Talking to your child about his medical condition

Parents have written to us asking when they should tell their child that he has a disability, birth defect or chronic medical condition. Not only do they want to know when to tell their child; they want to know HOW to do it.

According to the experts, there is no straight, cookie-cutter answer. Every child is different. Every medical condition is different. Kids mature at varying rates, so one five year old may be capable of understanding details of his condition while another one will not be able to grasp the concepts. According to the AAP, “The type of information you convey to your child should be appropriate for your child’s age and developmental abilities. You can gauge this best by listening to her questions.”

Seeking advice from your child’s pediatric health care provider is always a good place to start, along with other specialists such as a therapist, psychologist, neurologist or developmental pediatrician. The AAP has practical information on how to talk to your child, along with tips on how to help him deal with the daily stress of a childhood disorder.

Just as you probably felt like a steam roller moved over you when you learned of your child’s condition, your child may also feel disappointed, sad or even angry. On the other hand, your child may feel a sense of relief to realize that the condition has a name, he is not the only child who has it, and mom and dad will be there to support him through the ups and downs. Other children may not have much of a reaction, as they already knew what was going on – or felt different – so they are not especially moved by the new information.

Depending on your child’s age, his ability to understand, and what he hears from peers and siblings, he may know more about his condition than you think. And, each year, as he grows and matures, his ability to understand will increase. AAP recommends that “Every year or so, someone should check out what the child understands about his illness or disability, fill in the gaps and correct information that he does not understand correctly.”

Children’s books on the topic of his disability can help your child understand what is happening in his world. Likewise, meeting other children who share his condition may help to put it in perspective and brighten his outlook. He may even make a new friend or two.

Remember to focus on what your child CAN do, as opposed to his struggles. This attitude is key in keeping him focused on the positive. Help him find his passion  and celebrate his resilience.

If you have questions, send them to AskUs@machofdimes.org.

View other posts in the series on Delays and Disabilities: How to get help for your child.

Rotavirus vaccine drastically reduces childhood hospitalizations

A colleague was recently telling us about the time her 18 month old daughter was hospitalized for two days due to severe dehydration. She had been experiencing diarrhea and vomiting for a few days and it unfortunately progressed to the point where she needed medical intervention. Her illness was caused by rotavirus. Fortunately since 2006 a vaccine has been available that prevents rotavirus and new research shows how effective the vaccine has been at reducing hospitalizations.

According to the American Academy of Pediatrics, every year prior to the rotavirus vaccine being available:
• More than 400,000 young children had to see a doctor for illness caused by rotavirus,
• More than 200,000 had to go to the emergency room,
• 55,000 to 70,000 had to be hospitalized, and
• 20 to 60 died.

A study that was recently published shows that since the vaccine has been available, there has been a significant drop in the number of young children hospitalized with diarrhea, vomiting, and dehydration. After vaccination began, hospitalization rates for rotavirus fell by 70 percent in 2008, 63 percent in 2009, 90 percent in 2010 and 94 percent in 2012.

While the vaccine protects individual children from getting rotavirus, herd immunity also plays an important role. According to the study’s researchers, “Herd immunity occurs when a child’s chance of coming into contact with a germ drops because so many other people are also immune to the bug, and are therefore not passing it on.” Since infants are routinely vaccinated against rotavirus, the virus is no longer as common as it once was. As a result, children who cannot be vaccinated because of allergies or underlying medical conditions are protected from getting the virus as well.

The rotavirus vaccine is given in either two or three doses at 2, 4, and 6 months (if necessary) of age. Your baby should get the first dose of rotavirus vaccine before 15 weeks of age, and the last by age 8 months. Although the vaccine prevents diarrhea associated with rotavirus, it will not prevent diarrhea or vomiting caused by other germs. So proper hand-washing is still important.

Questions?  Send them to AskUs@marchofdimes.org.

Tags: herd immunity, rotavirus, vaccination schedule, vaccines

Caring for your sick baby

Recently, one of our health education specialists received an email from a new mom asking what she should do for her four month old daughter who was crying, not feeding and seemed hot to the touch.

The Pregnancy and Newborn Health Education Center has been answering questions from the public for nearly two decades. We provide scientifically based responses to questions on pregnancy (including preconception, complications and postpartum care), prematurity, birth defects, infant and young child care, delays and disabilities, and other health related topics.

In the case of this new mom, the health education specialist recommended that the mom take her baby to see her health care provider. Babies can get sick very quickly, and the only one who can make the judgment as to what is going on, is a medical professional who examines the baby.

But, often a mom needs information about a condition, and that is where our website can be an enormous help.

 Well and sick baby care is on our website

We provide tons of info on what to do if you suspect that your baby or child is not well. You will

• learn how to care for your baby when he has a cold, the flu, a rash or a fever.
• learn the signs of a seizure or breathing trouble, that means your baby needs 911 emergency care.
• know when it’s time to call your baby’s health care provider for help.

Here’s a sampling of other topics that you’ll find on our website:

Croup
Ear infections
Cytomegalovirus
Neonatal Abstinence Syndrome
Roseola
Reflux
Thrush
Teething

There are many more conditions -take a moment to look through and familiarize yourself with our website. It is rich with information.

Birth defects and special needs

You can also find information on various birth defects and disabilities, from autism spectrum disorder to thalassemia. You can learn how to get services for your baby after the NICU, too. Once you review the information, if you are not sure about how to care for your child, or would like more information about a particular health condition, send an email to AskUs@marchofdimes.org. We will be happy to provide an answer to your question within two business days.

If you are unsure, or it is a problem that cannot wait, always contact your health care provider or take your child to the nearest emergency room.

For other posts on how to help your child with a delay or disability, view our Table of Contents.

 

Tags: croup, delays, disabilities, ear infections, emergency care, fever, NAS, reflux, sick baby, sick care, Special needs, teething, thrush, well care

Birth announcements for your preemie

The birth of your baby is such an important and joyous time in your life. Many moms want to commemorate the birth by sending out birth announcements to friends and family. I remember when my nephew was born, my sister-in-law put together a small photo shoot in her living room in order to have the perfect picture to include on the birth announcement. Many parents, however, don’t anticipate giving birth early and having a baby in the NICU. If your baby was born weeks or even months ahead of schedule, how should you announce your baby’s birth?

As your baby is being cared for in the NICU, you may feel like you are riding an emotional rollercoaster. You don’t have to send out birth announcements right away. Your first priority is taking care of your baby (and yourself). Birth announcements are typically mailed out anywhere from a few days to a few months after the arrival of your little one, so wait until your baby’s health stabilizes and you feel ready to focus on it.

What if your baby was born weighing 3 pounds, or less – should you include the weight on the announcement?

This is totally up to you. If you feel uncomfortable sharing that information on a birth announcement, you don’t need to include it. Many parents of full-term babies often leave their baby’s weight off the announcement. You can include your baby’s name and date of arrival, which are the details family and friends really want to know.

Your baby’s birth may not have gone as planned, but as your rollercoaster ride starts to slow, you will want to give your child the welcome celebration that she deserves.

Tags: birth announcements, preemie, premature birth, prematurity

Vaccine during pregnancy protects your baby after birth

Today we welcome guest blogger Melissa Gambatese, MPH, Research Analyst in the Perinatal Data Center here at the March of Dimes. She offers an update on how a vaccine during pregnancy can keep your baby healthy when she is born.

When a new baby is born, we are so careful to protect her in every way. We wash our hands before holding her, tip toe past her room so as not to wake her, and swaddle her to keep her warm from the cold. However, one protection we may not think of is as simple and quick as a vaccination before she is even born.

Vaccines help protect us from diseases throughout life, from infancy to adulthood. But did you know that mothers can pass on the protection from some vaccines to their new baby before birth? The Tdap vaccine is one of them.

What is the Tdap vaccine?

The Tdap vaccine protects you from three diseases called tetanus, diphtheria, and pertussis. Tetanus is caused by bacteria that attacks the nervous system. You can get tetanus through a break in your skin, like a cut or a splinter, but not from another person. Pertussis, also known as whooping cough, and diphtheria are highly contagious diseases caused by bacteria that are spread through coughing and sneezing.

Babies who get whooping cough can become very sick, and in rare cases, may die. The number of cases of whooping cough has been increasing since the 1980s. In 2012, more than 48,000 cases were reported. There is currently an outbreak in Washington state. Vaccination is the best way to protect yourself and your new baby from getting the disease.

Who should get the Tdap vaccine?

Pregnant women

If you’re pregnant, you should get vaccinated during the 3rd trimester of your pregnancy. Get the vaccine every time you are pregnant, even if you’ve been vaccinated before. The protection from a previous vaccine can wear off over time, and a blood test cannot determine if you are still protected from a vaccine received earlier in your life.

Recently, the CDC published that, in 2011, only 55.7% of women in 16 states reported they received the Tdap vaccine before, during, or after their most recent pregnancy. Women who started prenatal care earlier were more likely to report they received the vaccine.

The Tdap vaccine is safe to receive during pregnancy; a recent study found that women who received the vaccine during pregnancy did not experience any increase in poor pregnancy outcomes than unvaccinated women. Talk to your health care provider-the best time to get the vaccine is during the 27th through 36th week of pregnancy. This ensures that you pass your protection on to your baby, which will help keep her safe until she is able to get her own pertussis vaccination at 2 months of age.

Brand new moms

If you did not get the Tdap vaccine during pregnancy, you should get the vaccine immediately after you give birth, before you leave the hospital or birthing center. It will take your body two weeks after receiving the vaccine to build up protection. You will then be less likely to pass whooping cough to your baby. New moms should get vaccinated even if you’ve been vaccinated before, because the protection from a previous vaccine wears off over time.

Relatives, close friends, and caregivers

Anyone who is around babies should get the Tdap vaccine, especially adults living in the same household as your baby. This includes grandparents, siblings, and other caregivers.

Whether you’re pregnant, a new mom, relative, close friend, or caregiver to a baby, talk to your health care provider about the Tdap vaccine. It’s just one more way we can protect our babies.

 

Tags: diptheria, pertussis, protection, Tdap, tetanus, vaccine

Preemies and asthma – how to help your child

Research has shown that premature birth (before 37 weeks) can cause a baby to have lung and breathing problems such as asthma, a health condition that affects the airways.

Asthma causes repeated episodes of wheezing, breathlessness, chest tightness, and nighttime or early morning coughing. It can be mild to severe. If your child has asthma, he is far from alone. According to the CDC, 6.8 million children have asthma, or 1 in 11 children.

Asthma can be controlled by taking medicine and avoiding the triggers that can cause a flare-up. It is important to remove the triggers in your child’s environment that can make asthma worse.

What causes asthma symptoms?

Many children with asthma have allergies. Coming into contact with an allergen can set off asthma symptoms. Common allergens are: dust mites, animal dander, mold and pollen.

Other triggers include air pollution, smoke, exercise and infections in the airways. Asthma symptoms may be brought on by a change in air temperature, perfumes and odors from cleaning products.

How can you help your child?

Understand your child’s asthma condition as much as possible. Learn how to minimize triggers and know what to do in the event of an asthma flare-up. The American Academy of Pediatrics (AAP) offers ways to avoid asthma triggers or irritants.

What are common treatments?

Depending on how mild or severe your child’s asthma condition is, treatments will vary. Often quick relief medicines (such as inhalers) will be prescribed to help stop an asthma flare-up. These medicines help to open the airways making breathing easier.

Long term treatments include medications that aim to keep the lungs from becoming inflamed. These medications help prevent flare-ups, and need to be taken even when there are no asthma symptoms.

What about childcare and school?

The AAP has helpful info on the various treatments available and offers management tips for different situations such as at home or school.

The CDC has recommendations on how you can make your child’s childcare or school environment as successful and asthma free as possible. In the United States, there are laws to help your child at school. For example, a 504 plan might be needed to help your child access his education through reasonable accommodations.

What should you ask your child’s health care provider?

Ask for an individualized asthma action plan. This is a written plan to help your child avoid his particular triggers and respond to asthma symptoms. The plan aims to give you more control of your child’s condition, and hopefully, to avoid emergency situations. The plan can be used anywhere – at home, day care or school.

How can your child understand his asthma?

There are books, videos and podcasts available that you can explore with your child to help him learn about his condition (if he is old enough to understand):
• How to use your asthma inhaler video shows kids using an inhaler properly.
• Dusty the asthma goldfish and his asthma triggers is a downloadable fun book that helps kids and parents understand triggers.
• The CDC’s Kiddtastics podcast is another way for parents and kids to learn about managing symptoms.
• Here are other resources specifically geared towards kids. Check them out.

Bottom line

No two children are alike, and each asthma case is unique. As with any health condition, be sure to speak with your child’s health care provider about all of your concerns. With knowledge, medical advice and an action plan, your child can live a very full and active life.

Have questions? Send them to AskUs@marchofdimes.org

Read more about how to help your child with a delay, disability or health condition.

 

Tags: 504 plan, asthma, chidren's resources, coping, delays, management, preemies, prematurity, school, triggers

Getting healthy between pregnancies

Are you getting ready to celebrate Mother’s Day? Flowers, handmade cards, and breakfast in bed are all lovely gifts. But one of the most important things that you can do as a mom is to give yourself the gift of a healthy pregnancy. If you are planning to have another baby sometime in the future, start now to make sure that your body is ready.

The interconception period is the time between the end of one pregnancy and the beginning of another pregnancy. This time between pregnancies allows you and your provider to address any risk factors that may have contributed to prior pregnancy complications, including premature birth, preeclampsia or gestational diabetes.
Here are some things to consider during the interconception period:

• Birth spacing: Before getting pregnant again, it is best to wait at least 18 to 23 months. This gives your body time to recover from the previous pregnancy.
• Preexisting medical conditions: Diabetes or high blood pressure can affect your pregnancy. Making sure these conditions are under control before you get pregnant again is very important. Now is the time to alter any medication dosages or change prescriptions completely. It is also the time to modify any lifestyle factors that may be contributing to your condition.
• Weight: Trying to get to a healthy weight before pregnancy is very important. Being overweight or not weighing enough can affect your ability to conceive. And if you’re at a healthy weight before pregnancy, you’re less likely than women who weigh too little or too much to have serious complications during pregnancy.
• Smoking: When you smoke during pregnancy, you pass harmful chemicals through the placenta and umbilical cord into your baby’s bloodstream. This can cause health problems for your baby. Being exposed to secondhand smoke during pregnancy can cause a baby to be born with low birthweight. And secondhand smoke also is dangerous to your baby after birth. Try to quit smoking before getting pregnant again.
• Family history: Your family health history can help you and your provider look out for health problems that may run in your family and it may help to find the cause of any past pregnancy problems.
• Getting enough folic acid: Finally, make sure you continue to take 400 micrograms of folic acid every day. All women of child-bearing age, even if they’re not trying to get pregnant, should take folic acid. Folic acid helps prevent neural tube defects but only if taken before pregnancy and during the first few weeks of pregnancy, often before a woman may even know she’s pregnant. Because nearly half of all pregnancies in the United States are unplanned, it’s important that all women take folic acid every day.

All of us here at News Moms Need wish you a very happy and healthy Mother’s Day!
Questions?  Send them to AskUs@marchofdimes.org.
Tags: birth spacing, diabetes, family health history, folic acid, healthy weight, interconception health, preconception health, preeclampsia, pregnancy after premature birth, smoking during pregnancy

Are you at increased risk for diabetes?

Do you know that having gestational diabetes during pregnancy significantly increases a woman’s future chances of developing diabetes? About 9 out of 100 women in the U.S. have diabetes – a condition in which your body has too much sugar (called glucose) in the blood. Glucose is your body’s main source of fuel for energy. Insulin is a hormone that helps the glucose get into your cells to give them energy. If your body does not produce insulin or cannot use it efficiently, then over time, high blood sugar can lead to serious problems with your heart, eyes, kidneys, and nerve cells. You can develop diabetes at any time in your life.

There are three different types of diabetes:

• Type 1 diabetes happens most often in children and young adults but it can develop at any age. With type 1 diabetes, your body does not make insulin.
• Type 2 diabetes is more common. With type 2 diabetes your body does not make or use insulin well. You are at an increased risk for type 2 diabetes is you are older, overweight, have a family history of diabetes, or do not exercise.
• Gestational diabetes is a kind of diabetes that can happen during pregnancy. Seven out of every 100 pregnant women (7 percent) develop this type of diabetes. Gestational diabetes usually goes away after you give birth. But if you have it in one pregnancy, you’re more likely to have it in your next pregnancy. You’re also more likely to develop diabetes later in life.

Diabetes is a serious health concern, especially when left untreated or undiagnosed. You can find out if you’re at risk for type 2 diabetes by taking the Diabetes Risk Test. If diabetes is not diagnosed and treated the condition can lead to serious health problems including heart disease, stroke, blindness, kidney disease, amputation and even death.

The good news though is that research has shown that type 2 diabetes can be prevented or delayed in persons with increased risk by losing a small amount of weight and getting 30 minutes of moderate-intensity physical activity, such as brisk walking, five days a week. Making a few simple changes in your lifestyle can make a big difference in your health. Learn small steps you can take here.

Tags: diabetes, Diabetes Alert Day, diabetes in pregnancy, gestational diabetes, type 2 diabetes

Formula switching- what you need to know

Moms may decide to change formula brands for a variety of different reasons. My friend recently told me she bought a new formula for her baby because she had a coupon for a different brand. Her baby was not able to digest the new formula as well as the old brand; she did not anticipate that changing formula brands would be a problem for her baby.

Here are some tips to keep in mind if you are thinking of switching formula brands.

First of all, there are several basic types of formula in your local grocery store:

• Cow’s milk-based formulas: Made of treated cow’s milk that has been changed to make it safe for infants.
• Hydrolyzed formulas: often called “predigested” meaning the protein content has already been broken down for easier digestion.
• Soy formulas: contain a protein (soy) and carbohydrate (either glucose or sucrose), which is different from milk-based formulas. Soy formulas do not contain cow’s milk.
• Specialized formulas – for infants with specific disorders or diseases. There are also formulas made specifically for premature babies. Often babies who are allergic to lactose (found in cow’s milk) or soy protein may need a specialized formula.

Formula can also be found in three different forms: Ready-to-feed liquid (which can be fed to your baby immediately), concentrated liquid or powder (which needs to be mixed with water before feeding). Be sure to learn the do’s and don’ts of bottle preparation and feeding.

Reasons to change formula

Some reasons to switch formulas are if your baby has a food allergy or needs more iron in her diet. Switching may also help your baby if she has diarrhea, is fussy or hard to soothe. Your baby’s doctor can determine if switching the formula may help, or if there is some other medical condition going on that is causing your baby’s distress. But, before switching your baby’s formula, speak with her pediatrician.

It is possible for a baby to have an allergic reaction to a formula. Reactions include:

• vomiting
• diarrhea
• abdominal pain
• rash
• hives (itchy, red bumps on the skin)

These, and other symptoms may be a sign to change formulas, or they may also be a sign of something unrelated to your baby’s formula. If the reaction is unrelated to the formula, changing formulas could make your baby’s symptoms worse. This is why it’s important to always talk to your baby’s health care provider before making any changes.

If your doctor gives you the OK to switch formulas, he will recommend a plan of action on how to introduce the new formula so that the transition goes as smoothly as possible.

Keep in mind

All formulas made in the U.S. are regulated by the Food and Drug administration and meet strict guidelines, but always check the expiration date on the formula packaging and don’t use damaged cans or bottles.

For more information see this blog post.

Tags: allergic reaction, changing formula, feeding your baby, food allergy, formula, formula switching, soy formula, specialized formula

 

Avoid a tragedy – learn safe sleep strategies

Every so often, we hear a tragic story from a new parent. Last week, a three week old baby died of SIDS (sudden infant death syndrome). This post is in memory of that baby, and our hearts go out to the family.

It is important for parents and caregivers to know safe sleep strategies. Please help us get the word out: ALWAYS, put your baby to sleep on her back, in a crib without bumpers, blankets, stuffed toys or loose bedding.

Back to Sleep and Tummy to Play is an easy way to remember that all healthy babies should be put to sleep on their backs every time until their first birthday. Do not put your baby to sleep on her side, either. Most babies will roll over both ways by the end of the 7th month, but always start them out going to sleep on their backs. You can give your baby tummy time to help strengthen her back muscles when she is awake and you are watching her.

About 4,000 infants (less than one year of age) die suddenly and unexpectedly each year in the United States, according to the CDC. SIDS is the leading cause of death in babies between 1 month and 1 year old. Most SIDS cases happen in babies between 2 and 4 months old. We don’t know what causes SIDS, but certain things can put babies at higher risk:

• Bed sharing – do not sleep in the same bed as your baby. Sleeping in the same room is suggested, just not the same bed. Bed sharing is the biggest risk factor for SIDS in babies under 4 months of age.
• Sofa or couch sleeping – do not let your baby sleep on the couch or soft surfaces, including pillows. Nearly 13 percent of infant sleeping deaths are sofa-related.
• Wearing too many clothes or sleeping in a room that is too hot.
• Sleeping on her tummy or side.

Read more about safe sleep, mom and baby care and other tips for reducing the risk of SIDS.

If you have questions about putting your baby to sleep, send them to AskUs@marchofdimes.org or ask your baby’s health care provider.

If you or someone you know has lost a baby due to SIDS or an unknown reason, the Pregnancy and Newborn Health Education Center offers bereavement packets to families. Just email us with your mailing address and we will send one to you.

See other topics in the series on Delays and Disabilities- How to get help for your child, here.

Tags: baby care, bed sharing, bereavement, couch sleeping, infant death, loss, safe sleep, SIDS, sudden infant death syndrome, tummy time

 

Why We Walk Wednesday! Natalie

In 1999, I became pregnant with my third child. After giving birth in December of 1998 to a baby boy, I was ecstatic to think I was expecting again. The pregnancy started out like the other two, but at 4 months, I felt an odd pressure that felt like I was about to give birth. We rushed to our doctor and shortly after being examined, I was told I had an "Incompetent cervix" and needed to have a procedure to sew my cervix closed. I was prescribed bed rest for the remainder of my pregnancy. Before doing the procedure, an amniocenteses was performed, and I found out that we would be expecting a baby girl. 

I remained very disciplined with my bed rest. However, at 20 weeks, my water broke. I was rushed to Georgetown hospital where the doctors said that if I was put in "Trendelenburg" -- basically positioned upside down -- that my amniotic fluid could replenish. I remained steadfast in my determination to deliver my daughter healthy. I stayed in Trendelenburg for 8 weeks. I had been experiencing leg pain in my left leg from week 21, which the doctors and nurses treated with pain medication  Unfortunately, the pain turned out to be a severe DVT (Deep vein thrombophlebitis) and after many attempts to hold off my labor with treatment of Heparin I was rushed into surgery.

On November 28, 1999, Natalie Elizabeth Simonson was born. She also died that day after fighting 8 long hours to survive. Her little lungs were not strong enough. I was never able to meet her, as I was in critical condition from losing so much blood. The surgery left me in ICU for 4 days. I believe it was God’s way of protecting me from the horrific loss of my baby girl.

If I were to go through the same today, because of the March of Dimes, research would have had me on preventive measures to avoid DVTs in women on bed rest. As well as the advances in premature deliveries and babies and their survival. It took me a long time to recover from the loss of my child. The pain for our family is something no one should have to experience. I chose to work with the March of Dimes to help our future generations have a better chance.