Living With Primary Immunodeficiencies
A SUMMARY OF DO'S TO KEEP IN MIND
Do learn about your child's particular immunodeficiency disorder,
or your own, so that you can communicate intelligently with
your doctor and nurse, your own family, and others involved with
your family. Read, ask questions, learn. Help your child to understand
the disorder and to know that he/she is not alone. Participate in
family activities your immune deficiency organization offers so
that your child can meet other primary immunodeficient children.
Do communicate well. Meaningful communication is :
1. unhurried, thoughtful discussion with your doctor and
nurse. Do not let yourself feel hurried out of the office before
you are satisfied with answers to your questions.
2. meaningful talking with and listening to your
immune deficient child. Know, as best you can, what is going on
in his/her head and heart, not just what the IG levels and temperature
are and the date of the next infusion.
3. good talks between parents and other family members. Good communication
can keep your child and your entire family on a positive path and
a good life in spite of illness.
Do develop a good relationship with your doctor. The management
of your child's immunodeficiency treatment will be less stressful
if you and your child like the doctor, trust the entire office or
hospital environment, and communicate well together. Occasionally
through the years both parents may want to make an appointment with
the doctor simply to sit down together and discuss your child's
(or your) progress, treatment options, and future. If you and your
doctor communicate well you will have a greater understanding of
the condition which leads to better control. Be an active participant
in discussions. If you are not satisfied and have an option, change
doctors. Every sick person involved in medical care needs an advocate.
You, as a parent or partner of a primary immunodeficient person,
are that advocate and will need to be the one to ask questions,
take notes, be sure you understand, and probe for better service
or answers when it is necessary. As one mother said, " I am
totally pro-active in my daughter's care because I am her voice".
Do develop a good relationship with your child's school.
It is imperative that the school teachers and principal understand
your child's immunodeficiency disorder and the treatment.You do
not want an insensitive school environment to be an additional stress
for your child. School officials must know the threat of illness
and restrictions your child has and any special needs he/ she requires.
A twelve year old German boy said, "Thank God I have an understanding
teacher who is so careful with me". To eliminate the need for
frequent notes explaining school absence due to illness, a parent
in New Zealand arranged with the school for a laminated card her
child shows the teacher each time she reenters school. The card
gives her name, that she has primary immune deficiency and is often
in need of medical attention. It is signed by the Head Master. This
simplifies and expedites the attendance procedure each time.This
same parent stresses the importance of allowing your older child
to be part of the school advocacy process instead of a parent always
being the one to explain things to the school Principal/Head Master
or teacher. This allows your child to have some control in these
matters. Arrange for a classmate to furnish class notes or other
school information for home study. It follows too, that classmates
will be interested and helpful if they understand your child's primary
immune deficiency needs.
For other suggestions refer to the PiA publication, "Educating
a Child with Primary Immunodeficiency: A Guide for Schools"
Do make sure everyone knows that primary immunodeficiency disorder
is NOT AIDS.
There should be no confusion about this which could lead to fear
and inaccurate information being passed around in the school Make
sure they understand that primary immunodeficiency is not contagious
or transferable, and is not caused by the HIV virus
Do work out a plan for medical emergencies. Arrange in advance
for a friend or neighbor to come quickly if you suddenly need to
leave your other children to go to the hospital or doctor, or if
you need transportation or something else done for you during this
stressful time of sickness. Having someone available is comforting
and saves valuable time. Having a willing group of friends is even
better so that no one person is called upon too often.
Do know the location of a twenty-four hour chemist ( pharmacy
) so that you won't lose time hunting for one in the middle
of the night during an emergency or on a weekend when many may be
closed.
Do have important medical information handy. Have on hand
your insurance card or whatever forms your particular medical system
requires, your doctor's telephone number, your chemist's/pharmacy's
telephone number, etc. Keep this information with you at all times
so that you don't waste precious time looking for it when it is
suddenly needed.
Do keep a medical journal. Take this each time to the doctor's
office or hospital to record important information or instructions.
Date it, because later on, maybe even years later, you may not remember
something that could be significant. Or at the time of illness,
when you are emotionally involved - maybe even frightened - you
may not recall afterward what the doctor said or what he/she did.
Write it down at the time. Later it may be quicker for you to find
a piece of information in your journal than for the doctor to look
through a sizable case history. The PiA in the UK has a booklet
designed for this purpose.
Do keep your own personal journal. "Therapists report
that writing in journals during stressful times can help avoid depression
and also has physical benefits. Studies at Southern Methodist University
in Dallas, Texas in the U.S. suggest that people who write about
upsetting events visit their doctors about half as often as those
who write only about trivial events".15 One mother gave her
son his own journal and special pen for writing or illustrating
his thoughts. Another suggestion is to write letters expressing
your frustrations, but not mail them. This is a private, safe place
to express your anger and frustration.
Do try to alleviate your child's great fear of the needle.
Adults also have needle fear and some hospitals offer help from
their needle counselor who talks with the patients prior to infusion,
helping them with methods of relaxation and giving them the opportunity
to talk with others who have infusions. For a young child, it is
important that the physician and nurse show compassion and understanding
of the fear. A local anaesthesia, lignocaine cream, is sometimes
used an hour before infusion. Be assertive about getting this kind
of helpful atmosphere. No child should be forceably held down while
a needle is inserted, nor be punished for resisting. At some hospitals
a Play Specialist teaches young children how to put an IV drip into
a doll. Some families prefer Home Care service which comes to your
home with the gammaglobulin and gives the infusion. In the UK, 'Action
for Sick Children', London, published a book, 'NEEDLES', and it
is available at the PiA office (the Primary Immunodeficieny Association),
Do have pets, if possible. One young adult with primary
immunodeficiency said, "I remember we always had animals; cats
and dogs, and I think they really helped a lot. Dogs can be very
empathetic and are used in many hospital settings to cheer people
up. The dogs we had over the years definitely brought joy into my
life."
Do take precautions while traveling. Plan ahead. Ask your
doctor for names and telephone numbers of doctors in the country
or city where you are going. Be sure to keep all medications with
you - not in luggage that might be lost or temporarily misplaced.
Take along extra prescriptions, and call your airline in advance
to learn about national and international regulations regarding
carrying medications. Remember - people with primary immunodeficiences
must not have vaccinations of live serums. If your trip will
extend into the next normal infusion day, ask your doctor if a larger
dosage of gammaglobulin would be appropriate prior to leaving on
your journey. Keep your own doctor's telephone number with you in
case you need to call while traveling, and have something in writing,
preferably by your doctor, stating your child's (or your) diagnosis
and treatment. (Actually, this advise pertains to any member of
the family who is on medication.)
For more help refer to the IPOPI publication, "International
Listings of Treatment Facilities Travel Guide and National Member
Organizations".
You Mustn't Quit
You mustn't quit when things go wrong as they sometimes will.
When the road you're trudging seems all uphill,
When the funds are low and debts are high
And you want to smile, but you have to cry.
When care is pressing you down a bit,
Rest, if you must, but never quit.
Life is queer with its twists and turns,
As every one of us sometimes learns.
And many a failure turns about,
When he might have won if he'd stuck it out.
Stick to your task though the pace seems slow,
You may succeed with one more blow.
Success is failure turned inside out,
The silver tint of the clouds of doubt.
And you can never tell how close you are,
It may be near when it seems afar.
So stick to the fight when you're hardest hit,
It's when things seem the worst that you mustn't quit.
From DEAFinitely speaking, reprinted from Louisiana I.D.E.A.S
with permission of Immune Deficiency Foundation Louisiana |
