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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Heard of Chronic Fatigue Syndrome or Myalgic Encephalomyelitis? This long-term illness causes extreme fatigue and sleep programs but is often called an “invisible” disease because usually the only thing noticeable is the person’s “pallor.” ME/CFS affects an estimated 836,000 to 2.5 million individuals in the United States (including children), although most have not been officially diagnosed. On “bad” days, those with the illness may feel so weak and exhausted that they can’t go to doctor appointments, for example, or go to or function at school.

Find out more about ME/CFS in this new fact sheet from the Centers for Disease Control and Prevention (CDC). Three versions are available: one for parents and guardians, another for healthcare professionals, and a third for education professionals.

Health Care and the Medical Home

A medical home is the kind of primary health care we all want and deserve. A medical home is not a place—it is the way care is provided to children/youth and their families. If you have a child with health care needs, or you work with families that do, visiting the National Center for Medical Home Implementation will lead you to a great many resources, including: 1-page fact sheets, pages and forms you can use to “build your care” notebook, and interactive maps where you can find out more about medical home initiatives going on in your state and points of contact.

Want to connect with all this and more? Let us tell you more about the National Center here.

Resources to Help Children in the Wake of a School Shooting

(2018, February) | Useful to Parent Centers, schools, community members, and families after a school shooting. This resource comes from Child Trends and provides insightful guidance on how to help children after a school shooting or similar traumatic and violent event. Child Trends begins by saying: As adults struggle with their own reactions to the […]

Related Services

Current as of November 2017 This info in Spanish | Esta información en español   The IEP must contain a statement of the special education and related services and supplementary aids and services to be provided to the child, or on behalf of the child. We’ve split up the discussion of each of these important […]

Helping Children with Congenital Cytomegalovirus (CMV)

When a baby is born with cytomegalovirus (CMV) infection, it is called congenital CMV infection. About 1 out of every 200 babies are born with congenital CMV infection. Women can pass CMV to their baby during pregnancy.

According to the Centers for Disease Control and Prevention (CDC), only about 1 in 5 babies with congenital CMV infection will be sick from the virus or will have long-term health problems, but those problems can include hearing loss, vision loss, intellectual disability, muscular weakness, and even seizures.

Find out more about the two-article CDC resource (available in English and Spanish) and connect with its website devoted to CMV.

Roadmap to Behavioral Health: A Guide to Using Mental Health and Substance Use Disorder Services

The Centers for Medicare & Medicaid Services (CMS) and SAMHSA just released a publication entitled Roadmap to Behavioral Health: A Guide to Using Mental Health and Substance Use Disorder Services. The Roadmap is designed to serve as a behavioral health resource for consumers and offers important information about mental health and substance use disorder services. It includes definitions of behavioral health terms and guidance on how to find a behavioral health services provider, receive treatment, and obtain follow-up care.

There’s also a companion guide, Roadmap to Better Care and a Healthier You, which explains what health coverage is and how to use it to get primary care and preventive services. The companion roadmap is available in English, Arabic, Russian, Chinese, Spanish, Haitian-Creole, Vietnamese, and Korean. There is also a Tribal version.

Connect with all of these resources here.

Involving Your Child in the Decision-Making Process

Shared Decision-Making and Children with Disabilities: Pathways to Consensus, a clinical report published by the American Academy of Pediatrics (AAP), states that children, when cognitively able, should be involved in decisions about their care. Too often this is mistaken by parents and professionals to only mean “the big decisions,” but research shows that inclusion in smaller decisions as well can have a significant impact over time.

Presenting children with information—appropriate for their developmental age—can help in their understanding of their condition and treatments, reduce fear, and enhance self-confidence.

This article shares multiple tips for parents to ensure that their child is appropriately informed and involved. Read the article here.

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