Doctoring our Babies
A Few Finds
And now for some treasures we’ve discovered along the way. This is the here and now, the hands-on, the doing good things for your baby part.
To begin, it helps to remember that because the cells throughout your baby’s body have an extra chromosome in each one, quite a few things are affected. From head to toe, and from inside to outside, differences exist. From the gentle upward slope of your baby’s eyes to muscle tone to his learning ability (notice I didn’t say inability, because that’s simply not the case, our children have great ability). Knowing there is a difference is important, knowing we can help our children regarding those differences is even more important. So what can you as a parent do? First, believe in yourself and believe in your baby. You’ve got what it takes, your baby has what it takes. And then with that belief, that foundation, you can make good things happen.
Making Good Things Happen Right Away
Right away, as soon as your baby is in your arms, you can start making good things happen for him. How? Love him, rock him, talk to him, smile, sing. These seem like obvious things to do with a brand new baby, and they are! But, for your baby with Down syndrome, these "obvious" things are also very therapeutic, they actually are doing him a world of good. Some other things that do good for your baby:
• hanging a very colorful mobile over his crib
• putting brightly colored and patterned sheets on his crib (the primary colors
– red, blue, and yellow are great for visual stimulation)
• playing music on an instrument if you know how
• playing music on CD’s, radio, etc.
• holding your baby in your arms and dancing around with him as you play music
• TV is also recommended (in reasonable doses) because of the human speech,
movement, colors, and music involved - PBS children’s programs, Sesame Street,
Barney, Teletubbies, Dora the Explorer offer these stimulating ingredients
• rocking your baby in your arms is a good thing, and a rocking sort of baby
swing is good too, both stimulate a sense of balance and are soothing
• always talking to your baby, telling him what you’re doing, and when he makes
little sounds, imitating his sounds, encouraging him to make sounds
• placing your baby in safe places in different rooms in the house so he is
stimulated by the change of environment (put him on his tummy so he can explore)
• reading brightly colored books to him
• letting brothers, sisters, grandmas, grandpas, aunts, uncles, cousins smile
and hold and play with and love your baby (it’s good "therapy" for everybody!!)
Making good things happen for your baby can begin right after his birth. And healthy eating, good nutrition for your baby can also begin immediately. Good nutrition is so important for all babies, including those with Down syndrome. Starting them out with good nutrition is very good and continuing with it is, as we’ve found, critical. Proper nourishment, good nutrition for a Down syndrome baby is, literally and figuratively speaking, food for thought. Here’s why.
Scientists have found that that extra 21st chromosome causes a metabolic imbalance. They’ve found that those with Down syndrome may have depletions of antioxidants, amino acids, digestive enzymes, and many other essential nutrients in their systems. These depletions can cause differences in metabolism, growth, general health, and development patterns. But here’s good news! You can help your baby right from the start.
A therapy exists which is specifically designed to help the metabolism of those with Down syndrome. It helps balance the metabolic differences; it assists in the absorption of vital nutrients in food and helps strengthen a repressed immune system. It can also improve growth and muscle tone, increase alertness, and decrease the incidence of infections (like ear infections). If your baby feels good, if he’s healthy, not frequently sick, he can focus more on being a regular, healthy baby. "When you’ve got your health, you’ve got just about everything!" we always hear. And it’s true!
The therapy, also known as targeted nutritional intervention, is a vitamin/mineral/amino acid/enzyme formula designed specifically to address the metabolic differences associated with Down syndrome. All the ingredients of targeted nutritional intervention are safe and you simply add it to your baby’s bottle and later to his food. Nursing Moms can also easily incorporate it into their expressed milk in a bottle.
In our experience, targeted nutritional intervention has proven to be a great help in keeping our children healthy. It is not a "cure" for Down syndrome, it does, though, appear to improve overall health. A type of "nutritional therapy" for Down syndrome was developed in the 1930’s based on the work done by Dr. Henry Turkel. Dr. Turkel diagnosed DS as a metabolic disorder and had considerable success in treating it with antioxidants, enzymes, and other nutrients. Since that time, more research, more testing, more refinement has gone on which has transformed "nutritional therapy" into "targeted nutritional intervention," the replenishing of the specifically depleted nutrients in the individual with Down syndrome. This nutritional intervention is made especially for those with Down syndrome.
Physical Therapy for our Babies
As we’ve learned first-hand, getting our special babies nourished properly is a very positive step in their development. Without proper nutrition, good health will most certainly be harder to come by. And we’ve found that with proper nutrition, our babies pay more attention to doing baby things and so develop at a faster pace. And the earlier proper nutrition is introduced, the better. We’ve found the same to be true of physical therapy, the earlier the better. And just as nutritional intervention is more effective when it is targeted specifically for our Down syndrome children, so is physical therapy. The more experience and training the physical therapist has with babies and children with Down syndrome, the better.
Physical therapy can help improve "gross motor skills." Gross motor skills include head control, rolling over, sitting up, creeping, crawling, pulling up, standing, walking, etc. And we want you to know that physical therapy is something even the youngest of Down syndrome babies can benefit from. Many of the physical differences, such as low muscle tone (hypotonia), a characteristic frequently found in our babies, can be addressed by a physical therapist early on.
Physical therapy can improve the very foundation of physical and mental development. Because gross motor skills tend to develop more slowly in our children, early intervention with physical therapy can, indeed, help.
The physical therapist works with your baby during scheduled sessions, doing exercises and activities as you look on. (Some therapists even provide services right in your home. They come to you!! Ask about that.) Through appropriate exercises and activities, a Downs baby’s low muscle tone, for instance, can be addressed by strengthening muscle. And beyond that, babies and children under the guidance of a good physical therapist have demonstrated improved coordination and balance which, in turn, can assist in the fundamental development of the brain.
So much has been researched, learned, and written about the brain as of late - this is particularly interesting and encouraging to us, parents of young babies with Down syndrome. The research says that even early on, the brain is developing as it builds on previous and current experience. And so when a physical therapist works with your baby during the regular sessions and you carry on with that work between sessions, you and the therapist will have provided "experiences" for your baby to build on and move forward from. Stimulating, fun activities and exercises designed especially for your Down syndrome baby will go far in improving his motor skills and even his ability to learn.
A very important suggestion, take an active role in assisting the therapist, from providing her with information on what your baby is doing at home to listening carefully to what she says and watching what she does to following through with what you’ve seen and heard during the session. Always remember, even though you are working with a professional in the field, you know your baby better than anyone else. Don’t be shy -- ask plenty of questions.
Make sure the physical therapy includes exercises and activities that are both practical and can fit into your family’s routine. And be sure you can work on these things with your baby at home. That part can be really fun and rewarding, working (playing!) with your baby and watching those smiles and milestones come.
Occupational Therapy for our Babies
As with nutritional therapy and physical therapy, occupational therapy is also readily available and helpful in addressing our children’s needs. Occupational therapy is available to address things that typically occupy a baby’s time, his daily living skills. For instance, when a baby is a little older, the occupational therapist may provide help in getting your baby to make the transition from bottle to cup. Or, from being spoon fed to self-feeding. Or, later on, from Mommy-assisted putting clothes on to independent dressing.
Occupational therapy (OT) is very beneficial, but it’s our experience that OT can be started a little bit later on. Proper nutrition and gross motor skills should and can be addressed almost immediately, while OT can wait a little.
The occupational therapist focuses on daily living activities such as feeding, dressing, washing, and holding objects. Proper positioning of a baby’s shoulders, arms, and hands while engaged in playful activities is important to paving the way for the next milestone. Improved "fine motor coordination" helps a child help himself. Reaching for the bottle, grabbing for a pacifier, or splashing in the tub are good things and building blocks for future developmental milestones.
Cognitive Development for our Babies
A friend of ours once described the brain, everyone’s brain - adults, children, babies - as a type of container, a sort of ‘magic’ container because the more that’s put in it, the more it can hold. So with that in mind, it’s wonderful to know that the more we work/play with our babies, the more we’re "putting in," and the more we put in, the more we enhance our children’s cognitive development.
Being a little more scientific about it, the ability of the brain, any brain, to function and learn efficiently is determined by the number of neural (brain cell) connections it has. Neurons grow most rapidly during those first few years of life. Stimulation causes neurons to grow. A larger network of neurons allows the brain to work more efficiently.
So stimulating and engaging all your baby’s senses – seeing, hearing, smelling, touching, tasting - is a good thing. And as you go along, remember to focus on that input rather than output. Testing, which focuses on "output," measures what has already been learned, but rarely does it measure or increase one’s ability to learn.
In addition to giving your baby lots of opportunities to experience the stimulating world he lives in and thus help him in his cognitive development, there is available a cognitive enhancing formula known as Piracetam which may also help. Scientific studies have shown that certain areas of the brain of individuals with Down syndrome don’t "connect" properly, that the two hemispheres of the brain don’t communicate effectively with one another. This ineffective communication can mean difficulties in memory, in focusing on a given task, in speech, and in learning to read. It has been shown that Piracetam aids in conveying messages along the neural pathways in the brain, from one hemisphere to the next.
School for babies? Is there such a thing? Yes. Is it a good idea? Absolutely!
Even the federal government thinks it’s a good idea. As a matter of fact, within the guidelines established in the Federal Individuals with Disabilities Act (IDEA) of 1997, all children - from infancy to adulthood - with a disability, this includes our children with Down syndrome, are "guaranteed a free, appropriate public education provided in the least restrictive, age appropriate environment." Federal law mandates this for all children with disabilities.
And seeing as how the education must be "appropriate," your baby can go to "school" or the "school" can come to him with "appropriate" teachers, such as physical therapists, occupational therapists, speech therapists, and hearing specialists addressing his needs. The federal government is required to provide appropriate education to our babies with Down syndrome.
The education programs for the youngest special needs students are known by different names, depending on where you live. In some states it’s called the Early On program, in others it’s Early Intervention Services, for still others it may be the Infant/Preschool Special Education Program. Although the names of the programs may be different, the federal law guarantees that such a program is available to your child.
All the programs, no matter which state you live in, include some formal evaluating/testing of your child and then, with your input, a plan of action. This is known as an IEP, the Individualized Education Plan. And you, as parents of your newborn, are an important part of the plan making. You have input. Who, after all, knows your baby better than you do? So be involved with this process as much as you can, ask questions, voice concerns, don’t be shy!
Early education (early services of physical therapists, occupational therapists, etc.) is, by law, available to your little one. Many who have used these services see not only progress for their children, but discover a network of other parents who have helpful hints, ideas, and good, old-fashioned listening ears.
During those first few hours and days after giving birth to a baby (Downs or not), you’re introduced to about a million different people wearing white coats and name badges. Some are your baby’s nurses, some are your nurses, some are your baby’s doctors, some are your doctors, some are the ones bringing your food, some are interns, some are taking your baby’s first picture, some are anybody’s guess. It’s a whirlwind of introductions no matter the time of day or night. And privacy is tucked in the closet with your street clothes. And that’s with any baby, with any birth.
When your baby has Down syndrome, the doctors, nurses, and all the others will be introducing themselves and invading your room just as normal. The doctors and nurses will, however, have extra information and recommendations for you. Early detection of certain problems that can go along with having Down syndrome is important. Early detection of any gastrointestinal abnormalities is critical so that eating and digestive problems can be corrected. And early detection of heart anomalies is also critical. Usually within a week after birth the newborn with Down syndrome will be seen by a pediatric cardiologist to see how his heart is doing. If there is a heart problem, it can be corrected with relative ease given the technology and expertise available in most U.S. hospitals today.
Your baby will be seen by the pediatrician you’ve chosen for his regular well-baby visits. As with all babies, the pediatrician will weigh, measure, immunize and give your baby the general care all babies get. There is a separate growth chart for babies with Down syndrome that your pediatrician will probably use to plot your baby’s growth on. (Down syndrome babies typically are a bit shorter and lighter than other babies.)
Always feel free to ask questions, ask about physical therapists, ask about "school"/early intervention programs, ask about nutrition, ask about all those things. In addition, if you find answers and information on your own in books, online, or from support groups, bring your new-found knowledge to the doctor’s office when you bring your baby in. We need to remember that the doctors, nurses, and we, as parents, are all valuable resources to one another. We can help each other out as we help our children. We can all help our little ones be and stay healthy. And as we’ve said before, "When you’ve got your health, you’ve got just about everything."
Scientific studies and research projects are underway that when completed will impact, very positively, your brand new baby. It’s an exciting time in the scientific world regarding the research into human genetics, neurology, biochemistry, and nutrition. And the research happens to be probing deep into the mysteries of Down syndrome. From one coast to the other, researchers are on a mission to help.
• Dr. Lawrence Leichtman, M.D., FAAP, FACMG, at the Genetics and Disabilities Diagnostic Care Center in Virginia Beach, Virginia, is leading a research team who is studying the effects of nutritional supplementation on:
Growth
Development
Muscle tone and levels of alertness
Illness and side-effects
Blood levels
• Dr. Tony Wyss-Coray, Assistant Professor of Neurology at Stanford University and a Health Research Scientist at the Palo Alto VA Health Care System, is conducting research which will lead to the identification of therapeutic targets for not only those with Down syndrome, but those suffering from Alzheimer’s disease as well.
• Dr. Craig C. Garner, Co-director of the Center for Research and Treatment of Down Syndrome at Stanford University, heads a group of scientists and clinicians dedicated to unraveling the mysteries of trisomy 21. Specifically, the group is working to find ways to improve the ability to learn and remember for those with Down syndrome.
These projects are underway and progress is being made. However, it will take awhile, scientific studies always seem to "take awhile." Responsible for this "take awhile" business of these projects is just the nature of the study process (the time required to get results) plus the time waiting for funds to come in which support and pay for the research. Many groups are working hard towards raising the needed money for this research, including the UpSide of Downs. We’re very proud and excited to be a part of it all!
There is a lot of "upside" out there making the horizon very bright for our children
