Friday, March 1, 2013
Therapeutic Listening
Neurodevelopmental Treatment: Just One Piece to the Puzzle
Neurodevelopmental Treatment: Just One Piece to the Puzzle
Results from a recent study indicated that neither of the 2 treatment models [Occupational and Physical Therapy and Neurodevelopmental Treatment] that are commonly used with young children with motor impairment was effective in enhancing children’s rate of motor development or quality of movement, at least over a 1-year time period. These findings add to an increasing body of literature indicating that contemporary motor intervention procedures are not adequately meeting the hopes and vision for motor intervention. These findings also serve as a call for the field to explore alternative treatment methods for providing services. In particular, there is a need for greater involvement of parents in intervention. There is also a need for a renewed research agenda that explores issues related to the intensity of services and dynamic motor theory. Funding models need to be modified to encourage recommended and innovative motor intervention practices.
We'd love to hear your experience with a therapy that you have found worth the time, money and energy please write to options4DS@gmail.com.
Why I Chose Neurodevelopment Therapy For My Daughter
Why I Chose Neurodevelopment Therapy for my Daughter
I was pleased. Surely starting these interventions so early would give her a great start. Our daughter was fortunate to have the same occupational and physical therapists until the age of three, both of whom were wonderful and caring.
As is common here, she had occupational and physical therapy about every six weeks, with activities to work on at home between each session. I was told that the purpose wasn't to help our daughter to reach her milestones faster, but to help prevent her from developing bad habits while reaching those milestones. Our daughter's therapists meant well and I respect them in many ways but they still had the commonly held belief that "kids with Down syndrome will reach their milestones in their own time". I struggled with this because as my beautiful little girl was encouraged to reach her milestones "in her own time", typical babies were already starting to progress faster.
I am a compulsive researcher and when the usual books that are recommended for babies with Trisomy 21 did not reveal the answers I was searching for, I kept looking. I turned to the internet next and after some searching, started to hear about some kids with Trisomy 21 who learned to read and do math when they were only preschoolers. As they grew up these kids were smashing preconceived notions about Trisomy 21. I admit that I was very skeptical at first. Until this time I had never heard of any child , genetically enhanced or not, being able to read at the age of three or four. Skeptical as I was, I was also intrigued and spent hours searching to the furthest, cobwebbed corners of the internet to learn as much as possible.
By this time, my daughter was around six months of age. I was still skeptical but I reasoned that even if my daughter didn't learn to read as a preschooler showing her flashcards with words and pictures would allow her to spend more time face to face hearing me speak and talk about the cards. I included pictures on the back of the cards, so if nothing else, she would learn the meaning of the words along with the vocabulary. At the time it felt like a giant leap of faith and it wasn't until a couple of months later that I finally shared this "far fetched" notion with my husband.
As I continued with the reading program I decided to start some other aspects of neurodevelopmental therapy and ordered some books on the subject, gradually implementing my own program. One of the next activities I introduced was a crawling track, and while I had to wait quite a while to see the results of our reading program, the crawling track gave us positive feedback within a very short time. We built the track daughter was about 7 months and she was crawling at eight months of age.
This was the first real success that told me that our decision to pursue a neurodevelopmental program was having a posiitve impact. According to several milestone charts, on average, kids with Trisomy 21 crawl at fourteen months while typical kids crawl at around 10 months. While it is difficult to give absolute credit to our daughter's neurodevelopmental program for all of her achievements, I have no doubt that her mobility was greatly improved by her crawling track. The reason that learning to crawl is so important to me is that a whole new world is opened up to a baby who is mobile. All of their senses are stimulated as they see and feel new things while exploring through crawling. This initial success spurred me on to research and implement more neurodevelopmental activities.
My husband and I were very careful not to test our daughter during this time. We provided lots of input but because we wanted learning to be pressure free, fun and the start of a lifelong love of knowledge , we did not test. It was a long year and a half wait but shortly before our daughter turned two she started to read words out loud. By the time she was three and a half she read her first short story and, one year later, her reading vocabulary was tested at just below a fourth grade level. She is now a few months shy of her fifth birthday and although her reading vocabulary is higher she enjoys reading at about a mid grade two level for fun. She loves Robert Munsch and reads our quickly growing library of his stories regularly.
When our daughter was three we decided to pursue an evaluation with a neurodevelopmentalist. We now go three times per year for an evaluation and follow a program designed to meet her specific needs. We did a pretty good job with our home program but the professionally designed program is very well rounded and covers every aspect of her development.
As I said in the beginning I was very skeptical but, after researching and seeing the results of our daughter's program, it really makes sense to me that if all kids need some stimulation to progress that kids with Trisomy 21 would progress faster with even more. It is common knowledge that in past years when babies with Trisomy 21 were sent to institutions they did not progress nearly as well as those who were brought home and raised in loving families. I think the reason that neurodevelopmental programs are so helpful is that not only do they offer much more stimulation than a child would typically receive but they also help the child's brain to reorganize so that it is able to utilize that information better.
While we put a lot of importance on getting the daily activities on our daughter's program done we also do not stress if we have to take a day, or even a week off. If we don't accomplish as much of her program as we feel we should be able to on any given day we are okay with it and just start over again the next day. We are a busy family with four daughter's and feel it is important to balance our daughter's program with the needs of the entire family. We try to get most of the program done while our older daughter's are in school while other activities such as having our daughter read stories fit in well at other times like our bedtime routine. It can be difficult at times but we gradually getting better at creating a balance.
Today we are so grateful for the path we have chosen for our daughter. There are some areas that we still need to work on. For example, although we are able to understand her and she often speaks in 6 or 7 word sentences, we are working on her articulation. Physically she is doing very well and has always been either ahead of or at the early end on the Trisomy 21 milestone charts however it is noticeable in a group of her peers that she doesn't run as fast or jump as far.
On the other hand, academically, she is much more advanced than any four year old that I know. Besides reading so well she is doing math at about a kindergarten level and is able to find all of the continents and many countries on a map. She is able to communicate clearly and talk about everything from her recently conquered fear of heights to what happened today at preschool, what activities we did on a recent holiday and what her favorite clothing choices are. She is able to read a menu in a restaurant, order and discuss her choices with the waitress unassisted. Physically, she runs, jumps and her latest accomplishment is riding her tricycle. Our daughter goes to a typical preschool and has taken swimming lessons independently. She recently started playing T-ball and I'm sure the coach has no idea that she is sporting an extra chromosome!
We'd love to hear your experience with a therapy that you have found worth the time, money and energy please write to options4DS@gmail.com.
Therapy Books, Sites & Blogs
Online Therapy Videos
Important Nutritional, Oral Motor, Feeding and Language Ideas to Ensure Optimal Development of Your Child with Down Syndrome by Jill Rabin, MS, CCC-SLPSequential Processing and Alternative Treatment Methods by Neurodevelopmentalist, Alison Wimmer
Here are some great video clips from James D. MacDonald of Communicating Partners with tips to help your child express himself.
Free audio seminar on Neurodevelopmental Therapy by Kay Ness.
NACD (The National Association for Child Development) has a YouTube channel where they post neurodevelopmental videos, located here: NACD YouTube Channel
Early Intervention: Oral Placement Therapy for Children with Down Syndrome (3 GB full video) by Sara
Feeding Options and Oral Motor Methods: Paving the Way for Optimal Speech by Jill Rabin M.S. CCC-SLP/L IBCLC
Let's Learn - Reading Math and Fun StuffLearn and discuss fun ways to help your child read, do math, socialize, and play. Explore simple, logical strategies and activities which will increase overall retention of the information being presented. Sometimes the best teaching strategies are the most obvious.
Therapy Articles
The Oral Motor Myths of Down Syndrome(84k)
Communication Issues and Down Syndrome
From Isolation to Conversation: Improving Social Communication Skills
Recommended Books on Therapy
Children of Dreams, Children of Hope by Raymundo Veras
This book is great for inspiration. Dr. Veras talks about Down syndrome in children. He uses the methods by Glenn Doman to make these children part of their peers. Since this book was written in the early 70's it is quit amazing that he sees these "veras" children as children who can do more than be given up on or locked away in institutions
Fit Baby, Smart Baby, Your Baby by Glenn Doman and Douglas Doman
Glenn Doman-founder of The Institutes for the Achievement of Human Potential-along with Douglas Doman and Bruce Hagy guide you in maximizing your child's physical capabilities. They clearly explain each stage of mobility and show how to create an environment that will help your baby more easily achieve that stage. Full-color charts, photographs, illustrations, and detailed yet easy-to-follow instructions are included to help you create an effective home program.
Play To Talk: A Practical Guide to Help Your Late-Talking Child Join the Conversation by James MacDonald Ph.D. and Pam Stoika Ph.D. A guide for children of all ages. Teaches you how to communicate with your child and get him to communicate with you.
How to Teach Your Baby to Be Physically Superb: Birth to Age Six by Glenn Doman, Douglas Doman and Bruce Hagy
A plan of action to start doing at home therapy with your baby right away. The early development of mobility in the newborn baby is a vital part of his future ability to learn and grow to his full potential. The authors show clearly each stage of mobility and how to create an environment that will help the baby to achieve each stage more easily.
Early Communication Skills for Children with Down syndrome by Libby Kumin
This guide is based on Libby Kumin's thirty years of experience of working with children and adolescents with Down syndrome and their families. Dr Kumin draws on her vast experience to show parents how they can support and encourage their child's speech and language development from birth to age 6 (or when a child can form 2- to 3-word sentences). Parents and teachers learn how to work through characteristic challenges, including hearing loss, intelligibility issues, apraxia (difficulty planning oral-motor movements), or a slower pace of development. Families soon see that many children with Down syndrome are natural and willing communicators.
Gross Motor Skills in Children with Down syndrome: A Guide for Parents and Professionals by Patricia C. Winders
Has very helpful exercises in it to give our kids opportunities for physical development. As you go through the exercises, please keep in mind: our children should not be put into positions that their bodies (bones, muscles) may not be ready to support. Encouraging movement and giving them opportunities to put themselves into positions is great. If you are mindful of this idea, it's a safe book to follow.
Fine Motor Skills for Children with Down syndrome: A Guide for Parents and Professionals by Maryanne Bruni
Has activities to encourage fine motor skills from birth to early adolescence.
What To Do About Your Brain-Injured Child by Glenn Doman
If you are action-oriented, you can read this one later. But if you want to better understand the theory behind the Doman methods in order to get motivated, read it sooner. Would be a good companion to read while you work with How to Teach Your Baby to Be Physically Superb. Okay to get from the library rather than purchase.
Naturally Better Kids by Kristin Morrison
A great book that shares Kristin's journey as she struggles with her son, Griffin's diagnosis and finds answers to treat him. She has great ideas here, but it can be overwhelming at times since it's written in journal style instead of as a step-by-step how-to book. Be ready to cry and rejoice with her! She also has an immediately downloadable version.
How to Teach Your Baby to Read by Glenn Doman, Janet Doman
This is a super great book. You don't need to start this until your baby can identify pictures, but you need time to read it and to make or purchase the flash cards. If you are making them yourself, you need a couple of months to do it so you won't be overwhelmed.
How to Teach Your Baby to Swim
You can start this right away, if desired. If you believe you may encounter asphyxiation problems, you may want to leave this to a professional.
How to Teach Your Baby Math
You don't need to start this until you've started teaching him to read, but before two years old is best (although with DS, your window of opportunity may be longer). Again, you need time to read this book and to make or purchase the flash cards. After you've read How to Teach Your Baby to Read, you would only need to get this book from the library since it follows many of the same principles.
How to Multiply Your Baby's Intelligence by Glenn Doman and Janet Doman
Has some of the same information as How to Teach Your Baby to Be Physically Superb, but is different. You may want to look through them both and decide whether or not to get them both.
How to Give Your Baby Encyclopedic Knowledge by Glenn Doman and Douglas Doman
The Achievement of Human Potential has demonstrated that children from birth to age six are capable of learning better and faster than older children. This book shows just how easy it is to teach a young child encyclopedic knowledge.
Therapy Websites
Talk ToolsCommunication Partners
Therapy Blogs
In this blog, you'll find an organized place for therapy and biomedical information you need to care for your loved one with T21. Featured child, Jett, started reading at 17 months old and read his first book at 25 months old. He speaks with above typical enunciation and is healthy and active.
The Down Syndrome Action Plan
Occupational Therapist, Geralyn Spiesz, shares her success with her son, Lucas, who is doing very well.
My Place
Parent, Jenny Mars shares her therapy plan and success. Her son, now 18, has graduated with Honors from High School and has enrolled into their local Community College to study to be a kindergarten teacher.
Up Up and Away!
Parent, Laura started this blog hoping to inspire other parents to help their children with Down syndrome reach for the sky! Her daughter was reading words before she was 2 years old & reading books by 3.5 years. She believes kids with Down syndrome can do amazing things if we give them the right tools.
Therapy Forums
Baby Center's Unlimited Potential ForumA group of parents of young children w/DS who believe in their child's unlimited potential focusing on Neurodevelopment Therapy and biomedical intervention. You visit the website to read the past posts and then post as needed. Is visible to anyone. Not a private group.
Yahoo's Communication Support Group
Learn how to slow down and playfully interact with the goal of speech, with emphasis on teaching preverbal and communication skills.
Therapy DVDs
Parent Kit: Using Oral Placement Therapy With Your Child - TalkTools® This is a great DVD for parents to learn quality, at-home speech therapy. You can purchase the entire parent kit which includes all the tools necessary including a 3-hour DVD where Sara R. J. demonstrates how to use each of the tools at home. This is a link to just the dvd http://www.talktools.net/s.nl/it.A/id.1669/.f?sc=23&category=3356 . Talk tools works on building oral motor skills (muscles in the mouth) to build a foundation for speech production.
Communicating Partners DVDs: ECO I and ECO II and Shortcuts are great companions to or replacement for the Play To Talk books because they show you exactly what to do and how to do it. I'm a big fan of James D. MacDonald's techniques.
Therapy Blog Posts
Pursue Speech, not Sign on the Einstein syndrome website.
If you choose to teach sign language, here's a nice post to help you teach your child to sign by Gretchen Mather of Julian's Journey blog.
How to Spoon Feed from Down Syndrome: A Day to Day Guide blog.
Proper Breastfeeding for Down Syndrome from Down Syndrome: A Day to Day Guide blog.
Oral Motor Therapy from the Bits of Real Life blog
Oral Motor Therapy: The Jaw from Hannah's Shenanigans blog.
Oral Motor Therapy: Sucking vs. Suckling from Hannah's Shenanigans blog.
How to Spoon Feed from Down Syndrome: A Day to Day Guide blog.
Straw Therapy 1-8 from Bill and Ria's blog.
How to get your local Speech Therapists trained in Oral Motor Skills from Hannah's Shenanigans blog.
Therapy Facebook Pages
DS Day Today's Community Page
Connect with other parents who practice outside of the box therapy for their kids with DS.
The Kay Ness Group
Neurodevelopmentalist, Kay Ness posts tons every day on topics not always specific to T21, but ones that support a healthy lifestyle, proactive ideas and the latest research. If you don't have time to explore the internet yourself, let Kay do it for you.
Therapy Products
The complete kit Talk Tooks Apraxia kit w/instructions.
Speech Therapy for Apraxia NACD Home Speech Therapist
NACD's speech app for iPad works on syllable production for all of the different speech sounds (phonemes).
My Quest for Balance
My Quest for Balance
If we judge our lives by answering the question, “How well have you loved and how well have you been loved,” then the playing field is level for all of us, regardless of physical or intellectual strength. Lydia’s ability to love and be loved is grace from God. She’s fabulous at it! When I view life from this perspective, failure isn’t an option because I’m not in the picture. It’s not about me.
Here are some ideas you can try to help with the balancing act.
- “Do what you can with what you have where you are,” Theodore Roosevelt. I like to add, “And be at peace.” If organic veggies aren’t an option, rinse regular ones with vinegar and water. If one therapy is cost prohibitive, figure your next best option that fits the budget. If you need a mental health day at the beach, take it! Life is a journey to be enjoyed! Peace is healing. Balance is healing. Do what you can with what you have, where you are, and be at peace.
- Ground yourself daily. Chi gong, tai chi, yoga, meditation, prayer and exercise can help me stay grounded. When I took Chi gong, my instructor would not allow me to move the energy above my waist. My head swirls with constant thought and my heart overflows with emotions. I need to ground my energy every day to stay balanced. Earthing.org has products for grounding which also help reduce inflammation. Heartmath.org has a computerized program that also helps with grounding.
- Focus on the positive things you do every day. Write positive affirmations. “I’m getting better at balancing my life. I’m peaceful, knowing my child and I are doing our best. I enjoy my life and all the people in it.” What you focus on grows.
- Keep a gratitude journal. What you focus on grows.
- Take off the super hero cape! Do what you can with what you have where you are! (Theodore Roosevelt) And be at peace!
- Accept that there’s no “one right way.” Our kids are individuals and so are we. What works for one child might not work for yours. Shelve the perfectionism! Find what works for you. Do what you can with what you have where you are and be at peace! I also helps me to remember, “The less I seek my soul for some definitive, the closer I am to find.” The Indigo Girls.
- Gather your village! I don’t believe God intended us to do this alone. What friends, family, neighbors or strangers would love to help you? Humans have a need to feel connected. It’s good for them and it’s good for you. Can you organize things into manageable 1 hour tasks and ask for help?
- Sign up to get daily emails at flylady.org or buy her book. This is one of my favorites! Flylady focuses on establishing routines in your house so that cleaning doesn’t control your life. She is funny and wise. She believes “You are not behind. Jump in where you are with 15 minutes a day” and that is true with helping our kids also. “Perfectionism is shelved for 2012” – woot woot! Perfectionism is unrealistic expectations which can lead to crash and burn or feeling like a failure. I often laugh out loud when I read her emails.
- Laugh! Out loud if possible! Rent a comedy, sign up for a joke a day, giggle with your kids. Laughter is magic. It heals the soul.
- Eat well, drink water and take your vitamins. You are important and so is your health.
- Commit to no guilt. Guilt is a waste of time. You can’t change the past. Accept your humanness and move on. Do what you can with what you have where you are… and be at peace!
- Look at the slope of your child’s progress and not the day to day. It’s painful to miss milestones. It’s difficult to handle a really stinky OT report, consistently. Believe me, I know. It’s hard not to feel our child’s progress report isn’t our progress report. PLEASE TRY. Riding the rollercoaster of “Doing well here” “Not doing well here” is HARD!! And it doesn’t get easier!! By our request, Lydia’s energy and focus is tracked by her teachers in both the morning and afternoon. It helps me to identify when there is a health issue like a change in thyroid function, the beginning of an ear infection, etc. I used to ride the daily performance rollercoaster… holding my breath as I opened her notebook, hoping she did well that day. What insanity! Why the self torment? Everyone has rough days! If I focus on the slope of Lydia’s development, I see her amazing growth. If I focus on the nuances of single day performances, then I get caught with my super hero cape in hand, thinking I have control… driving myself crazy with unrealistic expectations. (God grant me the serenity to accept the things I cannot change courage to change the things I can and wisdom to know the difference.)
- Make time to do things you love. Need childcare? Swap babysitting hours with a friend. Organize a babysitting co-op. Sing. Dance. Paint. Walk barefoot. Nurture your soul.
- Host a “Family Cook Afternoon”. My kids, husband and I will brown 10 pounds of meat and make gallons of soup while listening to fun music. We set a goal, divide tasks, and reward ourselves when it is done. We freeze things in both family and individual size portions. This helps tremendously when time is tight for cooking.
- Nurture your relationship with your husband. Schedule regular date nights with your spouse. Share one thing you are grateful for about each other before bed. Language of Love is a good book to read. It helped me understand that my husband shows love through service – doing things around the house, while I show love through communication and shared activity. Understanding what we each need to feel love helped. Knowing my husband feels loved when I clean his office or put his laundry away completely changed my attitude. I can now view some mundane chores as loving service, where before I didn’t see that at all. He also realizes that I would much prefer going for a walk or talking instead of him finishing the dishes. A friend thinks I’m crazy. She would take the dishes! We all have our own language of love and I recommend you check this book out. It helps me understand my daughters’ language of love too.
- Stay present with your other kids and really listen to what they are telling you. My older daughters are very self sufficient. They do well in school, are responsible and have nice friends. It’s easy to take their development for granted. I need to remember that they need me too, even though it’s not always apparent. What insecurities are creeping up in their lives? What classes could they use encouragement in? Have my positive comments outweighed my nagging about the littered trail they leave behind? I try to make time to be present with them daily, and to tell them I love them every day. I try to own my mistakes and say I’m sorry. We watch Modern Family, play THINGS (great game for anyone who can write) kickball, Google jokes and laugh… laughter is good for everyone’s soul. I try to appreciate them each and every day because there are no guarantees for any of us.
Hypothyroidism
The thyroid is a butterfly-shaped gland found at the base of the front of the neck that releases hormones that play an essential role in functions ranging from conception and fetal growth to cardiovascular health, brain development, and metabolism [1]. Hypothyroidism (HT) is a condition in which the thyroid doesn't produce enough thyroid hormone. HT is not the only thyroid-related disorder found in those with DS – other less common ones include hyperthyroidism, benign or malignant thyroid nodules, and goiter.
Hypothyroidism usually occurs because of autoimmune conditions, congenital disorders, cancer, celiac disease or gluten sensitivity, iodine deficiency, poor nutrition, and the treatment of hyperthyroidism. The high incidence of thyroid disorders in people with DS could be from a malformed or under-developed thyroid gland at birth [2] or deficiencies in nutrients – such as zinc – needed for function [3]. Research supports a possible link between the Epstein-Barr virus infection and autoimmune thyroid disorders [4].
How common is hypothyroidism in the DS population?
While most medical literature reports a higher rate of hypothyroidism in the DS population than in the general population, the results vary because each study may use a different set of criteria to define hypothyroidism. One study showed 67% of infants with DS were found to have thyroid issues [5], another showed that 73.6% of children had problems [6], and some report that it may reach 80-90% in early childhood [7].
How is hypothyroidism in those with DS detected? Why is it important?
Interestingly, the symptoms of Down syndrome match that of congenital hypothyroidism. TSH or T4 lab test can not detect the type of hypothyroidism experienced by many children and adults with Down syndrome. Cellular hypothyroidism is the term used to describe what people with Down syndrome experience. The symptoms of this type of hypothyroidism are the same as those that a defect in the thyroid gland itself can cause.
The conversion of T4 to the active thyroid hormone T3 is imperative to the function of all cells. A second version of T3 exists, which is called reverse T3. It is a stereoisomer, a mirror image, of active T3 and is inactive within the cell.
Physiologic processes contributing to an elevated reverse T3 are low iron, low or high cortisol levels, inflammation, and oxidative stress. People with Down syndrome experience all of these processes. Active thyroid hormone is essential for the functioning of literally every cell of the body. Without it, people experience slow gut motility, slow growth, delayed cognition, and many other symptoms common to people with Down syndrome.
What are the symptoms of hypothyroidism?
Symptoms of HT include but are not limited to hypotonia (low muscle tone), dry skin, short neck, slow growth rate, delayed development, enlarged tongue, constipation, lethargy, and sometimes: a heart murmur and a herniated belly button [8]. These symptoms are all common to people with Down syndrome, making thyroid issues a top priority.
Since hypothyroid symptoms are similar to the common traits of a person with Down syndrome, some doctors believe that hypothyroidism is part of the cause of these symptoms and, when left untreated, can significantly worsen developmental delays [7]. In fact, the thyroid hormones even regulate neurogenesis (production of new neurons) [9], which is vital to people with DS.
A diagnosis should be made by considering classic symptoms such as slower growth, constipation, dry skin, lower basal temperature [10], and lab results [11].
Why should hypothyroidism be treated?
Treating the thyroid at any age is beneficial. The earlier, the better, since HT, untreated, can stunt growth, slow cognitive development, and impair digestion, which can further cause a cascade of developmental issues.
Studies found that 67% of infants with DS have thyroid issues. Before treatment with L-thyroxine, groups with high TSH were significantly shorter and heavier than those with normal TSH. After treatment, the height and weight did not differ between the two groups [5].
How is hypothyroidism detected?
There are two ways to detect, monitor, and diagnose the health of the thyroid gland. One way considers the symptoms, especially by taking the basal body temperature first thing in the morning. If the temperature is low and symptoms are present, HT is suspected. Monitoring classic symptoms such as slower growth, constipation, dry skin, lower basal temperature [9], and lab results [11] can guide the diagnosis.
The second way uses blood tests that analyze levels of thyroxine (T4) and triiodothyronine (T3), both of which are the hormones produced by the thyroid gland and the Thyroid Stimulating Hormone (TSH). TSH levels are higher than the healthy range when the pituitary gland tries to tell the thyroid to secrete more hormones because it detects low levels of T3 and T4 in the blood. Therefore, a “high” TSH combined with “low” T3 and/or T4 usually indicates hypothyroidism. Conversely, a “low” TSH with “high” T3 and/or T4 may mean hyperthyroidism.
Some pediatricians and endocrinologists refuse to treat hypothyroid symptoms because these traits are considered common or even “normal” in those with Down syndrome. This practice makes little sense. An under-functioning gland is an under-functioning gland regardless of other diagnoses and should be treated.
In January 2003, the America Association of Clinical Endocrinologists set suggested guidelines for doctors to consider treatment of patients who test outside the target TSH level of 0.3 to 3.0. [11] Patients who test outside the target TSH have sub-clinical hypothyroidism. In fact, 87% of children with Down syndrome have sub-clinical hypothyroidism [12]. Parents have seen positive results with doctors who treat their children with thyroid symptoms and sub-clinical hypothyroidism instead of waiting for the TSH to increase to an out-of-range level.
A 2016 study supports treatment when the TSH is below one since elevated circulating thyroid hormone levels do not cause hyperthyroidism [13].
Dr. Rind’s website [14] has an in-depth analysis of different thyroid parameters and how to interpret them. Here is a range of “normal” values posted on this website:
Test | Lab Low | Optimal Range | Lab High |
TSH* | 0.5 | 1.3-1.8* | 5.0 |
Free T4 | 0.8 | 1.2-1.3 | 1.8 |
Free T3 | 230 | 320-330 | 420 |
Free T3** | 2.3 | 3.2-3.3 | 4.2 |
* New studies support a TSH of below 1 as optimal, rather than low [15]. **Some labs divide FT3 results by 100 thus 230 is the same as 2.3, etc. |
Typically, hypothyroid shows low T4 and T3 (which is usually more elevated than T4). For a full analysis of all possible combinations of TSH/T4/T3, please refer to Dr. Rind’s Thyroid Scale Matrix [16].
What role does the thyroid play in the nervous system/brain function?
The thyroid influences the operation of the hippocampus, which is the part of the brain responsible for neurogenesis (the creation of neurons) and memory formation, organization, and storage. The thyroid hormone affects how a cell develops and matures into glial cells (cells that surround neurons, providing support and insulation between neurons) and also helps regulate the production of neural stem cells. After neuron injury, thyroxin adjusts the expression of the Nerve Growth Factor (BDNF) [17, 18]. In one study, hypothyroidism caused a 30% reduction in neuron generation in the hippocampus along with impairment in learning, short-term and long-term memory, and synaptic plasticity (the ability of neurons to change the strength and intensity of connections between them) [17].
A triiodothyronine (T3) deficiency can cause decreased growth of new blood vessels in the brain. T3 protects against neurotoxicity and supports nerve cell development [19].
Hypothyroidism can cause a decrease in the activity of GCL (an enzyme that is important for glutathione [GSH] production). GSH is among the most potent antioxidants in our body and is usually low in people with Down Syndrome, perhaps due to increased oxidative stress. In fact, administering thyroid hormone to astrocytes (the largest and most numerous neuroglial cells in the brain and spinal cord) caused a rapid increase in GSH levels [20]. These results make it abundantly clear that hypothyroidism could produce a cognitive delay in children with DS (and other conditions).
How should hypothyroidism be evaluated in infants?
Since there is a natural TSH surge soon after birth, neonatal screening tests for hypothyroidism may not accurately reflect thyroid function. So, careful monitoring of symptoms, such as body temperature, is needed instead. Clues such as feeding difficulties, slow movement, lack of interest, excessive sleepiness, and choking spells during nursing can also be early signs of hypothyroidism [21].
Respiratory problems due to an enlarged tongue, apnea episodes, noisy respiration, and nasal obstruction could point toward a hypothyroid state in older infants. Affected infants cry little, sleep more, have a poor appetite, and show general sluggishness. An umbilical hernia, low temperature, and slow pulse are also signs that should be taken seriously [22].
By six months of age, the clinical diagnosis of hypothyroidism could be easier to measure. But if not treated, older children may show severe delays from hypothyroidism and stand out in stark contrast to age-related peers with DS [22].
Parents can request a thyroid finger-prick test to make testing for all ages easier. Not all insurance will cover the cost of this test (approximately $56), but parents may choose to use self-pay.
What is the treatment for hypothyroidism?
The most common treatment is taking the synthetic version of the hormone thyroxine (T4). T4 converts to triiodothyronine (T3), the most bioactive or usable form in the blood. Some people may not respond well to T4 and may need a synthetic version of T3. Remember that it is best to wait 4 hours after thyroid medication before consuming anything that may interact with or inhibit the effects of the medicine, including soy products, high-fiber foods, iron and calcium supplements, and antacids that contain aluminum or magnesium [23].
Desiccated thyroid extracts (natural thyroid hormone supplements) made from the thyroid glands of mammals, usually pigs, are also available. Natural brands include Acella; Naturethroid; Westhroid; Thyroid-S; Thiroyd; Armour (if chewed, not swallowed [24]). [Note: In Australia, “thyroid extract” is found in compounding pharmacies; in Canada, Thyroid is a popular brand.]
Fluctuation in potency has been in question for natural hormones, but the FDA has also found that problem in synthetic thyroid medication [25]. Due to its source, natural thyroid has a much more varied spectrum of thyroid hormones available for the body, including T3. “Stop the Thyroid Madness” [26] reports anecdotal evidence: many patients report feeling better on natural thyroid medication over synthetic medication. One study showed that in most cases, the use of thyroid hormone resulted in significant improvement in chronic symptoms that had failed to respond to various conventional and alternative treatments. In some cases, the desiccated thyroid produced better results than levothyroxine [27].
How can diet and nutrition support the thyroid?
Along with treatment, adding these changes to your diet and lifestyle can be helpful. Some parents support their loved one's thyroid health with nutritional intervention in hopes of weaning them off thyroid medications. Although not common, some parents have seen the restoration of thyroid function with diet and nutrition alone.
- Iodine supplementation: Too much iodine can also cause hypothyroidism, so monitoring and taking it under a physician’s guidance is recommended.
- Selenium, Zinc, Iron, and Copper are all needed for healthy thyroid function. Supplementation with Zinc improves thyroid function [2]. Selenium, in particular, is needed to synthesize T3 in the body. Note that iron can interfere with the absorption of medication. Also, copper is usually high in the T21 population, so supplementation is not usually necessary; individual evaluation is warranted.
- Omega-3 fatty acids: evidence shows that these can help improve thyroid hormone action.
- L-Tyrosine is an amino acid the thyroid gland uses to synthesize hormones.
- Avoid soy products since it is widely considered goitrogen.
- Avoid or filter tap water. Fluoride and chloride are added to most public drinking water supplies. These halogens can replace iodine (also a halogen) in the body and potentially cause iodine deficiency.
Video on Down syndrome and Hypothyroidism
The research is not as up-to-date as this article, but this is an excellent overview and explanation: http://m.youtube.com/watch?v=6si37L76bdk
What are good thyroid forums to join?
http://forums.about.com/ab-thyroid
Where can I go for more information?
http://www.drrind.com/thyroid-scale
Any of the references below are good sources of thyroid-related information`
- Catherine C. Thompson and Gregory B. Potter. Thyroid Hormone Action in Neural Development. Oxford Journals Volume 10, Issue 10 Pp. 939-945
- Len Leshin MD: http://www.ds-health.com/ (6)Calcaterra V, Crivicich E, De Silvestri A, Amariti R, Clemente AM, Bassanese F, Regalbuto C, Vinci F, Albertini R, Larizza D. Timing, prevalence, and dynamics of thyroid disorders in children and adolescents affected with Down syndrome. J Pediatr Endocrinol Metab. 2020 Jul 28;33(7):885-891. doi: 10.1515/jpem-2020-0119. PMID: 32653879.
- Licastro, F., Mocchegiani, E., Zannotti, M., Arena, G., Masi, M. & Fabris, N. (1992). Zinc affects the metabolism of thyroid hormones in children with Down's syndrome: Normalization of thyroid stimulating hormone and of reversal triiodothyronine plasmic levels by dietary zinc supplementation. International Journal of Neuroscience, 65, 259-268.
- Dittfeld A, Gwizdek K, Michalski M, Wojnicz R. A possible link between the Epstein-Barr virus infection and autoimmune thyroid disorders. Cent Eur J Immunol. 2016;41(3):297-301. doi: 10.5114/ceji.2016.63130. Epub 2016 Oct 25. PMID: 27833448; PMCID: PMC5099387.
- AlAaraj N, Soliman AT, Itani M, Khalil A, De Sanctis V. Prevalence of thyroid dysfunctions in infants and children with Down Syndrome (DS) and the effect of thyroxine treatment on linear growth and weight gain in treated subjects versus DS subjects with normal thyroid function: a controlled study. Acta Biomed. 2019 Sep 23;90(8-S):36-42. doi: 10.23750/abm.v90i8-S.8503. PMID: 31544805; PMCID: PMC7233681.
- Calcaterra V, Crivicich E, De Silvestri A, Amariti R, Clemente AM, Bassanese F, Regalbuto C, Vinci F, Albertini R, Larizza D. Timing, prevalence, and dynamics of thyroid disorders in children and adolescents affected with Down syndrome. J Pediatr Endocrinol Metab. 2020 Jul 28;33(7):885-891. doi: 10.1515/jpem-2020-0119. PMID: 32653879.
- D. Michael, MD, Personal Communication
- Coleman M. Thyroid dysfunction in Down syndrome: A review. Down Syndrome Research and Practice. 1994;2(3);112-115. http://www.down-syndrome.org/reviews/40/
- Desouza LA, Ladiwala U, Daniel SM, Agashe S, Vaidya RA, Vaidya VA. Thyroid hormone regulates hippocampal neurogenesis in the adult rat brain. Mol Cell Neurosci. 2005 Jul;29(3):414-26.
- Stop the Thyroid Madness: http://www.stopthethyroidmadness.com/temperature/
- http://dsdaytoday.blogspot.com/2011/04/thyroid-ds-go-hand-in-hand.html
- http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
- Szeliga K, Antosz A, Skrzynska K, Kalina-Faska B, Januszek-Trzciakowska A, Gawlik A. Subclinical Hypothyroidism as the Most Common Thyroid Dysfunction Status in Children With Down's Syndrome. Front Endocrinol (Lausanne). 2022 Jan 4;12:782865. doi: 10.3389/fendo.2021.782865. PMID: 35058880; PMCID: PMC8764180.
- Kelly T, Denmark L, Lieberman DZ. Elevated levels of circulating thyroid hormone do not cause the medical sequelae of hyperthyroidism. Prog Neuropsychopharmacol Biol Psychiatry. 2016 Nov 3;71:1-6. doi: 10.1016/j.pnpbp.2016.06.001. Epub 2016 Jun 11. PMID: 27302764.
- http://www.drrind.com
- Thyroid hormone promotes glutathione synthesis in astrocytes by up regulation of glutamate cysteine ligase through differential stimulation of its catalytic and modulator subunit mRNAs. Free Radic Biol Med. 2007 Mar 1;42(5):617-26. Epub 2006 Dec 15.
- http://www.drrind.com/therapies/thyroid-scale-matrix
- Thyroid hormone regulates hippocampal brain neurogenesis in the adult rat Mol Cell Neurosci. 2005 Jul;29(3):414-26.
- Thyroxin regulates BDNF expression to promote survival of injured neurons. Mol Cell Neurosci. 2009 Dec;42(4):408-18. Epub 2009 Sep 16.
- Modulation of adult hippocampal neurogenesis by thyroid hormones: implications in depressive-like behavior. Mol Psychiatry. 2006 Apr;11(4):361-71.
- Stimulatory effects of thyroid hormone on brain angiogenesis in vivo and in vitro. J Cereb Blood Flow Metab. 2010 Feb;30(2):323-35. Epub 2009 Oct 28.
- Prasher VP. Down Syndrome and Thyroid Disorders: A Review. Down Syndrome Research and Practice. 1999;6(1);25-42. http://www.down-syndrome.org/reviews/95/
- Mayo Clinic: http://www.mayoclinic.com/health/hypothyroidism/DS00353/
- Stop the Thyroid Madness: http://www.stopthethyroidmadness.com/2010/04/25/how-to-make-reformulated-armour-and-naturethroid-work/
- http://www.thyroid-info.com/articles/synthroidproblems.htm Synthroid Has a Long History of Problems, Says FDA In Denying Synthroid's Request for Special Approval Status, FDA's Scathing Letter Outlines History of Subpotent Product, Inconsistency and Poor Stability by Mary Shomon
- Stop The Thyroid Madness: http://www.stopthethyroidmadness.com/armour-vs-other-brands/
- Gaby AR. Sub-laboratory hyperthyroidism and the empirical use of Armour thyroid. Altern. Med. Rev. 2004 Jun;9(2):157-79.
- Behrman, R.E., Vaughan, V.C. & Nelson, W.E. (1987). Disorders of thyroid gland. In R.E. Behrman, V.C. Vaughan, and W.E. Nelson (Eds.). Nelson Text Book of Pediatrics. 13th edition, London: W.B. Saunders Company.
- apnea - a pause in external breathing.
- bioactive - a substance that, in a chemical state, reacts with any cell tissue in the body.
- central nervous system - consisting of the brain and spinal cord.
- etiology - the cause of a disease or condition.
- glial cells - specialized cells that surround neurons, providing mechanical and physical support and electrical insulation between neurons.
- goitrogens - a substance that interferes with thyroid function.
- hippocampus - the part of the brain that is involved in memory forming, organizing and storing.
- metabolism- the process of breaking down food or other organic molecules in the body to create energy, and/or using energy to create different cell components.
- nervous system - a complex, sophisticated system that regulates and coordinates body activities. It is made up of two major divisions, including the following:
- neurogenesis - the process by which new nerve cells are generated.
- peripheral nervous system - consisting of all neural elements.
- sub-clinical hypothyroidism - patients who test outside the target TSH range