Long Covid Foster Kids : An Immediate Crisis
Long Covid In Foster Kids Summarized
As the prevalence of long covid increases with wave after wave of infections, the number of children with long covid is becoming a massive crisis for families and especially those in foster care.
Approximately 1 in 4 foster youth have had long covid, perhaps more.
It is difficult to diagnose long covid in foster youth due to high mental health comorbidity and lack of continuous guardianship.
Parents with long covid are a high risk of having their children who may also have long covid seized by DHS.
There are basic screening tests and questionnaires available to pediatricians to help diagnose long covid and inexpensive solutions to help manage symptoms.
Children need access to stronger medical rights, especially those who lack access to a consistent supportive caregiver.
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Foster Kids & Healthcare
"Of the children and teens entering foster care:
About 50% have chronic physical problems (eg, asthma, anemia, visual loss, hearing loss, and neurological disorders)
About 10% are medically fragile or complex" -American Academy of Pediatrics (1)
Children with ME or Long Covid are likely to be classed as medically fragile or complex with healthcare providers often unprepared to handle such cases.
Additionally, moving of children in foster care may take them away from their former primary care doctors, increasing the likelihood of receiving poor medical care as history is a significant factor in treating "complex chronic illness" such as long covid.
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Prevalence Of Long Covid In Foster Kids & Why It Is Missed
While there is no data on the prevalence of long covid in foster kids, data suggests around 23% of children with covid will develop long covid symptoms with 20% suffering fatigue and 13% neurological complications. (2)
Predisposing factors for developing long covid include poor mentaWhile there is no data on the prevalence of long covid in foster kids, data suggests around 23% of children with covid will develop long covid symptoms with 20% suffering fatigue and 13% neurological complications. (2)
Predisposing factors for developing long covid include poor mental and physical health. Since 50% of foster kids have chronic physical conditions (1) and up to 80% have mental health conditions (3), it can be infered that most foster kids are at high risk for long covid. (2)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9990879/
https://www.ncsl.org/human-services/mental-health-and-foster-care
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Diagnosis of Long Covid in Foster Kids
Diagnosing long covid is foster youth is difficult and easily missed because:
1.) Long Covid and related illnesses (POTS, MCAS, Fibromyalgia, ME/CFS) are often mistaken for anxiety and depression and 80% of foster youth have mental health conditions.
2.) Diagnosis often relies on a guardian reporting behavioral and symptom changes following infection which requires continuity of care from a single guardian to observe.
Despite these challenges diagnosis of conditions such as ME, POTS, MCAS is possible:
Screening for ME can be done through symptom-based diagnostic guidelines such as the International Consensus Criteria. Doctors should be aware that ME can mimic depression symptoms.
Additionally screening for POTS can be done by using the NASA lean test which van be performed in any doctor's office in 10 minutes.
Finally screening for mast cell activation can be done by looking for new onset asthma, gastrointestinal problems, hives/rashes, anxiety or sudden mental health changes and sudden new food allergies.
Advocacy by a child or guardian is often necessary to teach pediatricians about these diagnoses as they have historically been neglected.
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Disability, Poverty & DHS
United Nations Convention On Rights of Persons With Disabilities Article 23 commits member States to not separating children from their parents on the basis of disability (of either the child, one, or both parents) but in practice this is rarely upheld. This poses a large risk to parents disabled by long covid.
"Removal rates where parents have a psychiatric disability have been found to be as high as 70 percent to 80 percent... In families where the parental disability is physical, 13 percent have reported discriminatory treatment in custody cases." (5) Remember that long covid while physical is often treated as a psychiatric disability.
Additionally, the poverty caused by long covid in adults can lead to family separation, especially in families of color. (4)
"The child welfare system is ill-equipped to support parents with disabilities and their families." (5) which means that children are often taken for their parents simply because no other support exists to help their parents raise them.
A study found that "Households that reported less than $5,000 in annual income had 2.6 times higher odds of having a separated child compared to households with incomes of $25,000 or more." (6)
As said by Bobbie Butts, Advocate, "If I wasn’t poor, I wouldn’t be unfit."
- California, April 15, 2022, Human Rights Watch (7)
https://www.washingtonpost.com/outlook/2019/01/30/family-separation-doesnt-just-happen-border/
https://www.ncd.gov/publications/2012/Sep272012/
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How To Help: Public Policy
New York City’s Administration for Children’s Services (ACS) stated:
"ACS believes that the best way to keep children safe is to provide families with the supports and resources they need, well before there is any interaction with the traditional child protection system." (7)
This is especially true of long covid kids and their parents. For parents long covid means they require much more help to care for their children but this does not change how loving and responsible they are as caregivers.
For long covid kids it is essential that they are able to remain with a caregiver who knows what they used to be like and intuitively understands the scope of the illness. This greatly increased the chance of diagnosis and appropriate treatment.
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How To Help: Foster Parents
“Advocacy is a huge aspect (of taking care of foster children with disabilities) that you don’t know until you get into it. Then you find out you’re often the only one advocating for these kids.” -Jennifer Haskew
(Foster parent to multiple kids with disabilities) (8)
It is essential that foster parents advocate for foster children. Ask them about their physical symptoms and carefully record their answers. Come prepared to pediatrician appointments with articles (see sources) and do not expect the doctor to be informed on long covid. Advocate for your foster child.
If your foster child is missing more than a few weeks of school the school district is legally mandated to provide a public tutor to your house. Public Law 94-142, the Education of All Handicapped Children Act of 1975, part of the Individuals with Disabilities Act. (9)
https://ammes.org/mecfs-in-children/
To learn how to support your child the Bateman Horne ME/CFS Guidebook may be helpful (10)
https://batemanhornecenter.org/education/mecfs-guidebook/
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How To Help: Pediatricians
The first step for a pediatrician is diagnosing long covid and its relevant sub-diagnoses like fibromyalgia, ME/CFS, POTS, and MCAS. This should be done using the most recent guidelines and are clinical diagnoses made from symptom records, diagnosis of exclusion and clinical exams. Once diagnoses have been made:
For fibromyalgia in the absence of ME/CFS physical therapy or yoga can be helpful. An SNRI or nerve pain medication may be necessary in cases of severe and debilitating pain.
For ME/CFS parents and children should be advised to limit their activity to avoid increasing symptoms. This may involve writing notes for school to excuse absences or avoid PE, helping to provide for homeschooling, or, for severe patients, explaining a gap in education.
For POTS children should be advised to increase fluid intake to 2 liters or more daily including adequate electrolytes like Pedialyte. Increasing salt intake and wearing compression garments can also alleviate symptoms. Beta-blockers or Ivabradine may also be used to medicate.
For mast cell activation syndrome (MCAS) the prescription of antihistamines like Zyrtec and Allegra can be a great first step in treating symptoms. They are more effective when combined with a h2 antihistamine like Pepcid (famotidine), Tagamet (cimetidine) or nizatidine. Additionally, families should be instructed to avoid high-histamine foods such as fermented foods. A full list can be found from SIGHI. (11)
https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
Some sources for resources to provide your pediatrician with. (12, 13, 14)
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Childrens Rights & Medical Care
Medical care for children with ME, particularly foster kids is especially precarious because of the lack of child rights in almost all countries. In particular, children are one of the only groups of people who do not have the right to consent to medical care.
This is especially concerning in the case of long covid because harmful therapies like graded exercise therapy (GET) and curative Cognitive Behavioral Therapy (CBT).
While harmful treatment numbers in children with ME and long covid are unknown the Trevor Project Found "LGBTQ young people who had ever been in foster care reported higher rates of past conversion therapy threats (18.3%) and conversion therapy experiences (12.1%) compared to their peers who had never been in foster care (9.1% and 4.4%, respectively)." (15) Indicating the risk of therapies being forced on children who know the treatment is harming them.
Finally, "there is rising concern about the appropriate use of psychotropic medications for youth in foster care." (3) This is especially concerning for long covid foster youth as long covid is often misdiagnosed as a psychiatric condition.
With less agency and few adults who believe them, foster youth with long covid are at high risk of receiving dangerous treatments against their will. Respecting foster youths' consent or revoking of consent for medical procedures is essential to protecting their human rights.
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Sources
1.) American Academy of Pediatrics - Physical Health Needs of Children in Foster Care
https://www.aap.org/en/patient-care/foster-care/physical-health-needs-of-children-in-foster-care/
2.) Nature - "Prevalence and risk factor for long COVID
in children and adolescents: A meta-analysis and systematic review"
https://www.nature.com/articles/s41598-022-13495-5
3.) National Conference of State Legislator - Mental Health & Foster Care (summary of state research)
https://www.ncsl.org/human-services/mental-health-and-foster-care
4.) Washington Post "Family Seperation Doesn't Just Happen At The Border"
https://www.washingtonpost.com/outlook/2019/01/30/family-separation-doesnt-just-happen-border/
5.) National Council On Disabilities
https://www.ncd.gov/publications/2012/Sep272012/
6.) Child Welfare 2015 "Poverty, Homelessness, and Family Break-Up"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5760188/
7.) Human Rights Watch “If I Wasn’t Poor, I Wouldn’t Be Unfit”
8.) Disability Scoop - "How Families Are Advocating for Children with Disabilities in Foster Care"
9.) American ME Association ME/CFS in Children
https://ammes.org/mecfs-in-children/
10.) Bateman Horne ME/CFS Guidebook
https://batemanhornecenter.org/education/mecfs-guidebook/
11.) SIGHI Histamine Elimination Diet Leaflet
https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
12.) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full
13.) CDC ME/CFS in Children Factsheet
https://www.cdc.gov/me-cfs/me-cfs-children/factsheet-healthcare-professional.html
14.) Bateman Horne Center Youth Resources
https://batemanhornecenter.org/outreach/youth/
15.) The Trevor Project - Foster Youth
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Foster Kids with Long Covid is a massive under-documented and under-reported humanitarian problem.
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Long Covid Kids are already at the mercy of whether their parents are understanding and have the capacity to research pacing and effective treatment or force them to go through damaging push crash cycles and Graded Excercise Therapy. But what about foster Youth for whom no such supportive parent exists?
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This post aims to draw attention to key problems at the intersection of Long Covid Post ViralIllness and Foster Care including
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-Poor medical outcomes and high rates of commorbid mental and physical disability
-Obstacles to diagnosis and recognition
-Disability, poverty & DHS removals
-Lack of childrens rights in medical settings
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As well as provide guidance on how pediatricians social Workers politicians and foster Parents can intervene to support kids with Myalgic Encephalomyelitis ME / CFS POTS MCAS and Long Covid.
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A pdf for easier reading with links to all of the sources listed is available at www.meandmore.net/s/fosterkids.pdf
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