Living With Primary Immunodeficiencies

WHAT TO EXPECT AS YOUR CHILD GROWS OLDER

INFANCY THROUGH ADULTHOOD

Infant and preschool years
This is a very difficult period because your young child is helpless and cannot communicate with you verbally. It is painful to see him/her in the hospital, so your emotions are overloaded. If your child is sick at home you get little sleep, your family's usual routine is altered, siblings might have to make sacrifices, and the constant vigil of the child's temperature and medication is stressful. The questions become second nature - Is he coming down with an infection? Does he look better today? Worse? Should I call the doctor? Should I do this? Should I do that? At first it is frightening , but in time you will calmly take it all in stride as you develop a routine of recognizing signs and symptoms of illness and responding correctly.

Early school years
It is important that you have a good relationship with the school your child attends at all levels, and that your child's teachers are aware of primary immune deficiency so that there is no confusion with AIDS. Your child may want to take the children's book, OUR IMMUNE SYSTEM to school for the teacher to read to the class. A young boy took this book to school with his new title, THIS BOOK IS ABOUT ME, printed over the original, and took great satisfaction in seeing that his teacher and schoolmates understood primary immunodeficiences and his infusions. You may need to sit down with the teacher and explain in detail about your child's disorder, particular signs of an oncoming illness, treatment, and any special needs. If the teacher is not sensitive to your child's situation, you may wish to speak to the Principal or Head Master and request a different teacher. While your child is home sick it may help him or her to look through family picture albums showing happy events and healthier moments in their lives.

Adolescence and Teen years
At this time there may arise some subtle problems for your child. Many primary immunodeficient children and young adults are active participants in sports, but for others less physically demanding activities may need to be encouraged. Some boys with primary immunodeficiency tend to be physically smaller. In an environment where his physical strength and sports ability may be highly regarded by his peers, he may feel left out, embarrassed, experience low self esteem and even depression.

Keep a good line of communication open between you and your son so that you know what he is experiencing . You may be very surprised at his mature concerns. This is the time to encourage and support his interests in less physically demanding activities. Perhaps instead of being on a team he could pursue being a sports writer. Photography and computers offer all manner of hobbies or later professional pursuits.

A young man with CVID (Common Variable Immunodeficiency) and chronic malabsorption commented in retrospect, "I think all kids want to fit in. I wanted to fit in, to feel a sense of belonging. Illness can really isolate you if you can't spend time with your friends and miss out on important social occasions. I got depressed from feeling inferior, taking medications, being examined by doctors, feeling sick, and waiting to get well. After years of doctors and nurses touching me and sticking me with needles, not to mention all the other uncomfortable and degrading tests, I kind of disconnected from my body emotionally. I not only felt inferior physically, I also felt frustrated and depressed that I needed to consent to it all to get better.

" The depression is lifted after getting well, but if you get sick again, the depression can come back even worse. It is the repeated illnesses and long drawn out illnesses that really depressed me. When you have a history of illnesses and know that another infection or problem will mean doctor visits, side effects from drugs, maybe a hospital stay, weeks or months of feeling sick, needles, and missing out on opportunities, the flood of all those feelings you've had before come rushing in. And even worse, your sense of hope gets beaten down. You get pessimistic about life which is a very disempowering attitude." Help your child find a way to fit in, to feel that sense of belonging. Make extra effort to support and share your child's interests or talents. Seek organized groups sharing his interests. A chess club? A photography club? Or start your own.

Young people at this age are interested in their appearance and social life. A steroid-induced puffy face or missing parties and school functions because of illness is depressing, and it also hurts the parents seeing their child endure this kind of pain. You and your child together will need to find alternatives to those missed events. Create your own celebrations to include their friends when better health permits. Of course this will not entirely replace what was lost, but it may soften the disappointments.

One mother offers her experience: " Girls like pretty things such as earrings in pierced ears, chemicals called makeup, and fashionable shampoos, but pierced ears allow infection, and make-up and shampoos may cause skin problems. In addition, females, by nature, are often more expressive of their emotions and this is often not acceptable in a male dominated health sector, so young girls learn at a very early age not to express the emotional impact of it all. Not wanting to act in an attention-seeking manner or be labeled as 'bad' or 'not coping', she might actually be at risk of being ignored. Being too placid and undemanding could result in doctors and parents not really hearing and therefore, not understanding what the child is experiencing physically and emotionally. She may instead show her emotions at home, late at night when nobody else except her parents are there to hear and console. Also, a girl may prefer a female doctor, or want her mother in the examining room with her during checkups and infusions." In most hospitals this is normal policy for all children, but unfortunately, some doctors still have not realized how beneficial this is emotionally to both the child and the parent, and still refuse their presence.

But girls are not the only ones intimidated into silence. This is frequently true for young boys as well. The attitudes of the physicians and nurses are partially responsible for the emotional comfort of the patients and their parents, and people working with pediatric patients are normally caring individuals. However, some doctors' offices become so crowded and busy that the doctors and nurses lose their compassion and patience. If you or your child are not comfortable with your physician, and you have options, change physicians.( See the section on developing good relations with your doctor.)

Usually our children are very sick the first time they see the inside of a hospital, but if your child's first hospital experience is for a non-emergency purpose, and if your child is fearful of the "unknown", you may want to visit the hospital prior to the appointment day. One mother took her son before his scheduled surgery to see the pediatric ward; where the nurses' station was located, and what the children's rooms looked like. The friendly nurses and the colorful Disney characters painted on the walls satisfied his curiosity and eased his concern.

Teenagers do not want to be different, and they may not want their peers to know they have a health problem. During high school your teenagers may begin to withdraw from participating in school activities because of frequent illnesses which requires canceling activities. These frequent disappointments may cause them to stop trying. They may begin spending time with more solitary activities such as music, reading, photography and computers. These are all good interests that will enrich their lives, but try to encourage your children to maintain contact with others, even if it is only a few friends who understand their health problem and its restrictions. If you participate in their school activities, most likely they will maintain some level of participation.

Make sure the school staff is also aware of your child's problem to insure their sensitivity to his/her needs. An understanding school staff can make a difference. A student with primary immunodeficiency and malabsorption who needed closer access to a toilet was given permission to use the teachers' restroom nearer his classrooms, and when this student was home-bound for several weeks his teachers cooperated with his private tutor to help him keep up with his studies. Such cooperation and sensitivity from the school Principal and teachers provided a continuity and connection to the school.

If parents talk too much about the financial problems and other frustrations, the child with immunodeficiency could grow up feeling guilty of being a burden to the family. Depression could become a serious consequence. Early signs of this should be taken seriously and professional help sought.

While attending university, children may go through a period of denial of their disorder and even refuse infusions. Explain your objections and concerns calmly, ask questions and demand thoughtful consideration on their part, and then let them make the decision. They may get sick before consenting to resume a normal schedule of infusions. You must allow your older teenager to make his or her own decisions, with your guidance, by this time. You are no longer in charge after years of being totally in charge. When entering the university, your child may want to contact the university health center and go in to meet the doctor. Have your immunologist send your child's history so that the staff will be familiar with your child before an illness sends him/her there.

Holistic medicine is of great interest at this age, and if your child becomes dissatisfied with the usual medical treatment, he may try alternative means such as homeopathy, meditation, acupuncture, acupressure, etc. Do not be alarmed. Let your child try what gives him hope, but so long as it is discussed with his doctor. Your child will find out if it really helps or not. It might help psychologically for a while, if not physically. Keep in mind that this is part of your child's need to be in charge, and this is healthy.

Many young people with primary immune deficiency have a normal active social life, but for a few, recurring illness creates a lack of trust in one's body. What will my health situation be next week? Next month? Should I try to plan anything? Will I feel well enough to go? Will that event interfere with my infusion? It becomes easier to withdraw. Just as some parents may stop trying to plan, in case their child will be sick, the immune deficient person may stop trying to plan and slip into a solitary lifestyle. From their child's early years, parents must focus on nurturing positive thinking and encourage their child to take some risks. While accepting the possibility of illness disrupting a planned activity, primary immunodeficient persons should still plan. They should not go through life allowing possible illness to prevent them from taking risks that lead to many successful experiences and joyful events. Go ahead with plans for a backpacking or ski trip. Just because they missed out on one doesn't mean they will miss the next opportunity.

Encourage your teenager to join a support group. Sometimes this is resisted because during the well times he/she doesn't want to be reminded of this disorder. One young man said, "I just want to get on with my life and not think about it." But developing such a relationship could prevent a feeling of isolation and loneliness resulting from recurring illnesses. Even if this contact is through E-mail it would be a connection to others who share the same challenges and can provide empathy and friendship.

The Children's Hopes and Dreams Foundation, Inc. in the U.S. serves children with chronic illnesses with its Pen-Pal Program for ages 5-18. They match children by age, gender, and within a broad catagory of illnessess to help them develop friendships and support with someone who understands and relates to them and their illness. Hospitals and healthcare professionals can provide the necessary applications. IPOPI member organizations around the world could even create their own pen-pal programs matching children with primary imune deficiency. Older children may prefer Email or the IPOPI Web site's Chat Room if they have access to a computer.

Young adulthood
Soon your young adult will be planning a career. In the U.S. this is when medical insurance coverage can become a problem. No longer covered by the parent's policy, the young adult may have group insurance where he is employed, or must obtain his own private insurance. However, the Immune Deficiency Foundation in the U.S. and pharmaceutical companies that produce gammaglobulin have insurance specialists, 'Reimbursement Specialists', who advise and help in these matters. In countries with nationalized medical care the cost of treatment is not as much of a problem.

Other concerns for the future are the demands of a full-time job, maintaining personal relationships, marriage, and whether to take the risk of having immune deficient children. ( Before a pregnancy, a couple may want to discuss this with a genetic counselor to help them evaluate their risks. )

These are all very serious considerations requiring thoughtful discussion and encouragement, but always remember that it is quite possible to live a reasonably good life within the restrictions and responsibilities of this disorder - there is a man with primary immunodeficiency in the U.S. who not only is married and has children, but is a doctor - an immunologist!