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.
What is PANDAS/PANS?
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
- Dizziness, palpitations
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 firstname.lastname@example.org.
To learn more about the disease as a whole visit the PANDAS Network @ PANDASnetwork.org.