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GLOBAL Roundtable at DSDN Rockin’ Moms Retreat Questions & Answers

Global Down Syndrome Foundation
Roundtable at DSDN Rockin’ Moms Retreat 2022 Q&A

What Parents, Self-Advocates & Caregivers Should Know

Friday, September 16, 2022
DSDN Rockin’ Mom Retreat, Gaylord Resort, Washington, DC

DISCLAIMER: The Global Down Syndrome Foundation’s employees and/or volunteers are NOT acting as your medical professional or attorney. Responses you receive via electronic mail, phone, or in any other manner DO NOT create or constitute a doctor-patient or attorney-client relationship between you and the Global Down Syndrome Foundation (GLOBAL), or any employee of, or other person associated with, Global.

Information received from GLOBAL’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. GLOBAL DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.

Q1: I would like to know more about quality of life for adults with DS in regards to later life (40 and up).              

A1: I propose that quality of life in old age is linked to a good diet, exercise, good sleep, and socialization/stimulation.

 

Q2: What kind of jobs can we expect our children to be able to have?   

A2: The answer will vary greatly from one person to another, but nowadays we are seeing individuals with Down syndrome holding various positions across a range of industries.

 

Q3: Will my child need a payee or guardian as an adult? What is the best way to prepare for her future with regards to this?        

A3: There are many different options to help support adults with Down syndrome, including full or partial guardianship, although these are not the only options. Supporting the child’s strengths and independence over time is very helpful to prepare for the future.  Transition planning should start early, far before adulthood to help prepare. There are many resources that are state specific that can be useful guides.

 

Q4: Redirecting doesn’t seem to work, how to increase awareness of surroundings and danger with a stubborn child?  

A4: Without knowing how old your child is or if your child is getting into dangerous situations because of lack of awareness or because they are trying to get your attention, I will offer a few ideas. If your child is trying to get into dangerous situations to get your attention, try proactively giving lots of attention when in situations where your child might try to touch something hot or run from you. If it is more that you feel your child doesn’t understand about danger, visuals can be a great way to help kids understand where danger lies. Consider using a red laminated stop sign for things that you don’t want your child to access and green go signs for things that they do have access to. Each time you are walking past any of the signs, point out that they can touch or not touch. You can pair pointing to the sign with sign language or words that you know your child understands.

Q5: I would like to learn more about how to help my child meet his sensory needs in a way that is acceptable and safe.       

A5: I would encourage you to consult with an occupational therapist who specializes in sensory processing. They can make suggestions and even create a “sensory diet” which involves scheduled times of getting sensory input.

 

Q6: We move regularly and have to re establish care. I’ve had a range of experiences with different therapists and I’d be curious if there is existing guidance for choosing therapists. For example, I went from one PT who told me kids with DS can do everything as long as they’re taught to a PT who told me he will always be atypical so why focus on doing something the right way.            

A6: I’m so sorry to hear you have had such different experiences. Unfortunately, the best guidance I can give you is that a therapist that is positive and focuses on helping each child work to their potential is the best therapist. Each individual with Down syndrome has varying capabilities and no limit should ever be set on what that person is capable of achieving. Goals should always be set based on a starting point of where an individual is and future goals should work the person forward from there. Extremes (saying anything is possible or nothing is possible) are not good in any situation, whether the person has Down syndrome or not. Good luck and I hope you find a therapist that sees your child’s potential.

 

Q7: How to know if a delay in behavioral issues is affected or impacted by having Down syndrome or if child is just being defiant.            

A7: It is always important to first and foremost consider the complexity of Down syndrome and all the different things that can present as behavioral problems. Medical issues, learning a new skill, fine motor difficulties, comprehension issues, etc. all can impact behavior. If we first think of behaviors in this way and not just as defiant, we are much better equipped to try out possible solutions, rather than dismissing something as unchangeable. For example, if a child is being defiant when a new skill is being introduced, consider whether the current expectations for doing the skill may feel too hard. It doesn’t mean you give up, it just means that you revise the starting goal. We all want to feel like we are making progress and progress motivates us. If something is too hard for any of us, we are more likely to give up or become defiant, rather than persisting. Defiance is communication and just means that we have to get curious to find a solution.

 

Q8: Tips to help them to stop hitting when trying to get attention          

A8: Hitting for attention typically means that the child is feeling like attention is only being given when hitting occurs or that the most attention is given when the child hits. Rather than just ignoring the hitting (which is often recommended in more traditional behavior therapy), let’s revise the plan and give lots and lots of attention when hitting is not occurring (“I love how you are using gentle hands.” “I feel so happy when you are using soft touches.”)

 

Q9: How to handle tantrums?   

A9: Tantrums can happen for so many different reasons. The best advice I can give is to first get curious and start noting when the tantrums are occurring. Is it when you take something away? Is it when your child is not understood? Is it when they are trying to get attention? The answer to the question “What seems to be the reason for the tantrum? Or “What purpose does the tantrum serve?” will give you lots of good options for how to handle it. For example, if the tantrum is happening because something is being taken away, consider trading for something that the child is able to have, rather than only taking away the item.

 

Q10: Sibling rivalry?      

A10: This is a very complex question. I think the first step is to understand when and why the conflict occurs. The why could be a skill deficit with sharing, difficulty with communication, the sibling feeling like the child with Down syndrome is getting away with too much. Once you know what the reason is, then think about how you can teach that skill or address the issue in the most concrete way.

 

Q11: Interested in information regarding dual diagnosis and studies for individuals also on the ASD spectrum          

A11: Screening for autism is recommended between 18-24 months of age for all individuals, including those with Down syndrome.  A further understanding of how autism may present in individuals with Down syndrome is an active area of research.

 

Q12: How do we know if certain behaviors are just normal for a child with Down syndrome or because they may have a dual diagnosis of Autism and Down Syndrome?     

A12: An expert clinical evaluation is recommended to help determine whether certain concerning behaviors in Down syndrome may be indicative of a dual diagnosis of autism and Down syndrome. It is critical to consider the child’s overall developmental functioning and their social communication skills relative to overall developmental functioning.  

 

Q13: Is Down syndrome an autoimmune disease?          

A13: Down syndrome is not a disease, but rather a genetic condition, which involves a very high risk of developing one or more autoimmune conditions. 

 

Q14: How do I balance inclusion with allowing her to be with her developmental peers?                

A14: The question to always ask yourself is what is the goal of the situation in which you are placing your child is. Sometimes, no different than a child with dyslexia or a specific learning disability, our kids need extra help to learn a specific academic task. It can be learned with a teacher or para individually and then applied within an inclusive environment (this is just one example). The more you have a clear goal for whatever situation your child is in (learning to follow a routine and follow directions in a general education classroom for example), the better the outcome.

              

Q15: What are “standard” testing or medical care items and milestones we should be aware of?

A15: The AAP has guidelines for health care supervision for children and adolescents with Down syndrome.  There is a family friendly version with age-based checklists on the healthy children website:

https://www.healthychildren.org/English/news/Pages/aap-updates-recommendations-for-care-of-children-with-down-syndrome.aspx

 

Q16: Should my toddler be on a different diet due to having Down Syndrome? 

A16: There are no specific special diets for people with Down syndrome. A healthy well-balanced diet is recommended.

 

Q17: Is it still recommended to screen for AAI prior to starting certain activities/sports?              

A17: Screening for symptoms is recommended, however cervical spine X-rays are not routinely recommended to screen for Atlantoaxial instability

 

Q 18: How much information about the AAP guidelines should a parent of a child with Ds know and fully understand?      

A18: It is great for families to be well informed and to be able to share resources with their providers.  Even printing out the AAP guidelines or the reference for your clinician can be very helpful, or visiting the healthy children website for family-friendly checklists:  

https://www.healthychildren.org/English/news/Pages/aap-updates-recommendations-for-care-of-children-with-down-syndrome.aspx

 

Q19: Why is life span for people with Down syndrome shorter than typical people?       

A19: Heart and lung disease are the most common causes of death for people with Down syndrome. The average life expectancy is now in the 60s, and expected to continue to increase.

 

Q20: Are people with Down Syndrome more susceptible to getting sick than typical people?              

A20: People with Down syndrome are more susceptible to some medical conditions but not others. For example, people with Down syndrome are more likely to get severe COVID-19, but less likely to get solid cancers. 

 

Q21: Why is Down Syndrome becoming more common among women under 35?          

A21: While the chances of having a baby with Down syndrome can increase after age 35, since the majority of people having babies in the US are under 35 years old, more babies with Down syndrome are born to parents under 35. 

 

Q22 : Is it safe for our children to get the Covid booster?             

A22:  Yes and it is always best to speak with your child’s medical provider about any questions you might have.

 

Q23: Medical and therapy providers vary greatly. Is there a particular certification medical professionals may have to identify their experience and interest in working with Tri-21 kiddos?

A23: While there isn’t a provider certification, there is a professional organization called the Down Syndrome Medical Interest Group that medical provider who care for or have interest in Down syndrome can join to learn from each other. Also, a provider seeing a child with Down syndrome should use the AAP Guideline. 

 

 Q24: Do humans with Down Syndrome age more quickly than typical peers?  Is there anything I can do to improve life expectancy and quality of life?              

A24: Yes. There is much that can be done to promote healthy aging, particularly in the realm of a goo diet, exercise, good sleep, and strong socialization and stimulation. 

 

Q25: We are a military family.  Our healthcare is run by the Defense Health Agency (DHA).  Are you connected and do you reach out to DHA about research opportunities?

A25: Currently, we are not connected to the DHA to my knowledge, but anyone can find or share research opportunities for people with Down syndrome by visiting the INCLUDE website here: https://www.nih.gov/include-project        

 

Q26: I’m from an area where most of our services we have to go another state. How can we advocate for more services within our state to help with travel.       

A26: Work with your local Down syndrome clinic in your state to identify if there are any local providers with a special interest in serving the DS community here: https://www.globaldownsyndrome.org/about-down-syndrome/resources/local-organizations/

 

Q27: Is there an international protocol to follow when a child is born with Down syndrome?        

A27: The new AAP Guidelines covers medical care, but there is not an internationally shared protocol because chances are the resources, environment, attitudes and more will impact the care the child receives.

 

Q28: Any suggestions on potty training to get child to actually go (he already has the whole routine down other than actually going)? Also any suggestion on how to teach them to listen and do behaviors for safety purposes (holding hands, not running in parking lots, etc.)?    

A28: The question I would ask is whether your child is being taken on a schedule that is opposite of the natural times he is peeing. You can start out by maybe tracking how often he is wet (check his diaper every 15 minutes for a few days, document it, and then change him). Then, based on that data, you can create a schedule to take him when you think his bladder is the most full and he might even “accidentally” pee in the toilet.  That will help him make the next connection of pee going in the toilet. If he has trouble initiating urinating (which I have seen too), consider running the faucet or placing some warm water on his privates to help the urine stream start.

 

Q29: How do I know when to start potty training? Signs/cues? Different than a typical peer?   

A29: I feel that steps towards the potty training process (sitting at regular intervals of time or during transitions) can occur as soon as the child can safely sit up on their own on a training toilet or insert on a regular toilet and when there is not any major medical issue that is being addressed (think surgery). You can always start working on learning the routine of toileting even before the child is able to fully hold their urine or produce something in the toilet.

 

Q30: What is the biggest advice on how to get them to start sitting on the potty more often?

A 30: Make it a part of the routine and start during natural transitions. It is much harder to get kids to go sit on the toilet when they have to leave something they are doing, rather than going between activities. For example, start by having them go right when they wake up, before sitting down for meals, or before bedtime. Use a “first-then” directive to tell them “first sit on the potty, then (a preferred activity).” Expect that your child sits on the toilet, but don’t worry about how long to start. You can always gradually increase the amount of time that they sit on the toilet by using a visual timer.

 

Q31: What type of rewards do you recommend?            

A31: I do not recommend food rewards (unless it is the absolute last resort). Activities, games, reading books, getting to choose something to do with a preferred adult, singing, dance party, a preferred toy, all work really well.

 

Q32: My child is potty trained but rarely initiates going on his own and still has bowel accidents; how can I help him with this?             

A32: The first question I would ask is whether she has awareness of her bladder being full. This requires a lot of introspection and sometimes can be difficult for our kids. If she doesn’t have that awareness, it is important to draw her attention to the urine stream by narrating that she is making a lot of pee or helping to tell her how a full bladder feels. If you think that she does know when she needs to go but is just not telling you, you could switch to rewarding her when she is dry, rather than for going to the bathroom. For the bowel accidents, I would start paying attention to when they are occurring and the consistency of the poop. If kids are constipated or their stool is too loose, it can be very difficult to feel the sensation that poop is coming, which then results in accidents.

 

Q33: How to potty train a non verbal toddler?  

A33: I would first work with a speech therapist to determine what the best method for communication is (expressively and receptively). Then, we can use those strategies (visual supports and schedules, sign language, etc) to create the same type of method for helping to teach what you are asking your child to do. I have lots of non-speaking children who do great with toilet training!

What supports you can give a daycare for potty training. I am a big fan of writing out your home plan and then walking through it with the daycare. It can also be helpful to spend a few hours at daycare to even model what you are doing with your child at home. The most important piece is making sure that your strategies are consistent across settings.

 

Q34: My son seems to understand and have control over producing pee into the toilet, however it often seems he doesn’t fully empty his bladder. Is this a common challenge you’ve noticed when potty training children with Ds? Do you have suggestions on how to help my child fully empty his bladder while sitting on the toilet?             

A34: In my experience, many children do not fully empty. This could be due to a lack of awareness that there is still urine in the bladder or because they are wanting to go back to the more fun activity that they were doing before. One strategy could be to have your son stand up and then sit back down once more to “make more pee”. Verbally cuing him to do that can also be helpful in making sure that he understands that he can’t leave until he has more fully emptied.

 

Q35: My child is potty trip trained.  How do I get my child to indicate she has to use the bathroom?        

A35: The first question I would ask is whether she has awareness of her bladder being full. This requires a lot of introspection and sometimes can be difficult for our kids. If she doesn’t have that awareness, it is important to draw her attention to the urine stream by narrating that she is making a lot of pee or helping to tell her how a full bladder feels. If you think that she does know when she needs to go but is just not telling you, you could switch to rewarding her when she is dry, rather than for going to the bathroom.

 

Q36: My son just turned 6.  Up until now he has shown zero interest in going potty on the toilet or really any awareness of it at all.  He has recently started removing his diaper when he is poopy particularly and trying to clean himself up.  This causes a big mess.  He is nonverbal and I am just asking for some information on potty training him and ways to prevent or stop this diaper removal behavior. 

A36: That is so great that your son is showing signs of toilet training readiness!  So here is how I would address it. I recognize that what I will be suggesting is intense, but I do think that this is the best method for helping him learn a different method for communicating that he needs to be changed. So there are two methods to consider. One is to put him in backwards footie pajamas with a zipper or something that he can’t take off. Then, when you notice that he is trying to take the clothing off or that he is squirming, you are going to teach him the sign for diaper or show him how to hand you a clean diaper from a stack that you keep nearby (unless there is a different method of communication that you are already trying out). As soon as he does the sign or brings you a diaper (you can teach by modeling or using hand over hand assistance), immediately take him over to change him. Give him lots of praise (“great job telling me you went poop!”). This may take a while for him to get into the routine of doing. In the meantime, you can also start to sit him on the toilet at natural transitions during the day to help him even accidentally go in the toilet. The second option is the same as the first except that you don’t put him in clothing he can’t take off. Instead, you keep him in line of sight at all times and immediately follow the above procedure as soon as you see him reaching for his diaper.  The key is that you are teaching him to communicate that he needs help being changed. In the meantime, you can also start sitting him on the toilet for short periods of time. If you know when he typically has a bowel movement, you can also proactively sit him on the toilet around that time. Hope that helps and good luck!

              

 Q37: Anything about supporting puberty and birth control options, anything about supporting healthy aging.

A37: Here are some great resources to help learn about puberty and birth control options, and support healthy aging.

  • Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality by Terri Couwenhoven
  • The Girls Guide to Growing Up/The Boys Guide to Growing Up”” by Terri Couwenhoven
  • The Facts of Life and More by Leslie Walker-Hirsch (http://www.lesliewalker-hirsch.com/publications/purchase.php)
  • The CIRCLES curriculum teaches about intimacy and relationships including social boundaries and is appropriate for classroom and home discussions: (http://www.stanfield.com/family-life.html)
  • Boyfriends and Girlfriends a Guide to Dating for People with Disabilities by Terri Couwenhoven.

 

 Q38: How to help Girls with DS navigate their periods   

A38: The “Healthy Bodies Toolkit” (versions for Boys and for Girls) available for free download at (http://kc.vanderbilt.edu/healthybodies/) provides instructional information for families and young people with intellectual disabilities and includes visual supports for issues such as privacy, hygiene, etc.

 

Q39: Can you speak to the AAP guidelines for DS and puberty?  Delayed?  Early?            

A39: Puberty proceeds in a typical fashion in individuals with DS, although for some it may be early or delayed, just as it may in people without Down syndrome.

 

Q40: Any research or pertinent studies for infants and toddlers regarding development or milestone tests/blood work that I should be advocating to have completed for my daughter            

A40:  The AAP has guidelines for health care supervision for children and adolescents with Down syndrome can be found here:

https://www.healthychildren.org/English/news/Pages/aap-updates-recommendations-for-care-of-children-with-down-syndrome.aspx

 

Q41: There is research coming out of Denmark showing a high likelihood of a connection between Down syndrome and Ketotic hypoglycemia. Have they seen it, and if they have how are they implementing screenings within our population since we know the same population can experience hypoglycemic unawareness? https://onlinelibrary.wiley.com/doi/10.1002/jmd2.12241?fbclid=IwAR2SbI6ODlK6-0RRhKj2Zx8j8Uo3OAJ9Qyr9pPAFqey2iyLBj84BCd-YCtY

A41: This study out of Denmark showed that in a survey of 139 individuals with Down syndrome, 10 (or 7.2%) had documented episodes of hypoglycemia or low blood sugar, accompanied in some cases with increased levels of ketosis, a marker of abnormal metabolism when the body burns fat rather than sugar to for energy. This can result in lethargy and irritability. This is an interesting finding and one that should be followed up. It suggests that those with Down syndrome may have a harder time adjusting to stress on their bodies (such as during an infection or illness) that results in low blood sugar. The treatment of hypoglycemia is relatively straightforward (such as feeding small frequent meals or providing sugar or juice to the person). I hope that more doctors will think about this as a potential explanation and treatment option for individuals with Down syndrome who have unexplained episodes that might be related to low blood sugar. This is a finding worth additional study so we can better understand how people with Down syndrome react to episodes of fasting since we know that many of them have differences in how they respond to metabolic stress.

 

Q42: As a parent, how can I best make a positive impact for the larger Ds community and future families?

A42: I recommend that families get involved, stay engaged, and keep asking questions. Look for opportunities to partner with your child’s healthcare providers and your local Down syndrome organizations. Let us at NIH know when there is something you and other moms and parents are noticing that needs research attention. Believe it or not, we listen. For the 2022 NIH INCLUDE Down Syndrome Research Plan, we issued 2 calls for comments (known as “Requests for Information” or “RFIs”) and we read all of those responses and incorporated them to the best of our ability in the final research plan. Some examples of research projects where parents and families have played a major role in stimulating research have been in families’ desire for a home-based sleep study option to measure symptoms of sleep apnea rather than requiring an overnight hospital stay; concerns about Down syndrome regression disorder, which is now being studied through an NIH-supported clinical trial; studies to identify the most effective and safest chemotherapy treatments for children with leukemia, which found that lower doses were safer for children with Down syndrome; and recognition that some co-occurring conditions such as ADHD (hyperactivity) are more common in Down syndrome than the general population.

 

Q43: What advances do you foresee in the coming decades? Where may we be compared to where we are today?              

A43: Some of the future advances that I envision for people with Down syndrome focus on three main areas: improved understanding of the causes of co-occurring conditions in those with Down syndrome, development of therapies for these co-occurring conditions, and potential preventive approaches for some of these conditions. One of the areas of research where we are working hard is to create better clinical outcome measures, which will allow us to measure changes in function, such as changes in cognitive abilities or sleep or other issues that would allow us to see an effect of interventions. The NIH INCLUDE Project (https://www.nih.gov/include-project) is funding clinical trials to test therapies that may prevent the development of Alzheimer’s disease in adults with Down syndrome. We are also studying treatments for the autoimmune conditions and regression disorder in Down syndrome, and we are supporting several clinical trials to better characterize and treat obstructive sleep apnea in Down syndrome. The INCLUDE Data Coordinating Center (https://includedcc.org/)  is collecting data from all the different NIH-funded cohort studies of groups of children and adults participating in Down syndrome research so that we can learn as much as possible about Down syndrome across the lifespan and understand what issues exist for those living with Down syndrome at different stages of development. Finally, I am hopeful that in the future we will develop some options for prenatal therapies, such as a medication that a pregnant mom could take that may help optimize outcomes for her baby born with Down syndrome. I’m very hopeful, but all these treatments and interventions depend on families participating in research in order to help future generations of children with Down syndrome lead their best lives!

 

Q44: Are there opportunities for our children to participate in research studies? If so, how can we find them and sign our kids up.

A44: One is by participating in DS-Connect®: The Down Syndrome Registry (https://dsconnect.nih.gov/). This online registry is supported by the National Institutes of Health to connect families with research projects of interest to them. DS-Connect collects basic health and demographic information about the person with Down syndrome through a number of surveys. If an approved investigator has a study that the family may qualify for, they are sent a study notification by the registry coordinator, and they can choose whether they wish to participate or not—it is entirely their choice. The registry never shares personal information with researchers. DS-Connect also provides resources such as lists of healthcare providers who work with people with Down syndrome and Down syndrome-specific growth charts to track height and weight in children with Down syndrome. And, DS-Connect has links to NIH-funded Down syndrome clinical trials (listed at ClinicalTrials.gov and on the registry website) and other Down syndrome studies.

 

Q45: With the understanding that Targeted Nutritional Intervention “providers” often use predatory tactics and promote untested supplements, is there any truth to their claims that nutrition and supplements could be used to assist brain function in people with Ds?               

A45: The question acknowledges the lack of strong scientific evidence behind some of the claims in the field of nutritional intervention. With that being said, the accepted pillars of healthy brain function, specially in older adults are: good diet, exercise, good sleep, and socialization. And by good diet I refer here to a balanced diet that is rich in fruits, vegetables and unprocessed foods.

 

Q46: The INCLUDE data project only has a generic field for cerebrovascular disease. Will something more specific be included to track rare conditions like moyamoya that are more prevalent and less well known for people with Down Syndrome?           

A46: Yes! As the INCLUDE Data Hub evolves and grows, it will enrich the clinical data provided to have more granularity and detail. 

 

Q47: What non-invasive markers are best used to track immunological or cerebrovascular conditions or raise awareness of potentially undiagnosed conditions like DSRD or others?              

A47: There are many biomarkers of inflammation and cerebrovascular disease that can be monitored in a blood sample and also in a sample of cerebrospinal fluid (CSF). In the case of DSRD specifically, CSF biomarkers may be more useful that blood-based biomarkers.

 

Q48:  Besides cerebrospinal fluid there seems to be some progress in urine markers but the research tends to calibrate study groups that represent the general population and not patients with Down Syndrome. Medical personnel also don’t seem to get this information passed along to them so where can parents look for resources?               

A48: It is hard to answer this question without knowing what exact ‘markers’ are we referring here to.  Nevertheless, the comment about needing to have reference values for Down syndrome is important. Additional research will be needed to define the ’normal ranges’ of many clinical laboratory values in the population with Down syndrome.

 

Q49: Please discuss hypoglossal nerve stimulation for sleep apnea and any speech improvement.

A49: The hypoglossal nerve stimulator is an exciting new potential treatment for obstructive sleep apnea. So far it appears to be safe and effective.  Current research is looking at whether it may result in other developmental improvements, such as speech improvement. More information about studies regarding the hypoglossal nerve stimulator can be found at clinicaltrials.gov

 

Q50: Would love to hear about sleep apnea solutions for young children.

A50: Sleep apnea can be treated with: surgical approaches, often removal of tonsils and adenoids, or other more complex surgeries; CPAP: continuous positive airway pressure; in mild cases: intranasal steroids.

Q51: How many children actually have sleep apnea that don’t show obvious signs when observed for a short time by parents? (No snoring, breaks in breathing, gasps for air, etc)              

A51: One of the reasons that a sleep study is recommended for all children with Down syndrome between the ages of 3-4 years is because a high percentage (often more than half!) may have sleep apnea but not show any obvious signs when observed by parents.

 

Q52: Can low tone be improved on? My child does not have functioning hand usage. Although we go to OT, the improvements are so minimal. Also how do I get my child not to be frustrated when she can’t do something but she wants the independence to do it.   

A52: Physical therapy and muscle strengthening exercise can help to build tone. Often, muscle tone increases over time. Teaching to ask for “help” or “do together” with fading adult support over time to build independence can be useful.

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