Tips:

Dealing with Immunosuppression

by Kim R

  • Keep a supply of children’s and adult masks, urine collection containers, and prep towelettes/wipes in your home.
  • In the event your child has to go to the Emergency Room, call ahead.  Tell them your child is immunosuppressed and cannot wait in the lobby.  They will have an exam room waiting and should take you directly to it when you arrive.  Put a mask on your child before entering the Emergency Room, particularly during cold and flu season.  Try to potty your child and capture a urine sample (a clean catch to be on the safe side) at home, so you do not have to use the public bathroom in the Emergency Room.
  • If your pediatrician is part of a large practice, ask if you can have two or three pediatricians become familiar with your child’s file, and if you can regularly see one of those three pediatricians.  This will help ensure that the physicians making medical decisions for your child are fully briefed on your child’s medical history, restrictions, and needs and can reduce the chance of medical errors.
  • Even if sick, an immunosuppressed child should never go into the “sick room” in the waiting area of the pediatrician’s office.  When you call the nurse line to make an appointment explain your child is immunosuppressed and ask to have an exam room waiting for you. Do not wait in the lobby or waiting room.  Put a mask on your child, particularly during cold and flu season.
  • Many pediatric floors in hospitals have a “clean floor” and a “dirty floor.”  The clean floor is for children who undergo surgery and who are not contagious.  The dirty floor is for children who are sick and contagious.  Immunosuppressed children pose a dilemma when they are sick, because they should not be on the dirty floor or the clean floor.  Should your child be admitted to the dirty floor, ask your nurse what precautions are going to be taken to protect your child from other illnesses.  Ask for a private room.  Also ask if the medical staff can glove, gown and mask up before entering your child’s room if they are going to be working with other potentially contagious children. Avoid taking your child to any play areas or in the hallway.
  • Immunosuppressed children generally require a lot of blood draws.  Consider using Emla or LMX to numb those areas of your child’s arms where blood is taken a good 40 minutes in advance of any blood draw. You will need to cover the Emla/LMX with Tegaderm (or saran wrap in a pinch) to activate the numbing agent.  Use the Emla/LMX liberally.  These numbing agents will help minimize pain and suffering for your child.
  • If the phlebotomist you take your child is not good at getting blood from your child on the first try, then shop around until you find a phlebotomist who can.  Be aware that hospitals have some of the best phlebotomists, who are generally available 24/7 to draw blood for outpatients.  Also, some hospitals and ERs have a freeze spray that can be used to numb your child’s arm or hand right before a blood draw or IV.
  • Immunosuppressed children are exempt from school immunization requirements.  All you need is a letter from your doctor.
  • Have your child’s physician write a letter for the school that specifies when and what illnesses you need to be alerted to, should another child become ill in your child’s class or if there is an outbreak in the school.  This letter should establish a protocol for your child’s teacher and for the school nurse to protect your child.
  • You should also have a health plan on file with the school nurse that details your child’s medical issues, medications, and medical needs.
  • In the event that there are mass immunizations at your child’s school for the regular or H1N1 flu, ensure that your child is not in school that day or for 2-3 days following the immunizations.  The majority of school age children are vaccinated with a live vaccine, which can shed and cause your immunosuppressed child to become sick with the virus.
  • Similarly, your entire family should get the “dead” vaccine for the flu, so you don’t risk getting your immunosuppressed child sick.  Consider asking for the dead vaccine for any immunization you or your family members need.  If a parent or sibling requires a live vaccine, try to make arrangements to have the vaccinated person stay at a friend’s house for a few days directly following the vaccination to protect your immunosuppressed child.
  • Do not trust the pediatrician to remember that your child cannot have live vaccines at well child visits when your child is getting vaccinations.  Ask in advance of all well child visits whether a live vaccine is scheduled – not just for your immunosuppressed child but for any siblings as well.
  • Keep in mind that your child’s immunosuppressant drug levels can be affected by diet.  Try to maintain some consistency in the food and liquids your child takes when he takes his medication.  Alert your pediatrician or treating physician to any changes in diet.
  • Be aware that your immunosuppressed child will be sick a lot and she will miss a lot of school.  This will be “normal” for you.  Develop strategies for minimizing the cabin fever that results from being housebound during cold and flu season and carve out time to work on your child’s academic skills at home to help make up for the time being missed in school.
  • Your child quite likely has an Individualized Education Plan.  When your child misses a lot of school, consider asking the pediatrician to write a request for homebound instruction, so you can request that your child’s school have a teacher and all physical, occupational, or speech therapists come to your home.
« »

Content ©2011 Kimberly Ruff, All rights reserved.
All content subject to content disclaimer
Site design by Lewes Technology Consulting, LLC
Hosting by identityVector Solutions, LLC