Archive for the ‘Help for your child’ Category

Can sleep affect your child with special needs? Or you?

Friday, April 21st, 2017

dad-and-daughter-asleep

Quick answer…YES. Sleep is more than, well, sleep. It is restorative and essential to a healthy life. It is as important as water, food and air. For a child with special needs, it can make the difference between an “okay day” and a horrible one.

What does sleep do for your child?

A study in Pediatrics revealed that “Children with non-regular bedtimes had more behavioral difficulties…Having regular bedtimes during early childhood is an important influence on children’s behavior.”

Non-regular bedtimes can disrupt your child’s behavior because it interferes with a body’s circadian rhythms (sleep cycle). It may also result in sleep deprivation, which may then negatively affect the part of the brain responsible for regulating behaviors. But, when children with non-regular bedtimes changed to regular bedtimes, parents reported positive changes in their behaviors. (Yay!)

Sleep also helps a person…

• get to and maintain a healthy weight

• stay healthy (you get sick less frequently)

• grow (if you are a baby, child or teen)

• lower your risk of high blood pressure and diabetes

• boost your mood

• think clearly, be more focused, and sharp

All of these benefits will allow your child to feel happier, do better at school, avoid injuries and be at his best – and that includes being better behaved.

For adults, the benefits are the same, making you more efficient at work, more energetic, less likely to make mistakes, and able to maintain a positive outlook. It also helps you to maintain patience – something needed when you are dealing with babies, children or teenagers, with or without special needs.

How much sleep do you really need?

• newborns need 16 -18 hours of sleep each day

• preschoolers need 11-12 hours per day

• school-aged kids need at least 10 hours

• teens need at least 9 hours of sleep each night

• adults need about 7-8 hours of sleep each night (some people need more, some less).

Note the words “at least,” as there are many kids who need much more sleep in order to function properly, depending on their lifestyle and medical condition.

What happens if you don’t get enough sleep?tired-family-in-car3

Children and teens need sleep to help their bodies grow. Cells regenerate at night during sleep. By not getting enough sleep, the hormone balance in a child will be thrown off. Without adequate sleep, a child’s immune system will have a harder time fighting off germs and diseases.

If you don’t get enough sleep, your “sleep debt” will increase to a point when you will need to make up for the lost sleep. If you do not get the sleep you need, your body won’t operate as it should. Your judgment and reaction times will be negatively affected. This can be dangerous for adults, especially if you are caring for an infant or child, or you are driving a car. Lack of sleep and driving is risky – it is as dangerous a combination as drinking alcohol and driving!

Where can you get more info?

For information on how to get a restful night’s sleep, sleep tips for children and adults, and when to see a doctor regarding possible sleep problems, see this handy guide.

If you are pregnant, you may have trouble finding a comfortable sleep position. Try sleeping on your left side with a pillow between your legs. Here are other tips.

Bottom line

Sleep is not a luxury; it is a necessity. By keeping a regular bedtime, your child’s health and behaviors may improve. Think of sleep as an essential nutrient (like a vitamin). Then, you may be able to make sleep one of the priorities in your life.

If you and your little one get the sleep you need, you will see and feel a positive difference.

Have questions? Text or email AskUs@marchofdimes.org

For additional information on parenting a child with special needs, see our series on Delays and Disabilities.

Developmental screenings are helpful for early diagnoses

Monday, April 10th, 2017

doctor-and-babyBefore your baby leaves the hospital, he receives a series of tests called newborn screening. These tests look for serious but rare conditions, including blood, hearing and heart disorders. If a problem is discovered through newborn screening, your baby may receive treatment and often avoid a more serious health problem. Early diagnosis is critical in detecting certain medical conditions.

Other screenings occur after your baby is home from the hospital

Between birth and age 3, your baby goes through incredible changes. He is growing and developing every day. To be sure that your baby is “on track,” your baby’s healthcare provider will check his developmental milestones at each well-baby visit.

These milestones are the major achievements in your child’s life. They include smiling, babbling, rolling over, sitting up, crawling, reaching grabbing, talking, walking and other accomplishments. Parents can check milestones, too. Here is a list of behaviors to look for at specific ages.

If either you or your baby’s provider are concerned that your baby is not progressing well, you can request a developmental screening. It is free as part of the federally funded early intervention program. Similar to newborn screening, this screening helps to identify potential health or developmental problems early.

If your child qualifies, the early intervention program may include services such as speech therapy, physical or occupational therapy, or even a special preschool setting. Early intervention can be enormously helpful in helping your child improve. And, the sooner you begin intervention, the sooner your baby can reach his full potential.

One example of a diagnosis where early intervention is particularly important is Autism. April is autism awareness month, a time to remember that this developmental disorder affects 1 in 68 children in the U.S. Officially called autism spectrum disorder or ASD, it is a developmental disability that can cause social, communication and behavior challenges – from mild to severe. This is why it is referred to as a “spectrum” disorder.

ASD can be difficult to diagnose because there is no medical test, like a blood test, to give a definite answer as to whether your child has it or not. Usually, children with ASD start showing signs or symptoms of the disorder in their toddler or preschool years, and some babies show signs in their first year of life. For this reason, taking your child for regular visits with his healthcare provider is particularly important so that his development can be monitored. If your child needs early intervention services, getting it early is key in helping him progress.

Bottom line

There is a wide range of “typical development” for children. But, if you are concerned about your child’s progress or feel he is delayed in reaching his milestones, talk to his healthcare provider sooner rather than later.

You can find more information in our series on Delays and Disabilities: How to get help for your child.

Remember – don’t delay with delays.

Have questions? Text or email AskUs@marchofdimes.org

Is the Zika virus affecting babies in the U.S.?

Friday, March 3rd, 2017

microcephalyShort answer…Yes.

The CDC just released a report that measured the number of brain related birth defects in the U.S. before and after the arrival of Zika. The study focused on data from three areas of the U.S. that track brain related birth defects – Massachusetts, North Carolina, and Atlanta, Georgia – in the year 2013-2014, before Zika arrived in the U.S.

It found that during that time, brain related birth defects occurred in 3 out of 1,000 births (.3%).

A study done looking at 2016 data shows that among women in the US with possible Zika virus infection, similar brain related birth defects were 20 times more common, affecting 60 of 1,000 pregnancies (6%).

This is a huge increase.

Here’s what we know

If a pregnant woman is infected with Zika, the virus can pass to her baby. Zika has been shown to cause a range of birth defects including brain problems, microcephaly, neural tube defects, eye defects and central nervous system problems. Although none of these birth defects are new to the medical field and they can occur for other reasons, it has been clearly established that the Zika virus can cause these serious problems, too.

Babies will require coordinated, long-term care

Babies born with Zika related birth defects will require access to coordinated medical care among a team of specialists. Such care may seem daunting to the parents and even to the medical community as they gather new information about the effects of the virus on a daily basis.

Enter the Zika Care Connect Network (ZCC)

This new website will launch in April 2017 to help parents and providers coordinate care for babies with complex medical needs due to Zika infection. The ZCC aims to improve access to medical care, which will jump-start early identification and intervention. The goal is to reduce the long-term effects of Zika on children and families by making it easier to locate a network of specialists knowledgeable about services for patients with Zika. The searchable database will feature a Provider Referral Network, patient resource tools, and a HelpLine.

Bottom line

Zika is still here, and it is seriously affecting babies and families. The best line of defense is to protect yourself from infection. Our website has detailed information on how to stay safe.

If you have questions, text or email AskUs@marchofdimes.org.

Why do we have World Birth Defects Day?

Wednesday, March 1st, 2017

wbddlogoIn a day and age when many cures exist for diseases and conditions, it may seem hard to believe that birth defects still occur. Yet, unfortunately they do.

Every year, millions of babies around the world are born with a serious birth defect. In many countries, birth defects are one of the leading causes of death in babies and young children. Babies who survive and live with these conditions are at an increased risk for long-term disabilities and other health problems.

What are birth defects?

Birth defects are health conditions that are present at birth. They may change the shape or function of one or more parts of the body. Birth defects can cause problems in overall health, how the body develops, or how the body works.

There are thousands of different birth defects. The most common are heart defects, cleft lip and palate, Down syndrome and spina bifida. Our website has a list of common birth defects as well as examples of rare birth defects.

We don’t know all the reasons why birth defects occur. Some may be caused by the genes you inherit from your parents. Others may be caused by environmental factors, such as exposure to harmful chemicals. Some may be due to a combination of genes and environment. In most cases, the causes are unknown.

Why #WorldBDDay?

The goal of World Birth Defects Day is to expand birth defects surveillance, prevention, care, and research worldwide. Naturally, the goal is to raise awareness, too.

You can help.

  • Lend your voice! Register with your social media account and Thunderclap will post a one-time message on March 3rd. The message will say “Birth defects affect 3-6% of infants worldwide. It’s a major cause of death/disability. Lend your voice!”
  • Join the Buzzday on Twitter, March 3, 2017 by using the hashtag #WorldBDDay.

With your help, we’ll raise awareness, which is the first step in improving the health of all babies.

What we’re doing

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality. Our research grantees have discovered genes that cause or contribute to a number of common birth defects, including fragile X syndrome, cleft lip and palate, and heart defects. These discoveries may one day lead to interventions so that some birth defects can be prevented.

The March of Dimes offers information about how to have a healthy pregnancy on our website and this blog.

We answer health questions from the public through AskUs@marchofdimes.org, and promote messaging on our Twitter handles, @modhealthtalk, @nacersano (in Spanish) and @marchofdimes.

We welcome your comments and questions.

Why reading aloud to your baby is so important

Thursday, February 16th, 2017

AA baby mom dad brother in NICU.jpg.resizedDid you know that reading to your baby helps promote language skills? Science has shown that reading to your baby helps build vocabulary, speech, and later reading comprehension, literacy and overall intelligence. Yet, less than half of children under the age of 5 are read to every day.

Reading aloud to your child is such an important aspect of language development that the American Academy of Pediatrics (AAP) offers guidance on how to read to your child, including book suggestions for every age.

But what if your baby is in the NICU?

Even if your baby is in the Newborn Intensive Care Unit (NICU), it is still incredibly valuable to read to him. The March of Dimes is partnering with Jack and Jill of America, Inc. to provide books to families who have a baby in a NICU. Parents are encouraged to choose books and read to their babies as often as they can.

In this resource, the AAP explains “Why it is never too early to read with your baby.” They say: “When parents talk, read, and sing with their babies and toddlers, connections are formed in their young brains. These connections build language, literacy, and social–emotional skills at an important time in a young child’s development. These activities strengthen the bond between parent and child.”

Why start reading today?

Today is World Read Aloud Day, a perfect time to start a new routine of reading to your child.

If you’re not sure what to read, you can ask your local librarian in the children’s room. You can also acquire books for a home library at second hand stores or even recycling stations. The “dump” in the town where I raised my kids has a book shed where you can drop off or pick up used books for free. And don’t forget, garage or yard sales are great places to get books for nickels. Having a mini-library at home has been shown to help children get off on the right academic foot.

But perhaps the best reason to read to your child is because it brings you together. The snuggles and cuddles, laughter and silliness that may result from reading a wonderful book, brings happiness to both parent and child.

Whether it is in the NICU or at home, reading aloud to your child is one of the most powerful things you will ever do. So grab a book, snuggle up, and enjoy!

 

Parent navigators – a lifeline for NICU moms and dads

Tuesday, January 17th, 2017

Preemie on oxygen.jpg resizedIf you’re the parent of a baby born prematurely, you know the stress and anxiety that is a part of having your baby in the Neonatal Intensive Care unit (NICU).  Even if the entire NICU staff is super supportive and answers your every question, you may still feel like you’re on an ocean in a life raft without oars or directions. The feeling can be overwhelmingly scary.

Then, once your baby is discharged from the NICU, you may begin a whole new journey of medical visits, specialists, therapies, and figuring out the complex world of health insurance. If your baby has special healthcare needs, these next steps may be confusing at best.

Enter Parent Navigation Programs. These are programs designed to assist parents of children with special healthcare needs. The hook is that parents are assisting parents. The parent navigators have been in their shoes, as they have children with special healthcare needs.

One of our NICU Family Support Partner hospitals, Children’s National Health System in Washington D.C., employs parent navigators to provide support to parents of children with complex medical conditions. They help the parents of newly diagnosed babies or young children navigate the complicated healthcare system to get the care their child needs and to access vital community resources. And, perhaps the best part is that these parent navigators provide the emotional support that only another parent of a special needs child can fully understand.

Children’s National started their Parent Navigator Program in 2008, and is now launching a new program aimed specifically towards parents of newborns in the NICU. These babies may be born prematurely (before 37 weeks of pregnancy), with complex medical conditions and/or with birth defects.

“This short-term, peer-to-peer “buddy” program looks to decrease stress, anxiety and depression in mothers of NICU babies during hospitalization” says Michelle Jiggetts, MD, MS, MBA, Program Administrator of the Complex Care Program and the Parent Navigator Program at Children’s National.

The success of this new program will be measured scientifically, by looking at the differences between parents who leave the NICU with a parent navigator, and those who do not. They will measure caregiver stress, anxiety and depression, as well as the amount of healthcare services a baby uses after leaving the NICU. The hope is that the group that had the benefit of a parent navigator for a year following their baby’s hospital discharge, will fare better overall – both parents and baby. You can learn more about this unique program, here.

According to Dr. Jiggetts, the parent navigator’s role is to:

  1. Provide peer-to-peer mentoring and support
  2. Link families to community resources and support groups
  3. Coach parents to be active partners and communicate effectively with health care providers
  4. Suggest useful tools (e.g. care notebooks) to help organize medical information
  5. Help families navigate the healthcare system and insurance issues
  6. Encourage families to focus on self-care

It seems like a no-brainer that a program like this will be incredibly helpful. As we all know, babies don’t come with instruction manuals, and infants with special healthcare needs have their own intense challenges. Having a peer “buddy” available to provide the low-down each step of the way must be a life-line that any parent would appreciate, but especially a parent of a preemie or baby with a health condition.

Even though you’re in a life raft on that ocean, you’ve now been given oars and a compass, and land is in sight.

 

Recognizing families who care for preemies

Wednesday, November 9th, 2016

Preemie on oxygen_smIn addition to November being Prematurity Awareness Month, it’s National Family Caregivers Month. These two themes go together well. Caring for a premature baby can take a huge toll on parents and families. The focus is on the baby (naturally) which can be a round-the-clock roller coaster ride. But, who cares for the parents and other children?

Recently I attended a meeting for parents of special needs children. The common theme that day was coping. Parent after parent talked about the impact that one child can have on an entire family. When medical issues are present, as they are with a preemie, it is understood that everything else stops while you care for and make serious decisions related to your baby. If you have other children, they take a temporary back seat to your sick baby. Everyone pitches in to do what they must do to survive the crisis of a NICU stay.

Once the baby is home, the crisis may seem like it is over, but often it is only the start of a new journey – one with visits to more specialists than you knew existed, appointments for speech, physical,  occupational and/or respiratory therapy, a schedule of home exercises, and navigating the early intervention system. Thankfully, these interventions exist to help your baby, but it is clear that this new schedule can resemble a second full-time job.

If a parent is alone in this process (without a partner), it can be all the more daunting. Without a second set of eyes to read insurance forms, or a second set of hands to change a diaper when you are desperate for a shower, it can feel overwhelming.

What can you do?

This month is a good time to remember to reach out and ask for help. Friends often want to take a bit of the burden off of you, but simply don’t know how they can be helpful. Be specific with them. If you need grocery shopping done, send out a group text to your buddies and ask if anyone could swing by the grocery store to pick up a few items for you.

Try to set aside a couple of hours each week, on a regular basis, when you know you will have a respite. It could mean that your spouse takes care of the baby while you go take a walk or join a friend for coffee. Or, your parent or grandparent could take over for a bit so you and your spouse could watch a movie together. It doesn’t have to be a lot of time – but just knowing it is scheduled gives you something tangible to look forward to, which helps to keep you going and lift your spirits.

In other blog posts, I share ways parents can take the stress off. See this post for a list of survival tips, and this post for how to care for the brothers and sisters of your special needs child. They need special TLC!

Be sure to check out the Caregivers Action Network’s helpful tips for families as well as their useful caregiver toolkit.

If you are like me and have trouble relaxing, see “Stop. Rest. Relax…Repeat.” It may just inspire you to break the go-go-go-all-the-time pace and find ways to relax. Believe me – once you grab those precious moments to refuel, you will be glad you did. Your body and mind will thank you, and so will your family.

Do you have tips for coping? Please share.

View other posts in our Delays and Disabilities series, and send your questions to AskUs@marchofdimes.org.

 

 

Respiratory Therapists help babies and families breathe easier

Wednesday, October 26th, 2016

help-breathingIf your baby is in the neonatal intensive care unit (NICU), it can be nerve wracking to see him hooked up to machines, especially if he is having difficulty breathing. This is when a respiratory therapist (RT) can help.

“If a baby needs respiratory support, parents should not be afraid. We give them only what they need” says Ana Anthony, a respiratory therapist at Children’s National Health System in Washington, D.C., one of the finest children’s hospitals in the nation.  Ana notes that “Every day may be a different challenge. The babies will go through ups and downs – the body is very complex. Our goal is to have the baby breathe on his own.”

It’s Respiratory Care Week, a time to recognize the respiratory care profession and to raise awareness for improving lung health. According to the American Association for Respiratory Care, “Respiratory therapists provide the hands-on care that helps people recover from a wide range of medical conditions.”

Respiratory therapists work in a variety of settings including a hospital NICU. Babies born too early run the risk of having breathing problems because their lungs may not be fully developed. Other babies might have breathing issues because of an infection or birth defect.

Due to numerous medical breakthroughs, more and more babies who need treatment for breathing problems or disorders benefit from respiratory therapy. In fact, neonatal respiratory therapy has become its own medical sub-specialty. A neonatal-pediatric RT is trained to use complex medical equipment to care for the smallest babies with mild to severe breathing challenges. They visit their patients daily, as often as needed.

You may have been introduced to your baby’s respiratory therapist if you have a baby in the NICU. A respiratory therapist would have evaluated your baby’s breathing soon after your baby arrived. The RT looks to see if your baby is breathing too fast, if the breaths are shallow, or if your baby is struggling to breathe. Then, together with the NICU healthcare team of doctors, nurses and other specialists, the RT develops a care plan to help your baby.

Respiratory therapists are rigorously trained, first earning a college degree and then specific certifications. For example, Ana holds several credentials: a BSRC (bachelor’s degree in respiratory care), RRT-NPS, (registered respiratory therapist with a neonatal pediatrics specialty), AEC (asthma education certification) and ECMO (extra corporeal membrane oxygenation). If these titles sound impressive, it’s because they are! RTs are put through intense education and hands-on training and stay current with breakthroughs or changes in the field by obtaining different certifications.

Ana Anthony speaks for all RTs when she says “We love what we do and strive to have the best outcome possible for all our patients.”

 

You can learn more about respiratory issues that preemies may face, in our article. Did your baby receive care from a respiratory therapist? Tell us about your experience.

Have questions? Text or email AskUs@marchofdimes.org.

Note:  This post is part of the series “Delays and Disabilities: How to get help for your child.

 

Here’s a tool to monitor your child’s physical development

Wednesday, July 20th, 2016

Baby with rubber duckyFrom sitting to crawling to standing, there is a wide range that is considered typical development for children at a given age. Parents often see other babies or children engaging in activities that seem advanced for their child of the same age, especially if their baby was born prematurely. Time to worry?

The American Academy of Pediatrics has an easy tool to help parents know what to do if they are wondering about their child’s physical development. This interactive tool will help you see if you should be concerned at any point, and if so, what to do about it.

Simply choose the activity you are worried about (holding his head up, rolling over, bringing things to his mouth, grabbing or holding toys, sitting up, standing up, walking, going up or down stairs, running) and it will take you to a page where you can see your child’s age and learn what is typical. It also tells you what to can do at that point.  For example, if you are concerned that your two month old can’t hold his head up, it advises “Before your next visit (with your provider), make sure your child is getting “tummy time” a few times a day when she’s awake and playful.”  It will also tell you when you should make an appointment with your child’s provider. Check it out!

Of course, a chat with your child’s health care provider is always suggested and could relieve you of lots of undue worry. But this tool is a real help when you are concerned and want a quick answer, even before you can make the appointment.

Parents, you know your child best. Here are a few tips on how to start the conversation with your child’s healthcare provider as well info on developmental milestones.

Have questions? Our health education specialists are here to answer them. Text or email AskUs@marchofdimes.org.

 

The Zika virus may stop brain development causing microcephaly and birth defects

Wednesday, June 22nd, 2016

mosquito_3DWhen a woman is pregnant and is infected with the Zika virus, it may cross the placenta and may stop the development of a baby’s brain. Zika infection during pregnancy causes a birth defect called microcephaly as well as other brain problems known as “fetal brain disruption sequence.”

Microcephaly means small (micro) head (cephaly) – a baby’s head is smaller than the heads of babies of the same age and sex. Microcephaly does not always cause serious problems for a baby. But in certain cases, microcephaly can cause lasting consequences, such as intellectual and developmental disabilities. Babies born with microcephaly may have cerebral palsy, poor growth, face deformities, feeding problems, seizures, problems with hearing or vision, and hyperactivity. They may face life-threatening medical conditions. Microcephaly caused by the Zika virus may be severe and is extremely concerning.

There is no cure for microcephaly. Babies with microcephaly will need regular medical check-ups and follow up care. Many will need specialized treatment by doctors such as a neurologist, developmental and behavioral pediatrician, and rehabilitation specialists. Early intervention services for babies and toddlers as well as special education services for children ages 3 and older, may be essential in helping a child develop.

Fetal brain disruption sequence refers to the halting of the development of a baby’s brain as a result of being exposed to the Zika virus. This stop in development can result in a wide variety of health problems for the baby, which can be lifelong.

The Zika virus may also be linked to growth problems in the womb, miscarriage and stillbirth.

Vaccine progress

Currently, there are no FDA-approved vaccines to prevent Zika. But, the FDA (The US Food and Drug Administration) has approved the first Zika vaccine study in human volunteers, ahead of schedule. Clinical trials should begin in the next few weeks. Although this is great news, it could take years before a safe vaccine is available to the public.

How can you stay safe?

The Zika virus is real and dangerous. Until a vaccine is available, learn all you can about how to stay safe.

The March of Dimes maintains up-to-the-minute information and materials for women and families on our website and social media. All of our information is drawn from the Centers for Disease Control & Prevention (CDC) and other trusted sources, and available in both English and Spanish. Learn more at:

marchofdimes.org/zika
nacersano.org/zika

Check out our Twitter handle @modhealthtalk for the latest Zika news and Twitter chats.

You can help us spread the word about the Zika virus by passing along our bilingual factsheet which tells you how to protect yourself and others from Zika.

Have questions? Send them to AskUs@marchofdimes.org.