Category Archives: Parenting

Preparing yourself for your child’s surgery

Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital. (2013 file photo)

Jeri Kayser

When a child needs surgery, the focus of preparation usually is with the child.

That makes sense.

We want our kids to understand what’s about to happen so they aren’t overwhelmed or traumatized by the event. They’re kids, after all, and we adults have to deal with it, right? Or, perhaps, wrong.

After more than 30 years as a child life specialist, 20 of those in surgery, I have observed that the first person to be well-prepared should be the parent. Children respond most directly to how their parents are reacting emotionally to the event to gauge their own response.

Imagine you are 3 years old and about to get your tonsils out. This is scary because it’s hard to understand what’s about to happen and frustrating you can’t control it. Age-appropriate information and a supportive staff are helpful, but if you notice your mom or dad is anxious, nothing else matters. You got the message: You should be anxious, too, especially if your parents are trying to suppress their emotions – that is even scarier to a child. You can tell that they are upset, but you don’t know why, so you imagine the worst. If you’re a teenager, you might pick up on the message that we don’t talk about this and it will upset your mom if you bring it up to her. It’s hard to deal with the unspoken stress of your family as well as your own fears and concerns.

When I’ve observed kids coping successfully with the challenges of a health care experience, I have noticed that their families have prepared themselves with some or all of the following techniques:

Seek information

Find out what is happening and why. What are the expected outcomes?  What types of things can you as a family plan on doing to foster your child’s healing?

Attend a pre-admission tour

On our hospital’s website there is helpful information about surgery and how to sign up for a tour. Visiting the hospital ahead of time gives everyone a chance to learn more about what to expect and what’s helpful to do ahead of time or bring with you when you come to the hospital.

Make a list

Write down a list of questions to bring to meetings with health care providers. I remember one family kept an ongoing list in their kitchen for anyone to write down questions, and they all contributed, even the siblings. Everyone had a say, and the questions helped everyone feel a part of the event. Knowledge helps you be in control and having specific tasks you can do to support your child in his or her recovery provides focus and direction.

subscribe_blogBe honest with your emotions

As a parent, our job is to love and protect our kids and guide them towards being an independent adult. It can be overwhelming to have to make decisions for your child that includes any potential discomfort since we so desperately want to keep him or her safe from life’s struggles, but learning to deal with life’s struggles is what helps kids learn to be independent. We also carry with us our own memories and experiences with health care that may help or cloud our emotional response to our child’s experience. It helps to pay attention to where your emotions about surgery differ from your child’s. You each get to own your own perspective.

Kids do best when we are honest with them. When you label your emotions and show your child what you’re doing to help yourself, your child gets to experience some phenomenal role modeling on how to cope with challenging situations.

“I am sad that your tonsils need to come out, but I am glad that the doctors can fix this and soon you will be able to breathe better at night when you’re sleeping,” a parent can say. “Let’s think of some fun things to do while you are healing!”

Take care of yourself

You know yourself best. Helping your child through the experience of surgery can be exhausting. Think about what will help you be in your best place. Whom can you call on for support? Even small favors like having someone else pick up your other kids from school can be a great stress reducer.

Plan on something nice you can do for yourself while waiting for your child’s surgery to be done or when you get home. This also can help you and your child focus forward and be reminded of the time-limiting nature of the experience. It won’t last forever, and soon you’ll be looking back on this adventure.

Cut yourself some slack. There is no perfect person, so there can be no perfect parent. Your effort is what your child will notice and appreciate.

We grow as individuals and we grow as a family when we figure out what works best for us to deal with life’s challenges. This knowledge is precious and affirming and gives us all the more strength to deal with the next adventure.

Jeri Kayser is a child life specialist at Children’s Hospitals and Clinics of Minnesota.

Taking fear out of food-allergy diagnoses

(iStock photo)

(iStock photo)

Dealing with a food allergy diagnosis can feel daunting, especially for the uninitiated, due to its serious nature. But it doesn’t have to be — no parent or child has to face the new reality alone. There are doctors who specialize in food allergies, and there are groups and programs to educate and assist with how to live with food allergies.

The Food Allergy Support Group of Minnesota, founded in 2003, provides support to more than 650 members and is committed to guiding people through the confusion and fear that can come with a food-allergy diagnosis. Its mission is to empower families affected by food allergies by providing support, education and a community to build personal connections.

For the newly diagnosed, finding a board-certified allergist and learning what medications are commonly prescribed for food allergies are at the top of the list. Other actions include: knowing how to read food-ingredient labels, organize the kitchen and recipes, eat safely at restaurants, travel with food allergies, and partner with your child’s school.

All parents should know

It’s important for all parents and teachers to know about potential dangers and how to practice food safety, too. Kids with food allergies may encounter unsafe food or treats brought to school for lunch or holidays such as Valentine’s Day. Or a child’s friend visiting as a house guest may have a food allergy that requires consideration.

Preparing and taking precautions are not as difficult as you may think. Make sure you have the child’s emergency medications nearby and ask to review their Allergy Action Plan from their doctor. Here are some important steps to take if someone is showing symptoms of a food-allergy reaction:

  • Watch for symptoms, which may include hives, coughing or a tight throat.
  • Identify their symptoms on their Allergy Action Plan and determine if they are having a minor or severe reaction.
  • Give emergency medicine as directed, such as an epinephrine autoinjector (ex. EpiPen).
  • Call 911 for medical assistance and head to the hospital in an ambulance.
  • If possible, bring a smartphone or tablet to entertain your child during the wait.
  • Bring safe snacks.

Food or foe?

subscribe_blogEight foods account for more than 90 percent of food allergies in the U.S., according to the Food Allergy Support Group of Minnesota.

  • Milk (all dairy)
  • Eggs
  • Fish
  • Peanuts
  • Shellfish
  • Soy
  • Tree nuts
  • Wheat

The Big Quack

The Food Allergy Support Group of Minnesota (FASGMN) is hosting the ninth annual Big Quack, a family-friendly, food-allergy-safe event at the Water Park of America, from 4-8 p.m. April 19. Attendees will enjoy shorter lines as the park will be closed to the general public during this event.

The Big Quack event is a fundraiser to help support families who manage food allergies by providing special support groups and programming. Admission is $15 per person (if purchased in advance), which is roughly half of the usual price at the water park. No food allergies? No problem. All are welcome! For complete details or to order tickets, please visit FoodAllergySupportMN.org.

Food Allergy Resource Fair

The Food Allergy Resource Fair, which takes place on Oct. 12 at the Eisenhower Community Center in Hopkins, is an event open to the public that features allergy-friendly products and services from the U.S. and Canada. There are products for adults to sample and a safe trick-or-treat experience for kids with food allergies (all candy is free of the top-eight food allergens).

Find the Food Allergy Support Group of Minnesota at foodallergysupportmn.org,  Facebook, or email [email protected].

When to vaccinate against measles

Joe Kurland, MPH

Our infection prevention and control team has received questions about the measles, mumps and rubella (MMR) vaccine from a number of concerned parents since measles and vaccinations began dominating national news coverage. Here we highlight the number of recommended doses and the times to receive the vaccine.

I want to protect my child. What is the recommendation for the MMR vaccine in Minnesota now?

Children’s Hospitals and Clinics of Minnesota, like most medical centers, follows the guidelines for vaccination as recommended by the Centers for Disease Control and Prevention (CDC) and Minnesota Department of Health (MDH).

  • Every child should receive two doses of MMR vaccine, with the first dose given between 12 and 15 months of age and second dose between ages 4 and 6 years old. The second dose can be given earlier as long as it comes at least 28 days after the first dose.
  • If a child will be traveling outside of the U.S., he or she may be given a single dose of MMR if the child is between 6 and 12 months old. However, any dose given before the first birthday will not count towards the regular schedule, and the child still will need the two doses as outlined above.
  • If an older child is unimmunized and wants to “catch up” on his or her immunization schedule, the child will need two doses of MMR vaccine separated by at least 28 days.

subscribe_blogAs with all medical decisions, you should discuss your concerns and plan with your clinician. Currently, the CDC is not urging earlier-than-usual vaccinations, even for young children traveling within the U.S. or attending daycare. But as the measles outbreak changes, new guidance may become available. Please continue to check Children’s and CDC websites.

The Minnesota Department of Health reported an international-travel-related measles case on the University of Minnesota campus Jan. 28. To date, there have not been any additional cases in the greater community, and children are not at increased risk.

A few additional points to remember:

  • Two doses is all that is required, and after that the child is considered immune.
  • Blood testing for immunity (or titer levels) is not recommended by the CDC.
  • If adults are unsure of their vaccine status, they should get at least one dose of MMR.

If you have been hesitant to vaccinate your children, take this as a wakeup call. Vaccine-preventable diseases such as measles are active outside of the U.S. and may be just a plane ride away. You can and should protect your children; immunize them.

Joe Kurland, MPH, is a vaccine specialist and infection preventionist at Children’s Hospitals and Clinics of Minnesota.

Measles and how to protect against it

A rash forms three to five days after other measles symptoms start. (iStock Photo)

A rash forms three to five days after other measles symptoms start. (iStock Photo)

Joe Kurland, MPH

Something strange has been happening over the past few years. Infectious diseases are fighting back against the tools that have previously succeeded in protecting us all. In 2000, the U.S. announced that measles had been eliminated from the country. Our tools were so effective and some vaccine-preventable diseases were so rare, that they were all but unknown to a generation of parents and doctors. Sadly, these tools became a victim of their own success.

Measles

Measles is caused by a virus. Sometimes people say “it’s just a virus,” which ignores the fact that some of the most dangerous germs we know are viruses, measles included. It gets into your body when you inhale droplets sneezed or coughed out by someone who’s infected and is considered to be one of the most contagious diseases of which we known, with research showing that, on average, one sick person will infect as many as 18 people who are not protected. Nine out of 10 unimmunized people exposed will get measles because it is that easy to catch. This is partly because measles is an airborne virus; it can survive and infect other people who simply walk through the same room as an infected person. And the infected person doesn’t have to be in the room. The droplets are so small that the air in a room stays infectious for up to two hours after the ill person has left.

OK, measles spreads easily. But is it really that scary? What does it do?

After you’re exposed to measles, it takes between seven and 14 days to develop signs of the infection. The signs include high fever, cough, runny nose and red, watery eyes. You get a rash three to five days after those symptoms start. At first it looks like flat, red spots that show up on your head by your hairline and then spreads like a bucket of rash downwards. It covers your face, neck, chest, belly and finally your arms, legs and feet. The rash may be small, individual, raised, red bumps with flat tops, or they can join into large patches. Four days before the rash shows up, you can spread the virus to others.

For many people, the rash and fever go away after a few days, but for some there are complications. These can vary in severity from mild effects like ear infections and diarrhea to more severe symptoms such as pneumonia and swelling of the brain (encephalitis). Pneumonia is the most common (1 in 20 cases) cause of measles-related death in children, and encephalitis, while less common (1 in 1,000 cases), can cause seizures which may lead to deafness or mental disabilities. For every 1,000 children who get measles, one or two will die from it. Infections in pregnant women may result in premature delivery or a low-birth-weight baby.

You have my attention. What can I do if I’ve never had my shots and may have been exposed?

In the U.S., there are several factors working in a person’s favor:

A modern health system: Clinicians watch for measles and other diseases. If a case is found, they are required, by law, to report it to their local public health departments. The public health experts (epidemiologists) interview the sick person, notify anyone who may have been exposed and work to stop measles in its tracks by having people stay home while potentially contagious. 

Effective medication: There are no antiviral medicines available to treat measles. People exposed to the sick person can protect themselves if they act quickly. If the measles vaccine (MMR shot) is given in the first few days after exposure, it can stop the virus from making you ill.

Community immunity: This is perhaps the most effective tool we have. Community immunity (also known as herd immunity) stops a disease outbreak like a firewall by stopping the virus from reaching new hosts. If you surround an infected person with people who can’t get infected with measles — because they are immune, immunized or were previously infected — the virus cannot spread and the outbreak will end. Community immunity is especially important for families where someone is immune-suppressed or who have children younger than 1 year old who are too young to be immunized.

subscribe_blogSo, the vaccine is the best protection against measles. But some say the MMR vaccine is safe, while others say it is risky and may harm my child. What’s true?

All medical treatments have some risk. But after many studies examined MMR (measles, mumps and rubella) and other vaccines, the final word is the MMR vaccine is safe and rarely causes a severe allergic reaction.

And there is no link between the MMR vaccine and autism spectrum disorders. The association between the two repeatedly has been investigated, and no study has shown results linking the vaccine to the symptoms. In fact, newer research into autism suggests that it’s the result of unusual networking in the fetal brain in the weeks following conception.

What were you saying about our tools being a victim of their own success?

Because the vaccines and immunizations our medical system uses are so effective, the scary, deadly diseases they prevent are now rare. Paralytic polio, babies born with congenital rubella syndrome, tetanus, diphtheria are unknown and forgotten to an entire generation of parents. Because the effects of these diseases were forgotten, the tiny risks for side effects from the vaccines became the focus of concern. Combined with questionable sources in media and on the Internet, fear of vaccines grew. Pockets of underimmunized communities sprung up in cities across the U.S. and provided a foothold for vaccine-preventable diseases, imported from countries with lesser health systems, to resume their toll on a new generation of susceptible children.

But I heard the anti-vaccine community is pretty small and most people follow their pediatricians’ recommendations.

It’s true. Nationally, the number of parents electing to refuse vaccinations is low; however, in some communities, vaccine coverage is less than in war-ravaged Sudan. And this gives the diseases a chance to attack. Measles is so contagious that outbreaks may occur if any more than 5 percent of the community is unvaccinated. Some schools in Oregon and California have reported vaccine rates of 50 percent to 69 percent when anything less than 95 percent vaccinated has great potential for an outbreak.

Vaccines have been so effective that we lost our fear of the diseases they prevented. Amnesia created doubt and hostility towards the utility and need for protection. It is up to parents to protect not only our own children against measles, but in doing so, know that we protect others, too.

For more information:

Joe Kurland, MPH, is a vaccine specialist and infection preventionist at Children’s Hospitals and Clinics of Minnesota.

Introducing new podcast, ‘Children’s Pedcast’

Starting today, we’re happy to share with you our new podcast, “Children’s Pedcast,” a conversation about pediatrics.

subscribe_blog“Children’s Pedcast” — “Pedcast” for short — is a weekly podcast by Children’s Hospitals and Clinics of Minnesota about pediatric health information, issues and concerns, featuring guests made up of experts from Children’s, The Mother Baby Center, Midwest Fetal Care Center and other individuals connected to Children’s, including doctors, nurses, other health care experts, patients and patient families.

The show is conversational and loose with a goal of providing information and an enjoyable, entertaining listener experience.

A new episode is available for download each Monday and can be heard on iTunes, Podbean, StitcherYouTube, Vimeo, all of Children’s social media channels and everywhere podcasts are available.

Taking a proactive approach to preventing sexual abuse

Parents may become concerned about sexual abuse, particularly in younger children, due to behavior. (iStock photo)

Parents may become concerned about sexual abuse, particularly in younger children, due to behavior. (iStock photo)

Alice Swenson, MD

Parents worry about many things that might happen to their children when they’re in the care of others. Sexual abuse often is one of those concerns, so it’s important for parents to be aware of the risk of sexual abuse in young children and to take steps toward prevention.

  1. Teach kids from a young age that their bodies belong to them and that if someone touches them in a way they don’t like, they are allowed to say no. Model this behavior by allowing your child to say no to things like hugs.
  1. Children should be taught that the private parts of their bodies are just that, private, and that only specific people should be allowed to look at or touch those parts. This may include people who are changing diapers or helping with toileting, or, in older, more-independent children, only doctors or nurses who are making sure that their bodies are healthy. Children should know the proper anatomical terms for body parts so if something happens they can communicate to protective adults. Parents should have regular conversations under non-stressful circumstances with their children about who they can talk to if something happens to their bodies that they don’t like, naming specific people such as a parent, teacher, doctor or nurse.
  1. Talking to your children about secrets is important. Explain that families don’t keep secrets from each other and that if someone tells them not to say something to their parents they need to tell right away.

subscribe_blogThe most common way that sexual abuse is discovered is when a child discloses that it has occurred. When this happens, parents should refrain from questioning the child at length. At that point it is crucial that the concerns be reported to local child protection and law enforcement. Trained professionals can then investigate the allegations and help keep children safe.

Most children who are sexually abused have no physical findings on an exam, and exam findings that may cause concern for parents, such as redness of the genital area, are not necessarily associated with sexual abuse.

Parents may become concerned about sexual abuse, particularly in younger children, due to behavior. Sexual development begins in early childhood, and children by age 3 may express interest in their private parts and touch themselves to experience pleasure; this can be normal behavior. Other common sexual behaviors may include expressing interest in other children’s private parts, showing their private parts to others and trying to look at adults’ private parts.

There are, however, sexual behaviors that may be outside the “norm” (trying to put things into their private parts, simulating sex with other people), but these may indicate other problems such as exposure to pornography rather than indicating sexual abuse.

It’s the responsibility of everyone in the community to keep children safe and healthy and protect them from abuse. Children’s Hospitals and Clinics of Minnesota, including the Midwest Children’s Resource Center, is a community partner in this endeavor, offering services such as medical evaluation of child abuse and therapeutic resources.

Alice Swenson, MD, is a child abuse pediatrician at the Midwest Children’s Resource Center, a clinic which is dedicated to the medical evaluation of suspected child abuse and neglect.

Ensuring kids get enough exercise in every season

Games like hide and seek, building forts and even cleaning the house can get kids active and exercising. (iStock photo)

Games like hide and seek, building forts and even cleaning the house can get kids active and exercising. (iStock photo)

Samara Postuma

We all know that kids need exercise, but how much exercise should kids be getting? And how do we ensure they’re getting enough when those too-cold- (or too hot) to-play-outside days come around? Julie Boman, MD, a Children’s pediatrician, has some tips and ideas to share on making sure kids are getting the full 60 minutes a day of the exercise they need.

It’s important to note that while all kids need 60 minutes of exercise, the way that looks for your preschooler and the way that looks for your middle-schooler might be different.

“Younger kids need frequent bursts of activity versus an hour of activity straight, where an older child can get their exercise by being active for an hour,” said Dr. Boman.

So what about those days — those miserably cold days — where it’s deemed unsafe for kids to play outside? Or, as we dream of warmer days, those hot summer days where the heat index is so high it’s dangerously hot for kids to be outside?

subscribe_blogWell, according to Dr. Boman, it’s time to get creative.

Some of the more obvious options to get your kids active would be indoor parks, community centers, YMCAs and parks and recreation centers, most of which will offer special extended hours on the days that outside play might be limited.

“Younger kids just need a space to run,” Dr. Boman said, noting that this is when an unfinished basement can come in handy.

You don’t have to get too crazy to get kids active, though — games like hide and seek, building forts and even cleaning the house can get kids active and exercising.

The only time you’ll hear Dr. Boman suggest video games is when it comes to moving your body versus your thumbs, and there are plenty of games out there that do just that.

“Dancing games on the (Nintendo) Wii (or Wii U) are a good workout, even for adults,” she said.

Another more creative way to get kids active is by looking for active apps or videos such as the IronKids App, which was developed by the American Academy of Pediatrics and is available for iPhone or iPad for $3.99. The app has several different workouts for cardio and core, and kids can follow the app for five-minute bursts of circuit training and weightlifting using household items.

Don’t have a smartphone or tablet? No problem. A simple YouTube search will bring you thousands of workout videos for kids and adults.

“It’s all about exploring ways to keep kids interested,” Dr. Boman said.

What are your tried-and-true ways to keep kids active and exercising all year round?

For more information about Children’s childhood obesity efforts, contact Anna Youngerman at [email protected].

Read Samara Postuma’s blog Simplicity in the Suburbs, and follow her on Twitter.

’Tis the season – for injury?

The increase in toy-related injuries primarily is due to ride-on toys and scooters. (Children's Hospitals and Clinics photo)

The increase in toy-related injuries primarily is due to ride-on toys and scooters. (Children’s Hospitals and Clinics photo)

Dex Tuttle

Toddlers have a seemingly infinite amount of energy. This isn’t news to most of you, but as a new parent my expectations of my daughter’s energy level are always a significant underestimate of the stamina of which she’s capable. On a recent weekend, Quinnlyn and her “Namma” ran more than 50 laps around our kitchen and living room with little or no signs of slowing down.

As a result of this constant source of energy, I often struggle to keep my daughter occupied. My rationale is that she’s less likely to get into trouble if she’s busy with some toys or an activity; however, that may not be the case.

Q4_mighty_buttonA new study found that, nationally, toy-related injuries are sending another child to the emergency room every three minutes.

This increase in toy-related injuries primarily is due to ride-on toys and scooters. Nearly half of the kids injured by toys are hurt falling off of them, and of those, many of them break bones.

REPORT: Avoiding dangerous toys

Now may be a time of year that some of us are thinking about getting new toys for the little ones. Whether they play with new toys or hand-me-downs, it’s not likely we’ll ever totally protect our kids from injury, but this serves as a good reminder:

  • Always read the instructions and follow manufacturer guidelines on age and appropriate use.
  • Define a safe space for kids to use these high-risk toys, and always make rules about staying away from other hazards such as traffic, obstacles and other people.
  • It’s never too early to get kids in the habit of wearing helmets. If they’re on wheels, their helmets should be on – indoors or out.
  • Make sure the toys are in good repair and check the Consumer Product Safety Commission for recalls.

Dex Tuttle is the injury prevention program director at Children’s Hospitals and Clinics of Minnesota.

Flu vaccination more important than ever

fluheader1121

The flu vaccination is the best defense against what can be a serious infection at any age.

The flu vaccination is the best defense against what can be a serious infection at any age.

Q4_mighty_buttonBy Patsy Stinchfield, PNP

Parents — heads up!

If you haven’t received your or your children’s influenza vaccine, now is the time. The flu has begun to circulate in Minnesota and is a strain (A-H3N2) that is known to cause more-severe illness in all ages, but especially in the very young and the very old. One child in Minnesota already has died this year from this usual, seasonal strain of influenza.

It takes about two weeks to make protective antibodies, so get in now for your shot or nasal mist before gathering with sick friends and relatives.

The flu vaccine contains A-H3N2, but the virus circulating now has changed a bit, making the vaccine not a perfect match. However, it still is critical to get a flu vaccine because there is cross-protection that will help prevent kids from ending up in the hospital or worse yet, the intensive care unit.

It’s a busy time for everyone, but right now there is nothing more important than protecting yourself (especially if you have a baby younger than 6 months who is too young to be immunized), and your children. The flu vaccine is available at most clinics and retail stores, but please call and make arrangements.

Have a happy and healthy holiday!

Patsy Stinchfield, PNP, is the director of infectious disease and prevention at the Children’s Immunization Project at Children’s Hospitals and Clinics of Minnesota.

Andrew’s Journey: A life of great purpose and meaning

By Nicole Schmidt

Excited to wear my cute boots for a post-Christmas brunch at my sister’s, I needed to use the bathroom one more time before we headed out. Let’s just say when I sat down I got more than I had expected.

(Photos courtesy of Nicole Schmidt)

Nicole and Paul Schmidt are the parents of Andrew Schmidt. (Photos courtesy of Nicole Schmidt)

My son, Andrew Jacob Schmidt, entered the world three weeks early and changed our lives forever. As a parent, you never forget the first time you look at your child. When I first locked eyes with Andrew, I knew something was not right but couldn’t put my finger on it. The phrase “coarse facial features” was used by our pediatrician, and we were encouraged to be evaluated by a geneticist.

Andrew Schmidt

Andrew visited Children’s when he was 4 months old.

When Andrew was 4 months old, we visited Children’s Hospitals and Clinics of Minnesota. With thick stacks of paperwork in hand, the questioning and assessment of our son and his coarse facial features began. We worked with Dr. Nancy Medelsohn and the genetic counselor that day and over the next few months. After a multitude of tests and referrals, they concluded that that Andrew had Beckwith-Wiedemann syndrome. This rare disorder is characterized by pre/postnatal overgrowth, neonatal hypoglycemia, congenital malformations and a higher risk for tumors and cancer.

Andrew Schmidt

Andrew initially was diagnosed with Beckwith-Wiedemann syndrome shortly after birth.

Over the next few years, Andrew continued to struggle. He was not meeting basic developmental milestones and was suffering from low-muscle-tone seizures called myoclonic jerks and was diagnosed as deaf and blind. Oddly enough, none of these symptoms were associated with Beckwith-Wiedemann syndrome. There were frequent phone calls from Dr. Mendelsohn’s office, most often from herself to guide us to the next course of action, set up early intervention, refer us to other specialists or relay lab work or ultrasound findings.

Q4_mighty_buttonAfter attending a Beckwith-Wiedmann syndrome medical conference and sharing Andrew’s case with several people including Dr. Beckwith himself, my husband, Paul, and I decided to reach out to Andrew’s superstar, Dr. Mendelsohn. We shared what we had learned and she reopened the case. Soon after, she recommended that we test for an extremely rare genetic disorder called Pallister-Killian syndrome.

I was certain the test would prove negative, until I looked up this syndrome the night before the test. I couldn’t believe my eyes; it was like Andrew was plastered all over the website: broadened eyes, turned-up nose, myoclonic jerks, severe cognitive delays, deafness and blindness. Andrew met almost every characteristic. We weren’t surprised when Dr. Mendelsohn called to confirm Andrew’s diagnosis. Pallister-Killian syndrome occurs for no known reason. With only 300 diagnosed worldwide, Andrew was the first diagnosis in Minnesota.

Andrew was diagnosed with Pallister-Killian syndrome.

Andrew was diagnosed with Pallister-Killian syndrome, an extremely rare genetic disorder.

We finally had an answer. We had milestones to look forward to and compare. For the first time, we were looking at our son with all of the things he had accomplished versus all the things he hadn’t. We had a diagnosis. We had a doctor who listened to me, a doctor who trusted me, and I trusted her. Mutual respect for knowledge and skill, her wisdom from education and practice combined with my 24/7 observations, commitment and love for my child made us a great team, Team Andrew.

pksWith this diagnosis, my grieving and healing had already begun. I started forgiving myself for a syndrome over which I had no control. I started taking some deep breaths and learned we were in a marathon. There were no quick fixes, no miracle drugs, no special cures.

As we approach Andrew’s 10th birthday, he can walk with a walker and says “mama” and “more”; our dreams obviously have changed, but the journey to help him become part of this world now is supported with the resources we have gathered along the way.

Andrew

Andrew

Without the open mind of one doctor, who knows where we would be today?

As far as the cute boots? I still have them. My marathon might not be running in Duluth, but it’s a marathon that requires a unique set of training. It is a life most fear and one that I wouldn’t wish on any of you. But it’s a life with great purpose and meaning and sweet silver linings along the way.