In the third episode of Journeys in Healthcare from a Youth Perspective, 34 year old Cody shares about his experience when he was younger dealing with cerebral palsy and epilepsy. He experienced seizures most of his life, and was impacted by them daily. Due to his special healthcare needs, Cody lives an unpredictable life. However, he doesn’t let that stop him. He is involved with his church, has an active social life, works, and lives a a full life to the best of his ability. Instead of being slowed down by his healthcare needs, Cody learned to communicate, self-advocate, and work past any barriers that come his way.
Washington State is experiencing a Mumps outbreak.
Here are some important facts about Mumps, some preventative measures, what to do if a family member gets Mumps and the counties that are hardest hit.
The following information is from the National Foundation for Infectious Diseases:
What is Mumps?
Mumps is an acute viral disease that is spread from person to person by coughing or sneezing. Some people may have no symptoms or very mild symptoms but they can still pass the virus on to others.
The symptoms of mumps include a low grade fever and swelling or tenderness of one or more of the salivary glands in the cheeks and under the jaw. In males who have gone through puberty, up to 30 percent may experience testicular pain and swelling.
Symptoms usually appear between 12 and 25 days after a person has been exposed to the mumps virus. As many as 30 to 40 percent of infected people will not have symptoms and nearly 50 percent will have non-specific or mostly respiratory symptoms, with or without infection in the salivary glands.
There is a vaccine to protect against mumps. The vaccine is given as part of a combination vaccine, called the MMR vaccine that protects against measles, mumps, and rubella. – See more at: http://www.adultvaccination.org/vpd/mumps/facts.html#sthash.L828zqLL.dpuf
There were 756 confirmed cases as of April 14th, 2017 in 13 counties and while many of those counties are in the single digits, Spokane, King, Pierce, Grant, and Snohomish have experienced double and triple digit numbers. Spokane County alone has had 306 cases. King county has had 276 cases and have a significant number of these cases on college campuses where good personal hygiene is often not followed and there are lots of people together in small living quarters.
Here are some recommendations made by the State Department of Health:
What can you do to prevent the spread of mumps?
- The best protection against mumps is the MMR vaccine (combination MMR and varicella), which protects against measles, mumps, and rubella viruses.
- If you don’t think you ever had MMR vaccine, contact your healthcare provider for immunizations or a blood test as soon as possible.
- If you don’t have a healthcare provider, call your local health department or the Family Health Hotline at 1-800-322-2588.
- If you think you have been exposed to mumps, contact your healthcare provider for advice.
- If you become ill after a possible exposure to mumps:
- Contact your healthcare provider and ask to be evaluated for possible mumps.
- Protect other people – Stay away from other people to avoid exposing them to mumps.
Mumps can be a serious illness, especially for adults so it is important to pay attention if you think you may have been exposed. Here are some links to give you more information.
Without a doubt, one of the most stressful situations you can face as a parent is the hospitalization of your child.
Whether it is a planned stay, like a surgery, or an unplanned event, parents are bombarded with a huge number of shifts in their day-to-day life and priorities. Parents are also expected to step in and provide a lot of the care a child receives in the hospital once they are back home and that can be extremely overwhelming. While the purpose of this article is for families with a child who is medically fragile or has a life-threatening diagnosis, it is also meant to offer ideas for the unexpected and planned hospitalizations that can occur in all our families. Hospitalization and Emergency Room (ER) visits for many families with a child who is medically fragile or has life-threatening diagnosis is an ever-present possibility. The hope is to provide some tool kit examples and some ideas to ease the transition back home.
As a parent who has spent a lot of time in ERs, Intensive care units, and the medical floor during hospital stays, I have found that I was better prepared for what was going on and the transition back home when I asked questions and shared what home was like with the doctors, nurses, and therapists. I also found that the hospital social workers were my best friends when it came to asking about support for me as a parent. Even before you talk with the discharge planner check in with the social workers. They often have information about support groups, outside therapists/home help, vouchers, and financial supports that you don’t have the time to think about while your child is hospitalized.
Building relationships and the supports for you with the staff caring for your child can help ease some of the overwhelming confusion. Especially when there is an extended medical emergency or complex surgery with a long recovery. Keep a small notebook to write down and track what doctors and nurses do, and record the answers to your questions when you ask them. If you have a smart phone, there are multiple apps for this on both iPhone and android platforms. Most important of all is making sure you take time for you and self-care. This is often the hardest part and frequently we know it’s what we need to do and focus on other pressing priorities. Remember, when you take time to renew it helps you be there for your family. While your child is hospitalized, the nurses are there to take care of them, so find ways to re-charge. Take breaks and find quiet time for yourself because once you get back home you are often the nurse and parent.
Vital links for your family and your child:
This first link is from the Agency for Healthcare Research and Quality (AHRQ) and takes you to a website that gives some good basic information and links to checklists. After clicking on the link below this text, go to the middle of the page. There will be a link to the “Be Prepared to Go Home Checklist and Booklet” is a good general tool to use. https://www.ahrq.gov/professionals/systems/hospital/engagingfamilies/strategy4/index.html
The second link for a Neonatal Intensive Care Unit (NICU) babies or Pediatric Intensive Care Unit (PICU) babies and is really targeted to supporting parents of infants. https://www.ahrq.gov/professionals/systems/hospital/nicu_toolkit/nicu-packet.html
The last link is a great way for families of children with complex medical needs to prepare ahead of time just in case. This link is for the Family Voices collaborative care notebook template that has places for all of the information that goes with the care of your child. This tool can be used to provide information to the hospital and ER. Some families have used the child sheets or the emergency information sheets as a one pager to take with them to the ER or for extended hospitalization. This sheet provides the multiple doctors and staff that you see with consistent accurate information. There are also schedules that a child might need in their care and they can be used to record care needs in the home. http://www.fv-ncfpp.org/files/5813/0721/3621/Care_Notebook_-_entry_enabled1_reduced.pdf
These tools have been a great help in supporting my family with multiple hospitalizations and it is my hope they will be useful for you too!
What is Developmental Screening?
Developmental screening is the practice of systematically looking for and monitoring signs that a young child may be delayed in one or more areas of development. Screening is not meant to establish a diagnosis for the child, but rather to help professionals and families determine whether more in-depth assessment is the next step. By using a high-quality screening tool, professionals can screen children for delays accurately and cost-effectively.
Think about your child’s first months. The medical professionals set up regular “Well-child” appointments just to monitor how your child is doing. These “Well-child” visits allow doctors and nurses to have regular contact with children to keep track of the child’s health and development through periodic developmental screening. Developmental screening is a simple process that can have both informal and formal assessments. When using a tool that is more formal in nature, the short test can tell if a child is learning basic skills when he or she should, or if there are delays. Developmental screening can be done by other professionals in health care, community, or school settings.
We have heard many times over the years that a child’s greatest window for development is in the first five years of life. Eighty-five percent of the brain’s development occurs before age three, making the first years of life critical to a child’s future success. The research shows that early intervention greatly improves a child’s developmental and social skills. Early intervention services help children from birth through 3 years of ages. Services usually include the support of an early educator who works with the family, as well as therapy (if identified as a need) to help the child talk, walk, and interact with others.
It’s not uncommon for parents to become concerned when their little one doesn’t seem to be developing within the normal schedule of “baby” milestones. You may worry that he hasn’t rolled over yet, or that he isn’t doing what the neighbor’s child, who is about the same age is doing. There may be concerns about your baby sitting up or beginning to verbalize words and sounds.
While it’s true that children develop differently, at their own pace, and that the range of what’s “normal” development is quite broad, it’s hard not to worry and wonder. If you think that your child is not developing at the same pace or in the same way as most children his or her age, it is often a good idea to talk to your child’s pediatrician. Explain your concerns. Tell the doctor what you have observed with your child. The doctor or other professionals might ask you some questions they may also talk and play with your child to see how he or she plays, learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.
You can also get in touch with your community’s lead agency for birth-to-three services, and ask for an evaluation to see if there are possible delays. Based on referrals from the Doctor and the evaluation provided by the early intervention team, your child may be eligible for early intervention services, which will be developed with you and will address your child’s special needs.
Screening is a simple process that can identify infants and young children who may be at risk for health, developmental, or social/emotional problems. It identifies children who may need a health assessment, diagnostic assessment, or educational evaluation. “Screening” means using a standardized instrument. This could include a parent questionnaire, observational process, or other form of measurement that has been validated by research to learn more about the child’s development. Using a standardized instrument is much more effective for identifying real concerns or delays than just using professional judgment or informal questions about the child’s development.
The screening process provides an opportunity for young children and their families to access a wide variety of services and early childhood programs. It also supports the parents’ understanding of their child’s health, development, and learning.
The developmental screening and evaluations can lead to the involvement of a Family Resource Coordinator who will walk with the family through those first three years. They do a family needs assessment, if the family wishes to have one done. This helps identify areas the needs and priorities of the child’s family. Family-directed services are meant to help family members understand the special needs of their child and how to enhance the child’s development.
The need to provide early intervention is significant. Many children with developmental delays are not being identified as early as possible. This can result in these children waiting to get the help they need to do well in social and educational settings until they are in a school or pre-school setting. Research has shown that in nearly one in six Washington kids has a developmental delay, but only 30% of these children are identified before starting kindergarten, when early support services are most effective. Additionally, research has also identified that in the United States, about 13% of children 3 to 17 years of age have developmental or behavioral disabilities. These can include autism, intellectual disabilities, and attention-deficit/hyperactivity disorder. Additionally, there are children who have delays in language, social skills, or other areas that affect school readiness. This same research found that many children with developmental disabilities weren’t identified before age 10. These types of delays have significant implications since by that age there are significant delays that might have been addressed earlier and provided opportunities for services and support that was missed.
Because of the rapid growth in a child’s first three years of life, early support and monitoring of child development is essential for these children to reach their full academic potential as well as social and personal success. In all cases, kids will experience greater success academically, socially, and personally if delays are caught early and kids and families get the support they need. Free developmental screening using the Ages and Stages Questionnaire-3 screening tool is one of the best ways to get more awareness of what can help your child. In addition to the Ages and Stages survey a terrific tool and support network has been established called “Within Reach”. The “WithinReach” website is committed to supporting optimal child development of all Washington families. Through the “WithinReach” Family Health Hotlineand Child Development program, families can access free developmental screening, connections to early learning and family support and referrals to early intervention for developmental delays.
If you would like a free developmental screening for your child or have concerns about your child’s development, it is as easy as calling their Family Health Hotline (800) 322-2588 or visiting their website at www.ParentHelp123.org.
Remember that as important as Developmental screening is as a part of early intervention, can go also be important in assuring that the needs of children of older ages also find success and resources. Developmental screening for older youth can include areas of the individual’s development in mental health, social and emotional needs, and communication needs, just to name a few. Developmental screening will help assure that the needs of the individual whether an infant or an older child, can be met, and how those needs can be met. As parents and family members we have a responsibility to help our children thrive and developmental screening can help us know which path to follow to make that happen.
Resources for this article:
A medical home is a partnership between you and your child’s doctor that makes sure your child is getting the best possible care.
It is not an actual place or building you can go to. The word home means that you have a “home base” for your child’s health care needs. The medical home concept has been growing more and more in the last few years and creates a coordination “team” around the medical needs of your child.
The place where you usually take your child for health care can be your child’s medical home. Medical homes don’t happen right away and don’t always look the same. No matter who provides coordination a medical home provides support for your child and help for you as the parent or guardian in the coordination of care. If you would like to work on creating a medical home for your child often the first place to start is with your child’s primary care physician to see if they are familiar with how to coordinate care around your child. Some families have medical homes built through a specialist’s office, some a primary care pediatrician, and others who are on Medicaid can have that coordination through a managed care patient care specialist.
When choosing a provider to help you create a medical home here are some tips to consider:
- Their willingness to negotiate and respect your input and decisions
- That your child’s best interest is at the heart of their care and that the family’s dynamics are taken into consideration when a care plan is put into place
- Your provider has at least some experience with your child’s condition. The relationship of the provider with your child is the most important element.
- Open communication so that you and your doctor can make decisions together and that you are recognized as the expert on your own child’s care
It is important that the provider you consider also work well with the other members of your child’s care team and that they are willing to communicate and share information. You and your child’s providers should make decisions together calmly and information should be shared with all members of the team. A willingness to work with supports inside and outside the medical profession is also something to think about. A physician that is willing to work with a school and advocate for the child’s needs in a school environment goes a long way in setting up a strong IEP or 504 education plan.
When working with a provider understand that respect is a two-way street. Working with complex needs can be frustrating and scary and just because someone is a physician doesn’t mean they have all the answers. Asking questions and letting your provider know that you don’t understand their decision or don’t agree with their decision can be done respectfully and can help to build a strong line of communication if it is done with respect. You are the driver of your team so it helps to come from a place of respect.
It also helps to respect the time utilized in appointments as well. Be sure and let the office know ahead of time if you need more time in an appointment and write out your questions and concerns ahead of time. If you have a teenager or young adult start having them write out their questions and needs as well so that they become a part of the team in managing their own care.
I know it seems like a lot of work but there are a great deal of reasons why a medical home is of benefit. Some of these reasons include:
- Help in the early identification of special health care needs
- Provides ongoing primary care
- Ongoing coordination with a broad range of other specialty services
- Your child’s doctor can help you find more medical services for your child
- More cost effective
- Your doctor will get to know your child’s needs better
- Your child will get better healthcare because you and your doctor have a partnership
- Information is shared between you and your child’s doctors
- You and your child’s providers can build a relationship
- Fewer visits to the emergency room and hospital when problems are found more quickly
- Lower long-term health care costs
Family can be a constant in many children’s lives. They know the history of the child and they will be there in the future. Bringing a trusted medical provider into that circle to help with the coordination and care of your child frees you, as a family, to look beyond the need to juggle the many complex issues of caring for a child with special healthcare needs. A medical home can spread the burden of coordination and decision making between many hands and can keep everyone on the same page. This alone can be worth the extra work that you may face in beginning.
There are some great web resources around establishing a medical home both at national and state sites and you can access them below.
Medical Homes Checklist
- You are valued and acknowledged as the expert on your child.
- You are the central member of your child’s health care team.
- There is respect and trust between you and your child’s Doctor.
- Your culture and religion are valued.
- Your doctor shows effort and interest in learning about your child’s healthcare and other needs
- Your child receives his or her shots, well child visits and urgent care (when needed).
- You receive help and support when finding specialty care and community services.
- Your child’s doctor provides helpful information to other people involved in your child’s healthcare and helps you manage your child’s care.
- If your child has special healthcare need you feel supported.
- You are given helpful information to help you learn about your child’s health care concerns
- Your doctor helps you understand the choices for your child’s treatment.