Tips from The National Children’s Cancer Society: Keeping Siblings Happy and Engaged During Tough Times

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This is a guest post written by The National Children’s Cancer Society (NCCS). The NCCS is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship.

When a family is going through a tough time, such as when a child is sick, a large amount of attention is focused on that child. This family focus can leave their healthy siblings feeling angry, guilty, isolated, sad and anxious.

However, research from the Journal of Pediatric Oncology reveals that when children possess a positive personal outlook on life, they’re likely to remain optimistic and have an easier time coping. Parents can help build this positivity through hands-on activities that give their healthy children a chance to process feelings and connect with their families during an emotional time.

With more than 30 years of experience serving nearly 43,000 children facing childhood cancer, the NCCS would like to share age-specific tips and activities to help keep healthy siblings happy and engaged during trying times. While these tips and activities may be designed for families with children that have cancer, many can be applied to families facing other hardships such as a death in the family or parental illness.

Birth to 3 years old:

  • Technology can help you feel connected while apart, use Facetime or record stories and lullabies to soothe the baby while he/she is with a babysitter or in a new environment.
  • Since transitions can take some time, it’s best not to attempt toilet training or major developmental tasks until there is a consistent routine in place.
  • Suggested activity:
    • Play with playdough – Kneading dough is an opportunity to talk while playing, work out tensions and have fun with the baby. Scented playdough can enhance relaxation.

3-5 years old:

  • Even if toddlers revert to behaviors they have grown out of, including having accidents or throwing tantrums, continue implementing standards and discipline as before to provide a sense of security and routine.
  • Give concise explanations of what their sibling or family member is going through to allow them to feel informed and connected to what’s going on.
  • Suggested activity:
    • Pop cancer bubbles – Have children blow bubbles and pretend to be a chemo shark or radiation monster who pops bubbles to kill cancer cells. This will give them relief while developing a small understanding of treatments.

6-12 years old:

  • If possible, let children decide for themselves who will be helping care for them when parents are traveling or absent overnight.
  • Explain that all feelings experienced are okay and reassure them that even their tough feelings are alright too.
  • Suggested activity:
    • Make colorful paper chains – Help children write feeling words on strips of construction paper and discuss what they mean, such as love, life, hope and courage. Let kids decide what order they want their strips in and where they want to hang their finished product.

13-18 years old:

  • Arrange a tour of the hospital or clinic with their brother/sister and encourage them to ask questions of the medical team.
  • Give teens abundant permission to talk about themselves, as they’re probably receiving a lot of questions about their siblings.
  • Suggested activity:
    • Trade something special – When away or busy, trade something personal or special with each other. This will help teens feel supported and connected to their family members through hard times.

About The National Children’s Cancer Society (NCCS)

The National Children’s Cancer Society (NCCS), headquartered in St. Louis, Missouri, is a not-for-profit organization providing support to families making their way through the daunting world of childhood cancer and survivorship. With over 30 years of experience serving nearly 43,000 children, the NCCS is able to take a “no matter what” approach to help families stay strong, stay positive and stay together. The NCCS has been recognized as a Better Business Bureau Accredited Charity and earned a GuideStar Platinum Seal of Transparency. For more information call 314-241-1600, visit theNCCS.org, or on Facebook and Twitter.

 

6 Early Childhood Dental Health Issues and How to Deal with Them

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Guest Blogger, Shen Chao

There are a lot of problems that affect your child’s dental health such as early loss of teeth, lip sucking, tongue thrusting, thumb sucking and tooth decay. Maintaining your child’s baby teeth in good health and proper alignment is important to your child’s overall health in the long term.

Here are 6 early dental health issues that children face and how to prevent them:

  1. Baby Bottle Tooth Decay

What and How: Baby tooth decay is also known as early childhood caries which occurs due to your baby’s teeth staying in prolonged contact with sugary drinks like sugary water, formula, milk and fruit juices.

The sugar is broken down in your mouth which produces a byproduct of acid which wears down the minerals found in your tooth enamel which further leads to tooth decay.

Solution: You can prevent tooth decay by:

  1. Give your baby a pacifier or a bottle filled with plain water instead of milk or sugary drinks.
  2. Don’t let your baby’s pacifier come into contact with any sugary liquid.
  3. Don’t ever let your baby sleep with a bottle full of any sugary liquid. Only give them a small amount of water or a pacifier instead.
  4. Remove your breast from your baby’s mouth after he/she falls asleep.
  5. Avoid adding sugar to your baby’s food.
  6. Wipe your baby’s teeth and gums with a gauze or wet cloth after feeding.
  7. Consult your dentist about your child’s fluoride requirements. You may have to fluoridate your water if necessary.
  8. Teach your baby to start drinking from a cup by their first birthday at the earliest. Moving on to a sippy cup reduces your child’s teeth’s exposure to sugars.

 

  1. Thumb Sucking

What and How: It’s very difficult to find an infant that doesn’t suck on something, whether it be their pacifier, their fingers or their toys. Sucking on an object just when your baby’s teeth are erupting can throw your baby’s teeth out of alignment, causing them to have protruding or crooked teeth as well as leading to overbites. It can also teach your children to eat incorrectly and cause speech problems.

Solution: Thumb sucking isn’t such a big problem until your child’s permanent teeth begin erupting. Once your child’s adult teeth start erupting, you should encourage your child to stop sucking his thumb. This can be a bit difficult as sucking your thumb is generally a coping and safety mechanism that can have the opposite of its intended effect, pushing your child to suck his thumb even more.

Try and praise your child for refraining from sucking his thumb and follow it up with a reward. You can then slowly begin to increase the time that your child has to avoid sucking his/her thumb to get the reward.

  1. Lip Sucking and Tongue Thrusting

What and How: Tongue thrusting is the habit of sealing the mouth for swallowing by pushing the top of the tongue forward against the lips. Tongue thrusting puts extra pressure against the front teeth, which can push them out of alignment, this leads to interference with proper speech as well as creating an overbite.

Lip sucking also involves repeatedly holding your lower lip beneath the upper front teeth. Sucking the lower lip can occur on its own or in combination with thumb sucking. This practice leads to an overbite and the same types of tongue thrusting and thumb sucking.

Solution: You can stop the habit with the same technique that is required for stopping thumb sucking – positive reinforcement.

  1. Over Retained Baby Teeth

What and How: A baby tooth that is still in place with a permanent tooth trying to erupt underneath is usually termed as an “over-retained” tooth, which requires its removal. The presence of still having primary teeth in adults and teenagers can be a potential problem such as impacted permanent teeth or congenitally missing teeth.

Solution: The earlier you get diagnosed the better the chances of healing. Regular dental appointments allow your dentist to actively monitor your child’s oral growth and development.

  1. Orthodontic Problems and Teeth Grinding

What and How: A bite that does not meet properly is known as a malocclusion. It can either be acquired or inherited. Certain causes of malocclusion are misaligned jaws, crowded teeth, extra or even missing teeth. Accidents or developmental issues such as thumb or finger sucking for extended periods can cause malocclusions.

Solution: TMJ treatment such as occlusal splint therapy and night guards can be worn to prevent your child from grinding his teeth.

  1. Early Tooth Loss 

What and How: If your child loses their baby teeth before their permanent teeth erupt, it is usually caused by lack of jaw space, injury or tooth decay. If the baby teeth are left untreated, the rest of the teeth can crowd into the space that is intended for the permanent tooth.

Solution: To improve your child’s dental health, you need to first prevent your child from suffering from tooth decay for which you need to set an oral hygiene routine from a young age if you want your child to avoid tooth loss. Nutrition plays a large role in our oral health so try to feed your children sugar-free foods as much as possible. If your child’s tooth happens to fall out early, then your dentist will suggest the use of a space maintainer, a metal or plastic application that is designed to hold the space left by the missing teeth till the permanent tooth erupts.

Author Bio:

Shen Chao is part of Dr. Joshua Hong’s Dental Clinic in Goodyear, AZ. While working for the dental clinic, he’s gained first hand experiences into the questions and concerns that dental patients have. He has been writing to inform people about various dental topics to help his readers improve their oral health. When he’s not working, you can find him on a hiking trail with his dog or having a Sunday cook-out with friends.

 

Coping with a Congenital Heart Defect: The First Year

 

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Guest Blogger, Lauren Backe; Mother and Advocate

Various media outlets caught wind of our Jack winning the national Starlight Children’s Foundation’s ‘Design a Gown’ contest— where people across the country were encouraged to design a creative hospital gown for children facing challenges in the hospital. He entered the contest for his sister, Everly, who has a Congenital Heart Defect (CHD). Upon his win, 30,000 comfortable, imaginative hospital gowns will be made and distributed in the likeness of his heartfelt creation: hearts and lots of printed glitter! Since winning, numerous people have approached my husband and I wanting to learn more about CHDs and Everly’s journey with it thus far.

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I didn’t know much about CHD until July 2017. I didn’t think I knew many babies who had it (turns out, I do know a few: an old neighbor’s son, a classmate of Jack’s brother, a friend of a friend’s daughter….) CHD is the most common birth defect. I asked LOTS of specialists (everyone we saw in July and August) what could’ve caused Everly’s CHD. They all assured me that I didn’t do anything to have caused it. Everly’s genetic testing came back clean. The heart starts as a tube and grows and branches off from there. From all I’ve learned about fetal heart development- it seems to me- it’s just a complete miracle that so many hearts form “normally.”

Everly was born in August. We found out a few months before birth that she had a CHD that would need to be repaired before she left the hospital. I remember the day vividly. After an ultrasound at around 30 weeks, my local OB said the heart looked a little off and we should get an ECHO to rule anything out. Not expecting to hear anything “bad” at the ECHO, I went by myself. I knew the news wasn’t great when the cardiologist said to me “So you came by yourself, huh?” I left the appointment with pictures drawn of our unborn baby’s heart compared to a “normal” heart and the cardiologist offered to call my husband that evening.

After learning her diagnosis, we set up to find the best surgeon for our girl. We are lucky that there are several “3 Star” rated heart hospitals near by. One particular surgeon at one of these hospitals came very highly recommended by just about anyone you asked. After meeting with him, we knew he was the one!

We met with an Maternal Fetal Medicine Specialist (high risk OB) and set up an induction day so that all of the right people for Everly would be ready for her when she was born. A few minutes after birth, the NICU swept her away to get her lines set up to receive  medication. They also performed an ECHO on her to get more pictures of her heart outside of my belly.

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CHD is 1 in 100 births.

Everly’s CHD is IAA/VSD (interrupted aortic arch and ventricular septal defect).

IAA is 2 in 100,000. IAA is about 1% of CHDs.  

Everly had the Norwood surgery to repair her IAA at 3 days old. The Norwood surgery for the IAA defect is not commonly needed. We had hoped that Everly would have ONLY ONE open heart/bypass surgery right after birth that would fix the IAA and the VSD. Unfortunately, her heart did not grow as expected between the fetal ECHO and birth, and she was not able to have that surgery (which is a less risky open heart/bypass surgery- STAT 4). STAT levels range from 1 to 5 with 5 being the most complex/dangerous.

Instead, she needed to have a very complex surgery (STAT 5 level). The Norwood corrected the IAA, but not the VSD (some parts of her heart needed time to grow before repairing the VSD). She will need to have multiple open heart/bypass surgeries in her life.

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In October, Everly was briefly hospitalized for a virus. Thankfully, we were able to take care of her the majority of the time at home with home oxygen tanks/machines.

She had a “cath” (cardiac catheter) in November 2017- this looked at the functioning of her heart to determine next steps- it’s a surgery with intubation and anesthesia but we were only there one night- it is not “open heart”. In the cath, they were able to do some “ballooning” to help buy a little bit of time.

In December 2017, Everly had an additional shunt put in (STAT 4) because she was not yet big enough for the “full repair”- the Rastelli procedure. She now has two shunts- one from the Norwood and then the additional one put in, in December.

In April 2018, Everly was briefly hospitalized for a virus- she needed some extra IV fluids to make sure the 2 shunts in her heart didn’t risk clotting.

The Rastelli surgery will be next. This will put a conduit in- tube and valve and fix the VSD.  She needs to be big enough for the Rastelli (STAT 3). The conduit is bigger than a shunt so there needs to be enough space in her chest/heart for this conduit to fit. After the Rastelli, we will hopefully have about 3-5 years until the next open heart surgery.

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Approximately every 3-5 years, she will need to have the conduit replaced. When she is big enough for an adult size conduit, the valve in the tube can be replaced through her leg (vs. an open heart surgery). However, the adult size conduit will not last forever and she will need to have the conduit replaced (more open heart surgery).  It is too hard to predict how many valve and/or conduit replacements she will need in her lifetime.

Everly is very medically fragile currently since her heart functions like it only has one chamber (not two like a normal heart), but will hopefully be considerably stronger after the Rastelli surgery. The time between the Norwood and the Rastelli is called the “interstage”- Everly is part of a “Norwood Clinic” where we have a lot of specialists for just a few patients because of the extreme fragile-ness. (If Everly had had the one time repair we initially had hoped for, we wouldn’t be part of this “group”). We hadn’t planned for this (the Norwood surgery) so we didn’t know the specialists. BUT we were so lucky to be handed this amazing team. They are truly amazing and have helped us so much in these very critical months. We will continue to be part of this “Norwood Clinic” until the Rastelli.

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So in short…. What have we learned over the past 10ish months?

Choose joy each day, find joy in small things, celebrate all victories- even small ones, take things one day at a time, try not to take time with family and friends for granted, try to live in the moment, try not to sweat the small stuff, breathe…. This little girl and her strength and Jack’s ability to adapt to all the changes has taught us so much in 9 short months. Everyday, we are grateful for both of them. Perspective is everything.

Follow Jack and Everly on Facebook.

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