as they may go unrecognized, or may even be misidentified without proper assessment. For example, inattention, as you would expect, can impact how much information gets encoded and stored. So it may appear that a child has memory problems, because they aren't maybe remembering what they're being taught at school, when in reality, it could be that they just may not be attending to the information so it doesn't get processed. Neuropsychological testing can help tease out these factors.

(06:46): Executive functioning includes problems with planning and organization. This can certainly impact how a child is able to navigate, completing their assignments, getting their work turned in, even in the absence of any learning difficulties. So they may understand the material, but they simply are having a difficult time getting things turned in.

(07:08): Processing speed is also extremely important. Children who are not keeping up with the tempo of their teacher will fall behind without appropriate accommodations. I've had many parents tell me that their children mention that their teachers go too fast and that they struggle to keep up.

(07:28): Problems with these three particular cognitive processes, the attention, executive functioning, and processing speed are the ones that I see most commonly following transplant, and what I hear from parents, are the greatest areas of concern.

(07:46): There are several methods that can be used to assess childhood cognitive functioning after a stem cell transplant. I want to spend a few minutes discussing methods of assessing cognition, as I think it's important to understand the process of how we determine what types of challenges a particular child may face, as well as the severity of the problem, including whether or not it truly is a problem.

(08:03): I've had instances where parents are questioning whether or not their child may actually have memory problems versus attention problems versus selective hearing. So for parents, sometimes they just want to know, is there really a problem or is this something that's typical?

 (08:19): Neuropsychology is defined as the study of brain behavior relationships. Neuropsychological assessment is the functional evaluation of the brain. It's completely noninvasive. So there's no pokes, children aren't hooked up to any equipment, but rather they're asked questions, they're asked to perform paper, pencil tasks, some tasks are completed on the computer.

(08:50): Standardized assessment means that information has been collected on large numbers of children in the same age group. And we look at different areas of cognitive functioning. And we're going to go into detail about each of those in a few minutes.

 (09:09): The next bullet point talks about identifying individual strengths and weaknesses in at-risk populations, such as children undergoing bone marrow transplant. As often as possible, we conduct baseline assessments on our transplant patients in order to have a basis of comparison for the post-transplant course.

(09:31): It's more than just the testing that we do with the child. It includes a parent interview, which asks a lot of questions about the child's functioning and parental observations. We also conduct a thorough review of records, both medical records and school records. Then behavioral observations, how a child acts during testing often provides rich information about a child's functioning that may not otherwise be completely captured by other methods of assessment, particularly pre-transplant.

(10:08): I notice that with my kids, they might be very anxious. If you have a child who's fairly recently diagnosed, they're just kind of adjusting to having this medical condition, and now they're going to have this big treatment, so they may be very anxious about testing. Some children sometimes physically don't feel well, so that can certainly impact their testing. So we take all of these things into consideration.

(10:33): Standardized testing after a stem cell transplant can determine if a child’s cognitive skills fall within or outside the normal range. Finally, our standardized testing data provides a way to compare a child's performance to normative measures to determine whether or not a skill falls within the expected range or maybe above or below that expected level.

(10:46): So what's the difference between psychoeducational and neuropsychological testing? School-based testing, or psychoeducational testing, is conducted primarily to determine if there is a problem. It's usually briefer than a full neuropsychological evaluation and may include only IQ and achievement testing, possibly a few other measures. Schools conduct re-evaluations every three years to determine the ongoing need for services.

(11:21): Neuropsychological testing identifies problems in childhood cognition as well as the underlying processes that contribute to the problem. This information can guide intervention strategies that may be needed. Neuropsychological testing not only identifies if there is a problem, but evaluates the underlying cognitive processes that contribute to the problem. So it's more thorough. It's looking at why there is a problem. We try to focus on the strengths that can be capitalized upon. It is useful for intervention planning. So ultimately, that's our goal, is to determine the best intervention strategies for the child.

(11:52): This slide just lists the different areas of functioning that are typically included in a full neuropsychological evaluation. I'm going to go into each of these into detail, but just to give you an idea, it's pretty thorough. We look at a lot of different areas of functioning.

(12:12):. So, intelligence, fairly complex concept, but basically refers to an individual's ability to acquire and apply knowledge and skills. It's thought to be stable over time, in the absence of any medical condition that could cause a change. So obviously with bone marrow transplants, we can definitely see a change. So we do retest IQ, but in a child who does not have any medical issues, it's supposed to be a stable concept.

(12:45): The concept has changed over time with current beliefs suggesting that intelligence comprises several areas of functioning, including verbal language skills, nonverbal, perceptual reasoning abilities, novel problem-solving skills, working memory and processing speed.

 (13:06): So with academic functioning, these are just measures of attainment of educational goals. So we look at things like word recognition or sight word reading, where a child reads a list of words out loud to the examiner.

(13:19): Reading comprehension, the child will read a passage and then answer questions about it to see if they've understood what they've read.

(13:25): Reading fluency refers to reading speed. So we time the child as they are reading.

(13:32): Math computation refers to calculation. You'll just see a child completing addition, subtraction, multiplication, and division problems.

(13:41): Math problem solving refers to word problems, and math fluency is speeded math test.

(13:49): Spelling test is what you would expect, just a basic spelling test.

(13:53): For expressive writing, we're looking at grammar, language usage, organization of ideas, things like that.

(13:59): And then writing fluency refers to writing speed.

(14:05): Attention deficits can be identified through neuropsychological testing. So there are many facets to attention ranging from our basic response to stimuli to multitasking. Selective attention refers to filtering out non-essential information. For example, most people sitting in a quiet room, taking a test, barely notice if the air conditioning kicks on, but for a child with attention problems, it may completely disrupt their thought process.

(14:32): Sustained attention refers to maintaining focus over time and alternating attention is the ability to change tasks quickly. Different tests tap into to these different aspects of attention. The attention network is complex and involves many different areas of the brain so that disruption to any one area can result in problems with attention, making it really one of the most vulnerable cognitive processes, and one of the areas I most commonly see problems in with my post-transplant patients, as well as other populations.

(15:09): Executive functioning involves higher level cognitive skills that also shape behavior and emotions. Neuropsychological testing can also evaluate these capacities in children after stem cell transplant. Executive functioning refers to higher level cognitive skills that control behavior and emotions. It's also referred to as the command-and-control function or conductor of cognitive skills. When a child struggles with executive functioning, they exhibit problems organizing output or executing tasks. So you may have a child that has average to even above average intelligence, but they have problems deciding how to manage through a task and control their behavior in doing so.

 (15:40): The different aspects of executive functioning, include goal setting. This refers to deciding what is important and involves self-motivation.

(15:51): Inhibition refers to holding back an impulse, by evaluating the consequences of that action. So for example, if you are at the grocery store and you run into a neighbor you don't particularly care for, saying a cordial hello, instead of telling them what you might really think is a socially appropriate response, and also demonstrates that inhibition. Children who have difficulties with that might not say the appropriate response.

(16:20): Cognitive flexibility. This is being able to alternate from one thought process to another, or multitasking.

(16:30): Planning involves looking ahead and making decisions about what you're hoping to see.

(16:35): Initiation, knowing how to start a task and having the motivation to do so.

(16:42): Organization. This is when we arrange our belongings in a meaningful, systematic, and useful pattern. So for children who have executive functioning deficits, they may have difficulties organizing their backpacks. You may see papers stuffed in there. Their school papers are everywhere, their room is a disaster. If we are organized, it helps increase our efficiency.

(17:07): Neuropsychological testing can also evaluate different types of memory, planning, and reasoning capabilities. Working memory. This is short-term storage of information that you're able to manipulate and use quickly. So an example of this would be maybe somebody working at Starbucks and they have to remember a customer's order long enough to enter it into the computer, get the order made, but then they need to quickly forget that information because they're going to have to remember the next person's order and they don't want to get those confused. So this type of memory does not refer to long-term storage of information. That's a different type of memory that we'll discuss in more detail later.

(17:40): I'm going to show a couple of examples of tests of executive functioning to show you how we look at this. This is a test that assesses inhibitory control. So a child is asked to first read the printed words, ignoring the color of the ink that they're printed in. Then the next condition they're asked to name the color the words are printed in, this requires the ability to inhibit the urge to read the word. So kind of a fun task for everybody and a little bit challenging.

(18:10): This is an example of a test that involves planning and reasoning. The post on the left shows the initial position that some different colored balls are placed on this pegboard and there's a couple of different goal positions there to the right. And you see goal position two, six, and 10. The child is asked to place the balls in the other goal positions in as few moves as possible. So in order to do this, they have to think a little bit ahead of time before they just start moving them around. And the task becomes progressively more difficult.

(18:49): For learning and memory, these are also complex concepts that we evaluate in several different ways. First, memory tasks are broken down into verbal or visual. Verbal tasks usually include things like rote learning of word lists. Other measures are contextual memory, these are usually story memory tasks where a child has read a story and is asked to tell back the story. Visual memory tasks involve recall of spatial information or more complex visual stimuli, such as faces or pictured items. There's other memory tasks that look at the ability to learn both verbal and visual stimuli simultaneously.

(19:31): Another way we break memory down is into immediate memory versus long-term storage. So for example, the story memory task I talked about earlier. A child may be asked to immediately tell the story that they heard, and then incidentally, about 30 minutes later, they're asked to retell the story.

(19:50): Many different tests can evaluate a child’s ability to encode, store and retrieve information. Many tests also include recognition measures in addition to recall so that we can determine if a child has problems with encoding and storage of the information versus retrieval difficulties. So for example, if a child claims to be unable to recall any parts of that story, but then they can answer multiple choice questions accurately, this might indicate problems with memory retrieval, despite intact encoding and storage of the information. For this child, I might recommend that they be provided with multiple choice, true, false, or matching format testing versus short answer, or fill in the blank as an accommodation.

(20:27): Visuospatial processing refers to organizing visual information into meaningful patterns and understanding where objects are in space or as shown in this slide. A real-life example would be the ability to neatly pack a shopping cart at a grocery store. And it says, "And they said Tetris wouldn't help me in life."

 (20:52): Verbal language skills refers to our use of language, which includes the ability to express our thoughts with our words or expressive language. These include skills such as object naming, word finding, conversational fluency, rate, rhythm, prosody.

(21:10): Phonological processing refers to breaking words down into their individual sounds. Incidentally, this is an important underlying skill for learning to read and spell. There are comprehension tests and measures of receptive language.

 (21:26): For sensorimotor functioning, this refers to receiving sensory input and producing a motor response. Some tasks used to assess sensorimotor functioning include things like finger tapping. This is where the child is asked to tap their index finger to their thumb as quickly as possible. And they're timed doing this.

(21:46): Finger sequencing refers to tapping the thumb to the index finger, then the middle and so on, in sequence. There are pegboard tasks where children are asked to place pegs in a pegboard with each hand independently, then both together.

(22:02): Grip strength is measured with a device called a hand dynamometer. And we, again, look at each hand separately just to see if there's differences between one side of the body and the other that can indicate differences in brain functioning. There's other sensory percept tasks and visual-motor integration, or design copying tasks.

(22:23): Emotional, social, and behavioral functioning tests are included to help tease out the contribution of other variables that might impact cognitive testing. We might see changes as a direct or indirect effect from a medical condition. Children may experience emotional adjustment disorders associated with their medical condition. Children often feel different from their peers. They want to return to their previous lives that didn't include doctor's appointments and treatment. These may impact performance on testing and also in school. For example, anxiety can result in poor performance on measures of attention.

 (23:08): So adaptive behavior refers to the ability to take care of ourselves, interact with and help others at an age appropriate level. The adaptive functioning deficits you can see, even with average intelligence. This can be seen in terms of social skills deficits, problems with safety skills and even cause problems with employability.

(23:39): So test results are only one piece of the puzzle for conceptualizing a child. As I mentioned previously, we consider a combination of the child's medical and academic history along with behavioral observations made throughout testing and the test scores to determine results.

(23:57): There are certain variables that can impact validity of test results, such as cultural and language differences, sensory impairments, such as hearing or vision loss, effort and motivation of the child, which we try to capture with our behavioral observations. And then things like anxiety and not feeling well, that I've mentioned before.

(24:20): We never use a single test to make a diagnosis. So if a child doesn't do well on a measure of attention, for example, it is taken within the context of other sources of information, including other test data.

 (24:36): When possible, baseline testing before transplant can be very helpful in identifying cognitive problems after transplant with annual evaluations. So for transplant patients, we do our best at our institution to get baseline testing. It's not always possible if a child goes in quickly or if they're too sick to be tested, but we do our best so that we can get a measure with which we compare post-transplant testing with.

(24:55): We ask that patients return one year following transplant and then annually, sometimes, less often, if a child doesn't seem to be experiencing many difficulties or they've had fewer risk factors from the get-go, but we'll ask them to return for up to seven years post-transplant.

(25:11): The most common cognitive challenges for children after transplant involve attention, processing speed, executive functioning, and memory. Conducting these assessments will help provide documentation of these difficulties for families that can be helpful in initiating services for children in school. We will recommend testing for any medical condition or treatment that can impact brain functioning.

 (25:42): When problems are identified, it’s important to advocate for appropriate school services. Advocating for school services. So once a problem is suspected or has been identified, there are several avenues to pursue assistance in school for your child. We usually recommend that parents first talk to their child's teacher or teachers to identify the concerns and discuss any attempts that have been made to address these concerns.

(26:08):  For example, a teacher might think that just because a child has missed a lot of school because they were in treatment, that they had the opportunity to catch up. So they may have some strategies to try first, before we start thinking that these might be cognitive difficulties.

(26:22): There are different types of coordinators, at schools: the response to intervention or RTI coordinators, or the section 504 coordinators. These are available at schools, if a parent does suspect a little bit higher level of difficulty, and they have these concerns. If, they've talked to the teacher and they don't feel like their child's still getting enough, if a child is falling significantly behind grade level, parents can request an ARD or ARD meeting, an Admission Review and Dismissal meeting. And this is the process for initiating special education services.

(26:58): These requests must be made in writing to the school, and then the school must conduct an evaluation within a certain time period. I am not certain if this varies by state, but I believe 30 days is pretty typical. There are advocates both through the school district and outside the school district that can also help navigate the system. I have found in working with my families, that different schools handle things differently, but knowing your rights is extremely important.

(27:29): Sometimes advocating can simply mean educating the school about the risks of cognitive challenges following transplant. Many educators really aren't even aware that bone marrow transplants are associated with cognitive risks and subsequent learning challenges. So they might not understand this connection.

(27:46): So navigating the school system. The first bullet point talks about alphabet soup. I like to refer to this because there's so many acronyms in special education. ARD, which we discussed already, stands for Admissions, Review, and Dismissal.

(28:06): There are many different types of school-based interventions that may be helpful for children with posttransplant cognitive challenges. IEP is the individualized education plan. This is the plan that is developed when there is a need for special education services.

(28:16): FIE is the full and individual evaluation. This is the testing that is done to determine the need for services.

(28:25): Next bullet point talks about an individual health plan, if that's necessary.

(28:29): So different types of school-based services. 504 accommodations. Not a change in the curriculum, there's not a need for a change in the curriculum, but accommodations to the learning environment might be required, such as preferential seating, small group testing. We'll discuss this a little bit further in a few minutes.

(28:57): The IEP or the individualized education plan is when there actually needs to be modification to the curriculum to meet the student's needs. So that's why special education services are necessary.

(29:09): Response to intervention or RTI is a system that was created to assist with potential identification and early intervention strategies. It's used prior to initiation of other services.

(29:21): And then homebound services, when medically indicated, where a teacher will come to a child's home to provide individualized instruction.

(29:30): We're going to go into more detail about the IEP. This is indicated when modification is needed in the curriculum. These are reviewed annually.

(29:43): So the parents will meet with the ARD committee to talk about the goals. Re-evaluations are conducted every three years. It's important to note that the school does not have to accept outside evaluations like neuropsychological testing, unfortunately.

(30:01): IEPs have measurable goals and they involve a description of the instructional placement. So some students will just require inclusion support where a special education provider will come into their mainstream classroom. Other children need resource assistance.

(30:19): ARD transition meetings, I often recommend, between elementary and middle school, as well as between middle and high school. Personnel from both schools attend to assist with a smooth transition.

(30:31): This is just the different categories that a child can qualify for special education services. I usually recommend the other health impairment or OHI category for children whose medical condition can impact their academic functioning or learning, such as transplant patients.

(30:51): Students who have a physical or mental impairment that substantially limits one or more life activities can qualify for 504 accommodations to provide additional support. These are students that don't need a change in the curriculum. They're keeping up with their expected grade level, but they just need some additional supports. This covers medical conditions. It can include things like ADHD or in Texas, even dyslexia is covered under 504, as long as the child is keeping up at their level. There are fewer legal rights under 504 versus an IEP. So that's important for parents to recognize.

(31:36): There are many accommodation strategies to help students with transplant induced cognitive challenges both at school and at home. Now I want to talk about some specific accommodation strategies. These are mainly academic based, but some of the strategies will also be useful at home. So when a child struggles with attention, I often recommend frequent short breaks throughout periods of learning. The teacher may ask for assistance with passing out papers, for example, to allow the child a break from their desk.

(32:00): Preferential seating. This is just when a child is seated close to the teacher and away from distractions.

(32:07): Distraction-free seating for testing. This is where a quiet room is provided with fewer students to allow for fewer distractions for the child.

(32:18): Extra time. This can allow a child with attention problems for mental breaks. It's also a good strategy for children with processing speed and children with attention problems also have slower processing speed as well.

(32:32): The next bullet point suggests that use of note takers. Being provided copies of notes and homework instructions being written down can be helpful if a child's inattentive and they may miss some of these instructions.

(32:45): Fidgets. Sometimes children can benefit from having something to manipulate in their hands to help them focus. There's also things like fidget chairs with kick bands that can be useful as well.

(33:00): For children with memory difficulties, I often recommend shortened instructions with repetition as needed, also multisensory presentation of information. So where the children are getting not only verbal instruction, but some visual aids and manipulatives. Children with memory problems can benefit from having projects broken down into smaller steps, so they have fewer things that they have to remember.

(33:26): And then finally, organizational tools, such as calendars, planners and deadlines can be useful.

(33:32): Breaking tasks into smaller steps, having deadlines, and simplifying directions can help children cope with cognitive challenges after stem cell transplant. For executive functioning, breaking down overwhelming tasks into smaller steps. Students with executive functioning difficulties may be overwhelmed when given a large unstructured project such as science fair or a book report. At home, when they hear, "Clean your room," they may not know how to start. So parents are encouraged to break the task down further by giving more specific instructions such as, "Put your books on your bookshelf and put your clothes in your hamper."

(34:03): Deadlines can be very useful, goal setting. So if your child has a 600-page book they need to read and they have a month to do so, maybe figuring out the number of pages they need to read per day would be useful.

(34:16): Organizational tools, again, are also extremely helpful, such as planners.

(34:21): For children with comprehension difficulties, I often recommend that teachers and parents just simplify directions. Providing demonstration of tasks in addition to verbal instructions is useful, and then having the student demonstrate understanding of instruction by performing the task. Tutoring can be helpful as well as individualized instruction.

(34:47): Speech and occupational therapy can also be helpful in addressing posttransplant cognitive challenges. We're going to go through a few other additional academic supports quickly that are available, such as speech, language therapy. Occupational therapy can help children who struggle with handwriting and copying difficulties, physical therapy for more gross motor difficulties. Counseling and social skills training may be available through the school and also outside of the school.

(35:12): Extended year services are available for students who demonstrate regression in their academic skills, if they're not provided with continuous instruction. There are behavioral intervention plans for children with behavioral challenges and then assistive technology can be super useful. Things like smart pens, electronic note takers, voice recognition, or dictation software.

 (35:34): Other support strategies that can be helpful for a variety of difficulties include things like provision of a structured schedule, visual reminder cues. So for example, a teacher might come up with a signal that they use with a student to help remind them to stay on task. There are academic coaches that are available that teach children how to manage their academic skills.

(35:59): And then medication, this is primarily for attention problems. We don't really have any magic pills for memory difficulties or processing speed, but medication can be extremely useful for attention problems and can really help children out in school.

(36:13): These are some of my favorite executive functioning resources. These are really reference books that provide specific examples of strategies to assist with challenges in different areas of executive functioning. For example, they provide ways to teach task initiation and organizational skills. So I really, really like these.

(36:34): This slide just provides some general resources for advocacy. Some of these provide evidence-based intervention strategies for academic difficulties in reading, math, even behavioral challenges.

(36:50): The PACER Center provides resources, not only for parents, but resources for students and young adults, things like transition services and camps and things like that that can be useful. Then I have the SAT College Board on there as well, because it provides information about available accommodations.

(37:08): The last two resources on my slide are specific to Texas, but I'm sure other states have statewide resources as well.

(37:16): Neuropsychological testing can not only detect cognitive changes posttransplant but also provide the documentation needed to receive appropriate  services. So in conclusion, neuropsychological testing is useful at detecting changes post-transplant. Again, we conduct baseline assessments prior to transplants so that we can make comparisons with post-transplant testing to determine changes over time. We often re-evaluate several years after transplant due to ongoing risks of changes over time and we'll update recommendations to meet the demands that the child faces at their particular age.

 (37:49): The testing also provides documentation needed to receive services. Even though some schools may want to conduct their own evaluations, outside evaluations such as neuropsychological testing can help support parents' concerns and really educate the school personnel about academic problems that post-transplant children are at risk for experiencing.

(38:09): The last two bullet points just reinforce the differences between the IEP and the 504 plans, where the IEP is for special education services for children who are falling behind their curriculum, whereas 504 accommodations are for children to just really increase the likelihood of success, even though they're maintaining their grade level.

(38:32): So with the right supports, children can be successful in their academic and vocational pursuits. I really appreciate your time and attention. I would like to offer my email address for anyone who may have some questions that aren't answered today, my email is bethc@cookchildrens.orgl. Happy to answer any questions now.

Question and Answer Session

(39:04): [Mary-Clare Bietila]: All right. Thank you, Dr. Colaluca. It was an excellent presentation. We're now going to take some questions. As a reminder, if you have a question, please type it into the chat box in the lower left-hand corner. All right. Our first question, "Are school neuropsych evaluations as reliable as getting one from a private provider?"

(39:26): [Dr. Beth Colaluca]: So really good question. Of course, I'm a bit biased. Doing what I do for a living, I work primarily with patients who have hematological and oncologic difficulties and with transplant patients, so I have lots of experience with this particular population. So I would feel like a private provider would potentially provide a more expertise kind of type of evaluation, but not to say... It really kind of depends on what the school is doing as well. With school testing, again, they're typically looking to identify whether or not a problem exists, versus outside testing, I think, is going to be a little bit more thorough.

(40:12): [Mary-Clare Bietila]: Okay. That's good to know. All right. Our next question is, "What's the effect of medical PTSD and/or anxiety, depression and children's development of cognitive function and challenges?"

(40:26): [Dr. Beth Colaluca:] That's a great question. Yeah, absolutely. I mean, because it definitely is the case for some kids and I definitely see that that can be an issue. I do not know of any specific literature that looks at the effect of the medical PTSD on cognition for this particular population. I will say that certainly, we see that as an impact. And anxiety, as I mentioned too, we see that often too. Some kids even have lingering anxiety post-treatment. So I just take that into consideration when I'm doing my interpretation of a particular case. I do think that there can be an impact, though, on cognition. Definitely we know that there's a connection with emotional functioning and cognition. So I just can't answer it specifically what exactly it is, but I definitely think that it's important for the provider who is assessing the child to know about that so that they can take that into consideration with their interpretation.

(41:25): [Mary-Clare Bietila]: Absolutely. Our next question is about depression. "Are there strategies for kids dealing with depression during and after transplant in regard to schoolwork?"

(41:40): [Dr. Beth Colaluca]: With regard to schoolwork, that might be a little different. I know at our institution, our transplant docs are very good about prescribing even just temporary antidepressant medication to help a child with kind of some expected challenges with mood and emotional functioning during transplant. So definitely medication, I think, is helpful. Gosh, with regard to schoolwork, I see a lot of times that parents will kind of back off a little bit on the schoolwork, just because they're dealing with the medical, which is kind of a higher priority. I think as long as you are really in tune with a child and understanding where they are from an emotional standpoint and what they can handle, some of the educational things can be put on the back burner during that really highly stressful time. And then, of course, counseling resources. I know that we have those available here at Cook, too. We have therapists that work with children during and after transplant and also before transplant. Child Life can be super helpful, too, before transplant to help with the preparation phase.

(42:40): [Mary-Clare Bietila]: Okay, great. "Do these cognitive defects get better as they get older?"

(42:48): [Dr. Beth Colaluca]: Not typically. What we tend to see is that the challenges are longstanding. However, if these children receive appropriate accommodations in school, they can overcome some of the difficulties. There's not any evidence that there's improvement, however, over time, it's just that children kind of learn to manage them and cope with them and learn ways around the challenges.

(43:17): [Mary-Clare Bietila]: Okay. Our next question is, "How do you help your child balance learning how to manage medical management for any chronic health issues and balance that with learning to manage academics and every day?"

(43:35): [Dr. Beth Colaluca]: Great question. Another great question. I mean, because these children have more to manage, don't they, than just your typical child that doesn't, I think, parental involvement is certainly helpful. I mentioned the academic coaches. There are what are called executive functioning coaches that are available, too, that might be really useful in the situation where a child has extra things on their plate. Just learning how to kind of decide what's most important at what times and those types of things. I think outside help would be super helpful in this situation.

(44:14): [Mary-Clare Bietila]: All right. So the next question is, "How do you help a teen figure out their best path forward?" They've got learning challenges, they're finishing up high school, do you encourage them just to go to college or tech programs, other, gap years? What do you think?

(44:33): [Dr. Beth Colaluca]: So some of that will depend on what we find from our testing. If you have a child that really was kind of at low risk going into transplant, doesn't have that many deficits, I would say, helping them just through a typical path, looking at available options, maybe some vocational exploration, deciding if college is the appropriate path for them. When a child has cognitive challenges... I work with parents on this quite frequently where I kind of look at what their capabilities are and what are some appropriate expectations for that child? So let's say you've got a child who has some intellectual deficits and college is just going to pose a significant challenge to them, then I may recommend looking at other paths. We do, in our area, have some... One of our community colleges has an excellent program for students that do have cognitive challenges. So that might be a route that I recommend for them as well. So I just kind of really look at the child's abilities and what their interests are and try to match that with appropriate goals.

(45:42): [Mary-Clare Bietila:] Okay, great. Are there exercises or apps that young people can use, like computer games to help them with attention?

(45:53): Dr. Beth Colaluca: So the million-dollar question. Yes, I think so. I think the evidence at this point suggests that there may be some strategies that can be helpful. When we look at the research, the literature kind of on cognitive remediation programs and things like that, the results are kind of equivocal. And I think it's probably because there's so many different variables, it's hard to get children that just have attention problems and they're matched on every other variable.

(46:24): So it's kind of difficult to figure that out, but there are some different strategies. I'm trying to think of some off the top of my head that have been useful. Cogmed, you may have heard of, it's a, I think, more of a working memory, but also works on attention. Really different games that kind of work on in increasing attention and processing speed can be useful. I just don't know that we've got really good results suggesting that we know that they're helpful. They certainly can't be harmful. That was a tough question to answer without hard data to support it. I think we're going to find in the future that there are things that help.

(47:10): [Mary-Clare Bietila]: Yeah. Gamification seems to be a very popular thing with goal setting apps and things like that.

(47:21): [Dr. Beth Colaluca] Yeah. That's something that needs to be further evaluated, but with technology, with advances in technology, there are certainly apps can help with compensating for some deficits. So I know I use my notes page to remind myself of things. So there's different things, we can put timers on our phones, we can do different things that help us remember things and things like that.

(47:45): [Mary-Clare Bietila]: There's some really great even TikTok channels that will have a person with, let's say, ADHD and they'll say how they organize the front of their house so they don't forget anything. And it's been really cool to see some of that. Mm-hmm. ADHD] is the one I'm thinking of.

(48:04): [Dr. Beth Colaluca]: Okay. I'm not a big TikToker, so I wasn't aware of that one, but I bet my teenager is aware of that. She just hasn't shared that with me.

(48:13): [Mary-Clare Bietila:] That's how I know, from my teen, my teen. You've got a couple more questions. Oh, this is a good one. "So strategies for an adolescent who with a very slow processing disorder and they're learning to drive, any strategies or advice for that?"

(48:30): [Dr. Beth Colaluca:] Whew. Yeah, that's a tough one too. So there are what are called driving safety evaluations. I know in Texas, I give a list out to some of my families for this particular issue, because that is a huge concern, obviously. You have got to wonder if a child is going to be able to react in a tense situation, something where it's quick acting. So I would recommend driving safety evaluations in that situation. It may be that it's just not in that child's best interest to drive or that maybe they can limit their driving to around town, that kind of thing. So that is a really tough one because neuropsychological testing doesn't assess driving per se, but we obviously look at different variables that can affect driving, such as processing speed, attention, attention problems, absolutely, that can be an issue.

(49:24): [Mary-Clare Bietila:] Okay. So we're looking at older adolescents, those going to college, we had a couple questions about programs that colleges might have for students with learning challenges and how did neuropsych evaluations work in the college setting?

(49:42): [Dr. Beth Colaluca]: Okay. Excellent question. Most colleges... And I do this with my patients too, in Texas, we have so many different colleges, I can't remember, from one to the other, what kinds of accommodations are provided. So what I'll do is I'll look up on the web that particular college and go to the disabilities' office or whatever it's called in that particular college and look at what available accommodations are. And then I'll look at what kind of documentation is required for the student to receive those services. Some schools are even particular about what tests they want us to administer. So I follow that if I need to, for a particular patient. So neuropsychological testing can be extremely helpful in that process because it provides the documentation needed to get the services. And the colleges, as I mentioned, one of our local community colleges has really good programming for children with different types of disabilities. So asking around your state and finding programs that are available, they're out there. Social workers can be helpful in determining a good match for your child too. So just, again, evaluating different resources.

(50:55): [Mary-Clare Bietila]: That's great. Is it wise to disclose when a child is applying that they would need those services?

(51:03): [Dr. Beth Colaluca]: Another slippery slope. It kind of depends. It depends on the severity of the problem, probably. For example, children and adolescents who receive 504 services for ADHD in high school, those get transferred pretty easily to most colleges and really doesn't affect programming. Children can get their bachelor's degree. I know several MDs that have had ADHD and they got accommodations throughout school. So, I mean, it kind of depends on the severity of the problem and how much the accommodations are needed to actually make that person successful. So I don't think it's a detriment in most cases.

(51:48): [Mary-Clare Bietila]: And I would say, on college tours, they seem to show you those places on campus where you can get more help. And-

(51:56): [Dr. Beth Colaluca]: That's great.

(51:57): [Mary-Clare Bietila]: Legally get the services that if you're at a state school, you can get.

(52:05): [Dr. Beth Colaluca]: Right. Excellent.

(52:05): [Mary-Clare Bietila]: This is going to be our last question.

This person says, "My teen son has a lot of fatigue after transplant and is not doing well in school, the workload is just too much for him and he is shutting down. How do I motivate him to continue?"

(52:25): [Dr. Beth Colaluca]: So probably two things here. The first one is I would ask for modifications. If the workload is too much, maybe he can get some modifications in his work. If he is keeping up academically, and let's say he has 50 algebra problems, but we can knock it down to 25 and he still understands the concept, why not do that? Why not reduce that load? Fatigue is a huge issue. I do hear that from plenty of my families too, so why make him work twice as hard when he's understanding the concept? So I would look for accommodations, that could be under 504 even because you're not asking for the curriculum to be modified, just that he get less work.

(53:04): Other things that you can work on with him, making sure that he's getting good sleep, good sleep hygiene, proper nutrition, good exercise, all those kinds of things, just keeping up his general health would be ideal. I don't think it's his fault he has the fatigue. There may be some emotional factors involved too. So maybe trying to determine if that's the case, testing can help tease that out too. And maybe determine if maybe he's a little bit depressed, because sometimes we'll see either fatigue causing depression or depression causing fatigue, right? So that could be something else that's contributing as well. So just looking into other factors that could be contributing.

(53:45): [Mary-Clare Bietila:] Absolutely. Oh, this is so helpful. Great questions.

(53:49): [Dr. Beth Colaluca]: Yeah. Really good questions.

(53:50): [Mary-Clare Bietila]: Closing. On behalf of BMT InfoNet and our partners, I'd like to thank you, Dr. Colaluca, for your very helpful remarks and thank the audience for these excellent questions, just like we said. Enjoy the rest of this symposium. Have a good afternoon.