More children with PANS / PANDAS are receiving their IVIG infusions at home than ever before since the COVID-19 pandemic began. Despite even the best sanitization protocols and social distancing measures at hospital outpatient infusion clinics and stand-along clinics, many parents feel that home is safer for their immune compromised children.
This shift to home infusions is anything but easy on parents and caregivers left with the responsibilities of navigating the insurance approval process, coordinating with the doctor, pharmacy and home nursing company, and making sure everything is ready to go on infusion day.
Below are 10 tips from parents who are in the trenches of home infusions based on what they have learned along the way.
Supply management. Each month be sure to order all the items needed for your child’s infusion, so that you are able to have extra to draw from if there ever is a supply shortage or a mistake in your shipment. Supplies that may not be on the order initially, but you should consider requesting include: small heat packs to help warm your child’s veins (making them easier to find); silk tape if your child is allergic to plastic tape; latex-free self-adhesive tape to wrap around the IV injection needle after it is in place; and disposable under pads to catch fluids and blood from the needle insertion. Check the shipment(s) immediately upon arrival to give yourself enough time to request any missing items. Also, always check expiration dates upon delivery.
Supply storage. Convert a closet, shelves or cabinets to IVIG medical supply storage areas, so they are easy to access when you set up for your child’s infusion, yet out of the way in between infusions. Some storage ideas include: using a hanging shoe bag on the inside of a coat closet door to hold medical supplies; converting a craft storage cart to a medical supply cart; turning unused toy bins into supply storage bins and moving them to shelves (perhaps a top shelf in your coat closet) or cabinets that are out of your child’s reach; or if space is limited, using plastic bins to store supplies and keeping the bins in the garage or basement in between infusions.
Online groups. Find out if there is a parent or caregiver nearby who also has a child receiving in-home infusions, so you can support one another, and, if necessary, share unused supplies should one of you need something in a pinch. “PANDAS Parents IVIG information sharing” and “PANDAS PARENTS” Facebook pages are a great place to start, as well as PANS / PANDAS groups that are specific to your state.
Home prep. Set up an area where the infusion will take place in a way that makes supplies easily accessible, provides an area for nurses to prepare supplies, including the IVIG bag, and protects surface areas. Ideas include putting out a tray for nurses to use for prepping the IVIG line, a trashcan with liner placed where nurses are working, so they are not using your kitchen trash can, and paper towels and hand sanitizer for the nurses to use separate from those that the family uses.
Vein finder. Consider investing in a vein finder if inserting the infusion needle is repeatedly a traumatic experience for your child and your nursing company does not have one. Posting on a Facebook page and asking if other parents use a vein finder is a good place to begin your research.
IVIG protocol. Do not assume that your infusion nurse knows exactly how to administer an IVIG infusion. Hopefully, this will not be the case — but it has been known to happen. Educate yourself on the common practices associated with IVIG infusions and work alongside the nurse to ensure they are followed. PANDAS Physician’s Network documents IVIG treatment protocol as established by the National Institute of Health.
Side effects. Discuss with your child’s doctor what medications (over-the-counter or prescribed) can be used to help minimize side effects such as headaches and nausea. Online groups (see above) are an invaluable resource, allowing you to hear from other parents in your situation and bring ideas to your doctor for consideration. Keep in mind, however, that every child is different, and often it takes trial and error to find the right combination and administration timing for your child. The good news is that when you find what works for your child, the same routine typically works time after time.
Hydration. Begin hydrating your child two days prior to the first infusion day and keep it up at least until the infusion cycle is complete. Hydration will make it easier to find the right vein and help your child tolerate the infusion. In addition to water, I recommend Bodyarmor over Gatorade, for its natural ingredients.
Infusion rate. Pay attention to the infusion rate or speed. Most parents will say that slower is better, and I would agree based on my son’s experience. Too fast of an infusion rate increases the likelihood of side effects. This is another area that you will want to be well read on. Know what the common practice is, and when you find the rate that works for your child, make sure it is followed each time.
Scheduling delays. Sometimes infusion schedules are delayed for reasons beyond our control. While this is not the best-case scenario for your child, store the IVIG supply in the refrigerator until the next time. Just be sure to pay attention to the expiration date.
While you may see relief in your child’s PANS symptoms within days after the IVIG infusion, it is important to know that healing is gradual and takes time. Immunoglobin is thicker than blood, taking it several days to a week for the good antibodies in the immunoglobin to work their way through the blood brain barrier, where they can begin to counteract the bad antibodies that are attacking your child’s brain.
You also may see a return of PANS symptoms leading up to the next infusion. This is normal for many children, who then begin to see improvements shortly after the next treatment.
“Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)”, Journal of Child & Adolescent Psychopharmacology. Susan E. Swedo (NIMH), J. Frankovich (Stanford), T.K. Murphy (Univ. S. Florida).
Letter: IVIG for PANDAS and PANS by Susan E. Swedo, MD,
Chair, PANS/PANDAS Clinical Research Consortium.
“Use of Intravenous Immunoglobulin in the Treatment of Twelve Youths with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections”, Journal of Child and Adolescent Psychopharmacology, 2015 Feb 1; 25(1): 65–69. M. Kovacevic, MD, P. Grant, MD, and S.E. Swedo, MD.