A solution for children impacted by infections like STREP + Metabolic Disturbances

The PANDAS Network estimates 1 in 200 children may have PANDAS/PANS. For many patients, intravenous immunoglobulin (IVIG) therapy which is made up of antibodies found in plasma is the right choice. Especially useful in more severe cases of PANDAS/PANS, IVIG can give children and parents peace of mind, quality of life, and a chance toward complete recovery.

PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. A child may be diagnosed with PANDAS when: Obsessive-compulsive disorder (OCD), tic disorder, or both suddenly appear following a streptococcal (strep) infection, such as strep throat or scarlet fever. Pediatric acute-onset neuropsychiatric syndrome (PANS) on the other hand is a condition defined by sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other cognitive, behavioral, or neurological symptoms.

Children ages 3 to 13 are the groups mainly affected by PANDAS/PANS, the most vulnerable age being eight years old. Boys are also twice as likely as girls to develop PANDAS/PANS. Because it takes roughly 1,000 people to donate plasma in order to yield one treatment of IVIG, ContinuumRx works closely with the PANDAS Network to raise awareness around this condition, inspire people to donate plasma regularly, and collaborate to treat children effectively.

Founded in 2009, the PANDAS Network is dedicated to improving the diagnosis and treatment of children with PANDAS/PANS who is armed with an impressive network of doctors, researchers and scientists who strive to collaborate with subject matter experts, build public awareness, provide family support, and gather data and resources to better inform parents and the medical community about PANDAS/PANS. While some insurers have been slow to cover IVIG for PANDAS, many are beginning to see the benefits and will cover this much needed treatment and the global health community is moving toward universally recognizing PANDAS by January 2022.

“PANDAS/PANS was actually not recognized as a diagnosis for many years. The impact that the disease has on the child and their family is often enormous, and every patient has similarities, yet distinct differences, with the signs and symptoms, that they display.  The family dynamics are even more complicated when a sibling is also diagnosed.

ContinuumRx also recognizes that the patient may be diagnosed at a young age; the signs and symptoms may also reoccur. ContinuumRx is currently providing care for a 22-year-old male who was considered stable and thriving for six years.

Advocacy is absolutely critical. ContinuumRx is fully committed and supports the intense focus required to collaborate with our payor partners, clinical leaders in the field, and the impacted families to provide patient-centric care. ContinuumRx’s clinicians are specialists with the provision of IVIG, which is often prescribed in times of crisis, and with significant rescue, more neurologists are ordering IVIG on a monthly basis to stabilize their patients.”

Francine Mastin, Regional Director of ContinuumRx

Below we provide answers to some frequently asked questions:

What is the IVIG treatment protocol?
The dosage used in the National Institute of Mental Health (NIH) trials was 2 grams/kg of child’s weight (1 gm/kg per day for 2 days). Based on calculated blood volumes, some have suggested that the dose could be reduced to 1.5gm/kg (750 mg/kg per day x 2 days). However, there is no scientific evidence that either is more beneficial. The maximum dosage of IVIG is 100 gm/day (total dose over 2 days equals 200 gm).

Side effects can include:

  • Mild to severe headaches
  • Nausea, vomiting, diarrhea
  • Fever
  • Dizziness, palpitations
  • Fatigue

Side effects that require IVIG to be stopped immediately:

  • Chest pains
  • Trouble breathing
  • Sudden decrease in blood pressure
  • Sudden increase in heart rate

How long does it take for IVIG to work?
According to the PANDAS Physician Network, most children experience relief from symptoms 3-4 weeks following infusion. Some may experience immediate relief with others having a delayed response up to twelve weeks post infusion.

Will PANDAS/PANS ever go away?
Although it may take time, most children who have PANDAS/PANS recover completely with treatment. Symptoms tend to slowly get better over several months once the strep infection clears, but there could be potential ups and downs. PANDAS is likely to come back if a child gets strep again.

For more information on receiving IVIG treatments, please email info@continuumrx.com.

To learn more about the disease as a whole visit the PANDAS Network @ PANDASnetwork.org.

ContinuumRx is pleased to announce that Felicia Schaps MSN-Ed, RN and Vice President of Nursing and Clinical Compliance, is one of 16 members of the inaugural 2021 Fellow Program (FNHIA) cohort, made up of highly accomplished home and specialty infusion professionals.

The NHIA Fellow Program aims to advance the home and specialty infusion profession by recognizing the contributions and achievements of highly accomplished individuals. NHIA Fellow status is awarded to members who have successfully demonstrated a commitment to the field of home infusion for at least 7 years, have a record of sustained involvement and leadership within NHIA, and have been actively involved in educating practitioners and others.

Learn more about becoming a Fellow!

High-Risk Patients Benefit from National Home Infusion Association’s Pilot Program as part of Operation Warp Speed

MURFREESBORO, Tenn., and BIRMINGHAM, Ala., Jan. 19, 2021 — The impact that COVID-19 has had on long-term care facilities (LTC) has been a difficult journey to witness, with the Centers for Disease Control (CDC) reporting that 100,033 patients and staff have died across the United States as of November 24, 2020. The evolution and introduction of new treatments and vaccines for long-term care patients have been imminent.

National HealthCare Corporation (NYSE American: NHC), a leading senior care provider including almost 100 nursing centers and assisted living communities across ten states, and ContinuumRx, a regional leader in specialized home infusion and infusion suites with partnerships across over 40 hospitals and skilled nursing facilities, have received approval to collaborate and treat COVID-19 patients in six NHC centers in the Knoxville market with Eli Lilly’s bamlanivimab, an infusion-based antibody therapy geared to treat high-risk populations, especially patients 65+ who are susceptible to hospitalization or death.

On November 10, 2020, the U.S. Food and Drug Administration (FDA) issued an Emergency Use Authorization (EUA) to permit the emergency use of infusion-based bamlanivimab, and on December 8, 2020, the National Home Infusion Association (NHIA) announced a pilot program, in conjunction with the Department of Health and Human Services (HHS) and Operation Warp Speed, to increase the drug’s accessibility through qualified home infusion providers. ContinuumRx is one of 30 NHIA-approved infusion providers who have partnered with long-term care facilities like National HealthCare Corporation to identify, assess, coordinate, dispense, and administer this monoclonal antibody therapy to high-risk COVID-19 patients. With only 500 vials being distributed weekly across its national channels, bamlanivimab provides a unique and specialized benefit for both companies to increase the quality of care of their patients and provide valuable, medical data points around the therapy that currently are not available.

“For the past 50 years, National HealthCare Corporation has been a senior care leader with the vision of caring in a better way day by day. COVID-19 has heightened this commitment even further as we seek the opportunity to have bamlanivimab readily available in the Knoxville market for our high-risk patients to reduce hospitalizations and preserve life,” stated Stephen F. Flatt, President and Chief Executive Officer of National HealthCare Corporation. “Our partnership with ContinuumRx is a historical opportunity to contribute to Operation Warp Speed and protect our 65+ community even further.”

Keith Hartman RPh., Chief Executive Officer of ContinuumRx added, “Being placed in a leadership role by the NHIA, collaborating with NHC, and supporting the accessibility of new therapies like bamlanivimab is an honor and a pivotal opportunity in our industry. We have the potential to save lives safely, curtail the impact of COVID-19, and provide valuable data to the NHIA and Health and Human Services (HHS). The anecdotal outcomes are promising and we look toward expanding the accessibility of this service ever further.”

Why is there a need for bamlanivimab? According to the Centers for Disease Control (CDC), 8 out of 10 COVID-19 deaths reported in the U.S. have been in adults 65 years or older. Additionally, compared to younger adults ages 18-29, adults 65-74 years of age are 5x more likely to be hospitalized and 90x higher more likely to die. When cross-compared with adults 75-84 years of age vs. younger adults, hospitalization jumps to 8x higher and death rates to 220x higher1.

Bamlanivimab is an investigational medicine used for the treatment of COVID-19 in non-hospitalized adults and adolescents 12 years of age and older with mild to moderate symptoms who weigh 88 pounds (40 kg) or more, and who are at high risk for developing severe COVID-19 symptoms or the need for hospitalization. Bamlanivimab is investigational because it is still being studied.

High risk is defined as patients who meet at least one of the following criteria:

  • Have a body mass index (BMI) ≥35
  • Have chronic kidney disease
  • Have diabetes
  • Have immunosuppressive disease
  • Are currently receiving immunosuppressive treatment
  • Are ≥65 years of age

Infusion companies who have been approved by the National Home Infusion Association to administer bamlanivimab are required to follow clear responsibilities which include:

  • Make every effort to perform infusions within 24 hours of receiving a qualified patient referral.
  • Administering 700mg/200ml of bamlanivimab within 2 days of a positive test and within 10 days of symptom onset.
  • Clinically monitor patients during administration and observe patients for at least 1 hour after infusion is complete.
  • Continue to self-isolate patients treated with bamlanivimab and use infection control measures (e.g., wear mask, isolate, social distance, avoid sharing personal items, clean and disinfect “high touch” surfaces, and frequent handwashing) according to CDC guidelines.
  • Collect and submit required data to the NHIA/HHS as per established guidelines.

Patients and/or family members that are managing the long-term care of a high-risk patient should visit National HealthCare Corporation’s website @ nhccare.com for additional information, and medical providers seeking access to bamlanivimab infusion treatments should email info@ContinuumRx.com.

1Centers for Disease Control and Prevention. (2020, December 13) Older Adults At greater risk of requiring hospitalization or dying if diagnosed with COVID-19. https://bit.ly/35oSabP