Phenylketonuria (PKU)

25
Jul
Posted by Sara

newborn-screening-picture1Phenylketonuria (also called PKU) is a condition in which your body can’t break down an amino acid called phenylalanine. All babies born in the United States are tested for PKU through the newborn screening program in their state.

What is phenylalanine? 

Phenylalanine is an essential amino acid. Amino acids are building blocks for proteins. Our bodies need amino acids for proper growth and development but we cannot make them on our own. We need to get them from food sources. Phenylalanine is found in most foods that contain protein. This includes beef, poultry, fish, soy products, eggs, cheese, etc.

Once phenylalanine is in the body, it is converted into tyrosine, another amino acid. Tyrosine is then used by the body in a variety of ways, including the formation of chemicals that are necessary for your brain to function properly.

Why is phenylalanine harmful for people with PKU?

If your baby is born with PKU, she cannot break down phenylalanine. Phenylalanine then builds up in the blood and interferes with normal brain development. Without treatment, babies born with PKU begin to have signs of the condition at about 6 months of age. These include:

  • Jerky movements in arms and legs
  • Seizures
  • Skin rashes
  • Small head size
  • Developmental delays and behavioral problems

What causes PKU?

PKU is inherited. This means it’s passed from parent to child through genes. A gene is a part of your body’s cells that stores instructions for the way your body grows and works. Genes come in pairs—you get one of each pair from each parent. Sometimes a change in a gene can cause it to not work correctly. This change is known as a mutation.

Your baby has to inherit a mutation for PKU from both parents to have PKU. If she inherits the mutation from just one parent, your baby is called a PKU carrier. A PKU carrier has one copy of the mutation but doesn’t have PKU.

How is PKU treated?

If your baby is diagnosed with PKU, then she will need to be on a special diet that significantly reduces the amount of phenylalanine she consumes. Ideally the diet would begin in the first few days of life. Babies who have PKU may never show symptoms if they are transitioned to a low-phenylalanine diet soon after birth.

If your baby is diagnosed with PKU, she will need to maintain a low-phenylalanine diet for life. If she were to stop controlling her dietary intake of phenylalanine, changes in the brain would occur, even well into adulthood. Women who have PKU and wish to become pregnant need to be on a very well controlled diet in order to protect their baby during pregnancy.

If you have any questions about this topic or other pregnancy and newborn health issues, please email the Pregnancy and Newborn Health Education Center at askus@marchofdimes.org.

Special moms need special care

23
Jul
Posted by Barbara

two women meditatingA new study published in Pediatrics shows that groups led by other moms reduced stress in mothers of children with disabilities. It helped to improve “maternal well-being and long-term caregiving for children with complex developmental, physical, and behavioral needs.” These support groups were uniquely focused on learning specialized techniques to reduce stress.

Mothers of children with developmental disabilities experience stress, anxiety and depression more often and to a greater degree than mothers who parent children without disabilities. It is thought that the chronic stress and the associated poor health that often result may impact a mom’s ability to parent effectively.

This study looked at what would happen if a program were put in place specifically for moms of children with disabilities (or what I will call “Special Moms”).  Researchers randomly assigned 243 Special Moms into two groups to attend a program led by peer mentors (eg. other Special Moms who received training to lead the groups).

One group learned Mindfulness-Based Stress Reduction (MBSR) techniques while the other group learned Positive Adult Development (PAD) techniques. MBSR and PAD are evidence-based practices, which mean that they have been shown, through research, to be beneficial.

The MBSR group learned meditation, breathing and movement techniques and the relaxation response. The PAD group learned ways to “temper emotions such as guilt, conflict, worry and pessimism by identifying and recruiting character strengths and virtues…and by exercises involving gratitude, forgiveness, grace and optimism.” All the moms attended weekly group sessions and practiced what they learned at home on a daily basis.

What were the results?

According to the study, the moms in both groups experienced less stress, anxiety and depression, and improved sleep and life satisfaction.  After 6 months, these improvements continued. There were some differences between the two groups that related to whether they received the MBSR or PAD practice, but the important take-away from this study is that both treatments proved beneficial to the moms.

There are programs in place to help children with disabilities, but few programs exist to help their parents, especially when the stress causes mental, emotional and physical fatigue. Moms often become anxious or depressed, which does not help them as they face the intense daily challenges of parenting a child with a disability. This study shows the positive effect of proven stress reduction techniques when taught in a peer-mentored program.

The authors conclude that “future studies should be done on how trained mentors and professionals can address the mental health needs of mothers of children with developmental disabilities since doing so can improve maternal well-being and long-term caregiving for children with complex needs.”

Bottom line

If you are a Special Mom, your personal take-away message from this study is to try to include a stress reduction program into your daily life, such as meditation, yoga, or another relaxation technique. If you can do so with a group of other Special Moms, all the better!

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

Cleft and craniofacial awareness and prevention month

21
Jul
Posted by Lauren

July is cleft and craniofacial awareness and prevention month. Craniofacial abnormalities are  defects of the head (cranio) and face (facial) that are present when a baby is born. Cleft lip and/or cleft palate are a couple of the most common abnormalities.

Craniofacial abnormalities can range from mild to severe. These defects can present a variety of problems including eating and speech difficulties, ear infections and misaligned teeth, physical learning, developmental, or social challenges, or a mix of these issues. However, there are steps you can take to help prevent cleft and craniofacial defects before your baby is born.

What increases the risk of having a baby with craniofacial abnormalities?

We’re not sure what causes these defects. Some possible causes are:

• Changes in your baby’s genes. Genes are part of your baby’s cells that store instructions for the way the body grows and works. They provide the basic plan for how your baby develops. Genes are passed from parents to children.

• Diabetes. Women who have diabetes before they get pregnant have a higher risk of having a baby with a cleft or craniofacial birth defect.

• Maternal thyroid disease. Women who have maternal thyroid disease or are treated for the disease while they are pregnant have been shown to have a higher risk of having a baby with an abnormality.

• Not getting enough folic acid before pregnancy. Folic acid is a vitamin that can help protect your baby from birth defects of the brain and spine called neural tube defects. It also may reduce the risk of oral clefts by about 25 percent.

• Taking certain medicines, like anti-seizure medicine, during pregnancy.

• Smoking during pregnancy.

• Drinking alcohol during pregnancy.

• Having certain infections during pregnancy.

How can you prevent cleft and craniofacial defects?

There are steps you can take to decrease the chance of having a baby with cleft and craniofacial defects.

• Before pregnancy, get a preconception checkup. This is a medical checkup to help make sure you are healthy before you get pregnant.

• Take a multivitamin that contains folic acid. Take one with 400 micrograms of folic acid before pregnancy, but increase to one with 600 micrograms of folic acid during pregnancy. Your provider may want you to take more – be sure to discuss this with him.

• Talk to your provider to make sure any medicine you take is safe during pregnancy. Your provider may want to switch you to a different medicine that is safer during pregnancy.

• Don’t smoke.

• Don’t drink alcohol.

• Get early and regular prenatal care.

If you have any question about cleft or craniofacial defects, causes or prevention, read more here or email us at Askus@marchofdimes.com.

Group B strep infection

18
Jul
Posted by Sara

Between 35-37 weeks of your pregnancy your prenatal care provider will test you for Group B strep. Group B streptococcus (also called Group B strep or GBS) is a common type of bacteria that can cause infection.

Many people carry Group B strep—in fact about 25% of pregnant women are carriers.  GBS bacteria naturally live in the intestines and the urinary and genital tracts. It is not known how GBS is transmitted in adults but you can’t get it from food, water, or things you touch. An adult can’t catch it from another person or from having sex, either.  Most people do not even know they are carriers since adults usually show no signs or symptoms related to GBS.

GBS, however, can be passed to your newborn during labor and delivery and it can make your baby very sick. Babies with a GBS infection may have one or more of these illnesses:

• Meningitis, an infection of the fluid and lining around the brain

• Pneumonia, a lung infection

• Sepsis, a blood infection

According to the CDC, in the US, group B strep is the leading cause of meningitis and sepsis in a newborn’s first week of life.

There are two kinds of GBS infections:

1. Early-onset GBS: Signs like fever, trouble breathing and drowsiness start during the first 7 days of life, usually on the first day. Early-onset GBS can cause pneumonia, sepsis or meningitis. About half of all GBS infections in newborns are early-onset.

2. Late-onset GBS: Signs like coughing or congestion, trouble eating, fever, drowsiness or seizures usually start when your baby is between 7 days and 3 months old. Late-onset GBS can cause sepsis or meningitis.

The good news is that early-onset GBS infection in newborns can be prevented by a simple test. During your third trimester, your provider will take a swab of the vagina and rectum. Results are available in a day or so. This test will need to be done in each pregnancy.

If you do have GBS, then your provider will give you an antibiotic through an IV (medicine given through a tube directly into your bloodstream) during labor and delivery. Usually this is penicillin (if you are allergic to penicillin, there are other options available). Any pregnant woman who had a baby with group B strep disease in the past, or who has had a bladder (urinary tract) infection during this pregnancy caused by group B strep should also receive antibiotics during labor.

Unfortunately late-onset GBS cannot be prevented with IV antibiotics. Late-onset GBS may be due to the mother passing the bacteria to her newborn, but it may also come from another source, which is often unknown.

Treatment for babies infected with either early-onset GBS or late-onset GBS is antibiotics through an IV.

Currently researchers are testing vaccines that will help to prevent GBS infections in both mothers and their babies.

If you have any questions about this topic or other pregnancy and newborn health issues, please email the Pregnancy and Newborn Health Education Center at askus@marchofdimes.org.

Medication dosing mistakes are common

16
Jul
Posted by Barbara

medicine syringe for kidsWhether you have a child with special needs or not, chances are you have given him medication at some point. A recent study published in Pediatrics revealed that many parents made mistakes when giving their child medication. “Medication errors were common: 39.4% of parents made an error in measurement of the intended dose, 41.1% made an error in the prescribed dose. Furthermore, 16.7% used a nonstandard instrument.”

The study compared parents who used milliliter-only cups or syringes with parents who used teaspoon or tablespoons to describe how they measured their child’s medicine. The researchers found that parents who described measuring the medication in teaspoons or tablespoons were twice as likely to make a mistake in giving the correct dose.

In addition, many parents did not understand the correct amount of medicine to give their child and mixed up the measuring terms. According to the American Academy of Pediatrics (AAP), “Parent mix up of terms like milliliter, teaspoon and tablespoon contribute to more than 10,000 poison center calls each year.”

Why does this happen?

One reason is because all spoons are not created equal. Dosing mistakes happen because people confuse teaspoons with tablespoons. Did you know that one tablespoon equals three teaspoons?!

Another reason is that people use everyday kitchen spoons instead of medication measuring spoons which are specifically designed to give an accurate dose. Again, the differences in the spoons can produce very different amounts of medicine given to your child.

What can you do?

• When measuring meds, use the oral syringe, dropper, or cup that comes with the medication. Do not use one medicine’s cup for another medicine. Measure carefully and exactly.

• Do not use kitchen teaspoons or tablespoons because there is a wide variety of kitchen spoons which can hold vastly different amounts of liquid.

• If you are giving a non-prescription medication (such as Tylenol or any over-the-counter medicine), be sure to give the dose that is based on your child’s weight, not his age. If in doubt, ask a doctor, nurse, physician assistant or pharmacist.

• Keep a log. Use your smartphone or a notebook to record the medication, date, time and amount that you gave your child. It is very easy to forget when you gave your child a medication, especially if you are giving more than one medication at different times during the day. Parental fatigue, multitasking and stress can also cause you to forget.  In addition, a medication “log” is very important if more than one person is giving medicine to your child.

• If in doubt, ask your child’s health care provider or your pharmacist. It could save your child’s life.

Learn more

• Check out the AAP’s video guide on how to measure meds and read about useful medication tips here.

The study’s authors suggest that children’s liquid medications only be prescribed in milliliters to help eliminate dosing mistakes or confusion. The AAP and CDC support this change. What do you think?

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

Join our Twitter Chat on smoking and women’s reproductive health

14
Jul
Posted by Lauren

chatAre you pregnant? Hoping to be pregnant? Do you smoke? Are you worried about the possible effects on your baby?

Join us on Wednesday, July 16th from 2-3pm ET, for a Twitter chat on smoking and women’s reproductive health.

We are joining the CDC, the Office of the Surgeon General and other guests to discuss the newest information on this topic. Learn how you can protect yourself and your  baby from the harmful effects of smoking. We will discuss the findings of the recent Surgeon General’s report on smoking, as well as the services and resources available in your community to help you or loved ones quit smoking.

We’d love for you to share your tips and experiences with us. Jump in the conversation at any time to ask questions or tell us your story.

Just follow #SGR50chat. We hope to see you then!

Kids in cars – preventing deaths due to heat

11
Jul
Posted by Barbara

sunIt takes a very short amount of time for a car to heat up to dangerous temperatures. Recently, I heard about another baby who died due to being left in a hot car. Tragically, it happens far too often.

From 1998 – 2013, 622 children have died from heatstroke (extreme overheating) in a vehicle. Nearly half of those cases were due to the parent or caregiver forgetting that their child was in the car. The other half were due to children playing in an unattended car, an adult deliberately leaving a child in a car, and other unknown reasons.

According to the AAP, “Even at relatively cool ambient temperatures, the temperature rise in vehicles is significant on clear, sunny days and puts infants at risk for hyperthermia. Vehicles heat up rapidly, with the majority of the temperature rise occurring within the first 15 to 30 minutes. Leaving the windows opened slightly does not significantly slow the heating process or decrease the maximum temperature attained.”  For example, on a day when the outside temperature is in the mid 80′s, temperatures inside a car can reach 130 – 150 degrees!  And, because a child’s body heats up more quickly than an adult’s, he is at a higher risk for heatstroke and death.

Know the facts. According to safercar.gov:

•    In 10 minutes, a car can heat up 20 degrees Fahrenheit.
•    Cracking a window does little to keep the car cool.
•    With temperatures in the 60s, your car can heat up to well above 110 degrees.
•    A child’s body temperature can rise up to five times faster than an adult’s.
•    Heatstroke can happen when the temperature is as low as 57 degrees outside!
•    A child dies when his/her temperature reaches 107.

These accidents usually happen to responsible, well-intentioned parents or caregivers. People get distracted, don’t pay attention, are overly stressed or tired and forget that their child is in the back seat. Rear facing car sears also make it impossible to see your baby, which makes it easier to forget he is there.

How to avoid this tragedy

Here are suggestions for making sure this tragedy doesn’t happen in your family:

•    When you get in the car, put your purse, briefcase, backpack or whatever you carry, in the back seat. When you open the door to take it out, you’ll take your baby with you.

•    Always lock your car. Never leave car doors unlocked or allow children to play in cars.

•    Never leave your child alone in the car – not even for a minute!

•    Keep your child’s snowsuit (or something else unusually noticeable) in his car seat when he is not in it. When your child is in the car, put the snowsuit in the front seat next to you. It will look odd and remind you that he is in the back.

•    Keep a pacifier in the car and put it over your keychain whenever you drive with your child. It will remind you when you turn off the engine to take your quiet, sleeping baby with you.

•    Just as you have learned to put on your seatbelt every time you get in the car, train yourself when you get out to walk around the car and look in the back windows, or open and shut every door of the car if your windows are tinted dark.

•    Create a checklist to give to grandparents and babysitters or anyone else who drives your child.

•    It is just as dangerous to leave a pet in a car, even with the windows cracked open.

In my home state of Connecticut, one police department made decals available to the public which read “Closed cars don’t breathe. Check your seats before you leave.” People put the decals in their car on the dashboard, on the driver’s window, on their garage door, front door of their home, and other places to remind them to check the back seat of the car before walking away. Whatever method you choose, be consistent and get in the habit of doing it every time you get in/out of your car. It could save your child’s life.

Please remember, if you see an infant or child alone in a car, call 911.

Graco® adds 1.9 million infant car seats to recall

10
Jul
Posted by Ivette

A few months ago, Graco recalled about 4 million toddler convertible car and booster seats because of a problem with the seat belt buckles. Now, Graco is including another 1.9 million infant car seats with the same buckle problem to the recall.

The belt buckle on the car seat can get sticky and hard to release when food or dried liquid gets into the buckle. This makes it difficult to unbuckle a child from her car seat. Some parents said they had to cut the car seat straps to get their child out of the car seat. My child uses one of the recalled car seats and I, too, have had trouble unbuckling her from time to time.

The recall now includes Graco’s infant car seats made between 2010 and 2013. The models include:

• SnugRide
• SnugRide Classic
• SnugRide 30
• SnugRide Classic Connect 30
• SnugRide 35
• SnugRide Classic Connect 35
• SnugRide Click Connect 40
• Aprica A30

If your child uses one of the recalled car seats, you can order a free replacement buckle online. I used the online order form and it was quick and easy. You also can contact Graco at consumerservices@gracobaby.com or call (800) 345-4109.

For more information about the 2014 Graco car seat recall, visit the Graco website. Learn more about car seats.

Everyday tips for dealing with sensory special kids

09
Jul
Posted by Barbara

hair washingMany kids with sensory issues struggle with typical everyday activities. Here are suggestions from parents of children with sensory difficulties to help you get through each day in a sensory friendly way.

Some kids find bath time and hair washing to be a stressful experience. For other children, getting dressed in the morning or eating meals can be incredibly challenging. Yet others cringe at hearing typical sounds or noises. Here is what some parents recommend:

Tips for bathing

•    Let your child get in the bath when the water temperature feels right to him. He may need to stand in it a while before sitting down, in order to adjust to the feel of the water on his skin.
•    During hair shampooing, use a little pail or plastic bucket to rinse hair instead of using the shower nozzle. Water coming from a shower nozzle can be too direct and forceful.
•    When your child is old enough, allow him to rinse his own hair. Being in control of the pail and the water on his own head is less shocking to him than when someone else pours water on his head.
•    Use a facecloth to cover his face if water on the face will cause distress. Then allow your child to wipe his own face with a damp facecloth.
•    Use distractions in the bath, such as bath foam or toys, to make bath time more appealing.
•    Let your child decide if showering is preferable to bathing (when he is old enough).

Tips for dressing

•    Remove tags from clothing before wearing.
•    Let your child decide what kinds of clothes feel good on his skin. Usually brushed flannel or soft cotton or acrylic fabrics work well, but your child will know.
•    If your child hates getting dressed in the morning (due to the sensory changes), dress your child the night before in the clothes he will wear the next day. In other words, let him wear his clean clothes to bed. He may look a tad more wrinkled in the morning, but he will get his day off in a sensory calm way.
•    When you find a pair of pants, a shirt or outfit that your child loves (i.e. it “feels right”), buy two of them. This way, one can be laundered when the other one is being worn. Or, buy them in different colors if possible. Comfort- not fashion -is key here.

Tips for eating

•    As much as possible, have healthy choices available. If you know your child loves chicken with pasta, then child using forkmake a double portion. This way you can feed it to him another night in the same week, even if the rest of the family is eating something different. This allows you to eat together as a family and yet you did not cook two meals in one evening.
•    Freeze individual portions for meals on the fly, for the babysitter to serve to him, or when the family meal is sure to be too hard for your child to swallow (literally).
•    Ask your child’s pediatrician or consult with a Registered Dietician who is familiar with sensory issues to learn other ways of getting your child to eat a healthy diet. Perhaps mixing vitamin powder into your child’s food (such as spaghetti sauce) or offering protein shakes will substitute nutrients that your child may be missing.

Tips for sound sensitivity

•    Prepare your child for events that may be uncomfortable, such as large assemblies with people clapping, musical events, a meal in a big restaurant, birthday parties, etc. Soft ear plugs are often helpful to use at these events so keep them handy. Other children prefer noise-cancelling headphones.
•    Once home, provide a quiet environment so your child’s ears can rest.

Learn more

These are just a few tips for getting through a day in a sensory successful way. See my prior posts: Sensory difficulties in children to learn more about the different kinds of sensory problems that exist, and Help for sensory issues to learn about different treatments. Ask your child’s pediatrician if a treatment such as Sensory Integration Therapy (a form of Occupational Therapy) may be helpful. You can also discuss other treatments which are available.

Feel free to share what has worked for you and your child. We’d love to hear from you!

If you have questions, or would like more information, please write to us at AskUs@marchofdimes.com.

Note:  This post is part of the weekly series Delays and disabilities – how to get help for your child. It was started in January 2013 and appears every Wednesday. While on News Moms Need and click on “Help for your child” in the Categories menu on the right side to view all of the blog posts to date (just keep scrolling down). We welcome your comments and input.

Thirdhand smoke is dangerous

07
Jul
Posted by Lauren

child on floorThirdhand smoke, the residue left behind in a room where someone has smoked, is harmful to your child.

You have heard how smoking can negatively affect your pregnancy by causing birth defects and nearly doubling your risk for preterm birth. You may also know about the harmful effects of secondhand smoke on your health and that of your children.

What is thirdhand smoke?

Thirdhand smoke is the residual chemicals and nicotine left on surfaces by tobacco smoke. The American Academy of Pediatrics (AAP) states that a few days or weeks after a cigarette is smoked, particles remain on all types of surfaces. Thirdhand smoke can be found anywhere – on the walls, carpets, bedding, seats of a car, your clothing, and even in your child’s skin and hair. Long after someone has stopped smoking, thirdhand smoke is present. Infants and children can inhale, ingest and touch things that result in exposure to these highly toxic particles.

Thirdhand smoke can be just as harmful as secondhand smoke and can lead to significant health risks. The AAP says that children exposed to smoke are at increased risk for multiple serious health effects including asthma, respiratory infections, decreased lung growth, and sudden infant death syndrome (SIDS).

The residue left from smoking builds up over time. Airing out rooms or opening windows will not get rid of the residue. In addition, confining smoking to only one area of the home or outside will not prevent your child from being exposed to thirdhand smoke.

There are ways you can limit or prevent thirdhand smoke. AAP recommends:

• Hire only non-smoking babysitters and caregivers.

• If smokers visit your home, store their belongings out of your child’s reach.

• Never smoke in your child’s presence or in areas where they spend time, including your home and car.

• If you smoke, try to quit. Speak with your child’s pediatrician or your own health care provider to learn about resources and support.

The only way to fully protect against thirdhand smoke is to create a smoke-free environment. For more information on how to quit smoking, visit http://smokefree.gov/.