Once you receive your child's Lupus diagnosis, you're probably asking yourself, "now what?" Your mind in is probably going in a hundred different directions, with seemingly endless questions. What does this mean for your family? What do we tell our other children? How likely is that my other children will get Lupus? Is it contagious? What do we tell others? The questions are endless, and they don't always have direct answers. Just like the disease, each family's situation is different. It will take time to adjust to your "new normal", so take a deep breath and take it one step at a time.
Educate yourself and others about this disease. Becoming an expert is a process; it takes time and is always changing because of ongoing research. The more information you and your child have the less frightening the situation and their future seem. Knowledge is power, power that will help you both feel more in control of, rather than a hostage of the disease. Keep current with the Lupus community, talk to your doctor and don't be afraid to ask lots of questions. Research the internet and subscribe to newsletters and updates (such as ours.).
Educating your child about this disease is very important. They may be very confused, overwhelmed and scared. But educating them can help alleviate those fears. How this is handled depends on the child's age and personality.
For children under age ten long lengthy explanations on their lupus diagnosis are not necessary. Children this age look to their parents for guidance, and direction. They do need to understand the disease, and that they did nothing wrong. They did not catch it and they can't give it to others. It is important that they understand why they need to take their medications, but going into lengthy explanations for a child this age is not necessary and may actually do more harm than good.
In general children over the age of ten can begin to understand the complexity of the disease process. Start to explain the disease to them, but take cues from them so as not to overwhelm them, remember that like the disease each child is different and go at a pace that is comfortable for them. From time to time check in with your child to see what they understand about the disease and clear up any misperceptions they may have. Don't let the questions and explanations stop at the diagnosis. For older children you can begin to explain the names of their medications and what they are for, allowing them to gradually take on more responsibility for their care and decision making in their health care.
Educating others is just as important as educating yourself and your family. Educating teachers and leaders of activities your child is involved in is necessary. You will have to explain physical restriction your child may have, fatigue, why sunscreen is a must, and excessive absence due to health or doctor's appointments. There will be times that your child will not feel well, or need to rest at school. So it is very important that all those that come into contact with your child are educated about the disease. Knowing there are people at school they can go to that will understand and support them will provide your child with some piece of mind as well.
Be prepared to answer questions and educate friends and neighbors who may not understand much about the disease, and may be afraid they could "catch" Lupus.
Just as you will have days that you are angry that your child has a Lupus diagnosis, your child will have days like this too. These are all natural feelings, they will be angry about the new limitations they have, side effects of the medications they are on, or the frequent doctors' visits and lab tests. Children may express this anger by hating everything that has to do with their "new normal". The simple things most people take for granted are no longer simple. Things such as not being able to go outside even for a brief period of time without sunscreen, hats and protective clothing.
If your child is a preteen or teen their changing appearance will more than likely be a great source of anxiety. The side effects of steroid use include weight gain, acne, unwanted hair growth, easy bruising, thinning skin, and poor growth in general. All things that will add to making your child feel "different" from others at an age when all they want to do is fit in. To avoid this some children may stop taking their medications. Most children at this age do not understand the permanent consequences that this will have on their bodies and maybe even their future. They do not understand that it can't just "start over". If you suspect your child has stopped taking their medications, even if you administer them, watch closely for a couple of days to make sure they are not disposing of them after your turn around. Make note of when refills will be needed, is there still a lot of medication left in the bottle when this date arrives? If you do discover that your child has not been taking their medications contact your doctor immediately. For most children a discussion about the importance of taking their medications and the consequences if they are not taken will be effective. If you still don't feel you have gotten through to your child don't be afraid to involve your doctor and possibly other professional help. Remember that Lupus itself, as well as some of the medications they are on can affect your child's ability to think clearly, and what seems reasonable to you may not seem that way to them.
Take time to talk to your child often and listen to them, not only to what they are saying, but by what might be left unspoken. Whether they are feeling sadness, frustration, or rage, it is important for them to feel they can express their emotions. Be available and supportive and ask how they are feeling. They should feel that they can share their thoughts and feelings without you overreacting or becoming upset. Remember fear and anxiety is often based on the unknown or inaccurate presumptions, so always inform them of what they can expect at the next doctor's appointment, test or procedure. So many things are out of their control, so try to find something they can control such as which arm to draw blood out of.
Children with chronic illness have more stress to deal with than other children and it may interfere with life's joys and accomplishments. Encourage your child to be as positive as possible focusing on their strengths. Be vigilant and watch for signs of depression, and address the issue immediately.
It is equally as important to include your other children in the discussions of their sibling's health. Undoubtedly there will be situations that their sibling's health may interfere with routine parts of life as well as special activities. If the siblings are aware of, and have an understanding about what is happening to their sibling it can help to reduce tensions. Encourage them to ask questions but always keep the answers age appropriate. They may still have some feelings of resentment when their activities are disrupted, but including them in the discussions turn these into teachable moments that they can learn compassion and acceptance of those that are different from them.
Siblings may also be afraid that if their sibling has a Lupus diagnosis they will get it too. Understanding the disease may help to eliminate some anxiety they may be feeling. Because siblings have the same genetic predisposition and live in the same environment of those living with Lupus they are at a slightly higher risk of developing the disease than the general population, but it is still very small. One study put the risk of those that have a sibling living with Lupus developing a Lupus diagnosis within ten years at roughly 1 in 10. Siblings may have a positive ANA test, but that does not mean they will go on to develop Lupus.
Support groups that support the whole family and address issues that affect each member of the family, not just the child with a Lupus diagnosis or the parents are excellent resources for the family. Meeting with and sharing your experiences with others in similar situations can help everyone to not feel so isolated or different.
It is a great challenge for any family to care for a chronically ill child. After the diagnosis you will undoubtedly educate yourselves, your family, teachers and friends about the disease and the special needs of your child. One of the more difficult things you as parents will have to deal with is balancing the new normal of life with Lupus, while still letting their child grow up and have as normal a childhood as possible. Understandably you want to keep your child as safe and healthy as possible, but remember they want to be able to do all the same activities their friends do. A good way to approach this is to ask yourselves if you would let your child do this if they did not have a Lupus diagnosis. Because excessive sun exposure may make your child's Lupus worse they may not be able to spend the day at the beach or pool, but they should still be able to participate in most normal childhood activities.
It is a good idea that no matter where your child goes they always carry a card with their doctor's emergency number with them in an easy to find place in case they are injured or become ill. Obtaining a medic alert bracelet is also a precaution you might want to consider if your child is on chronic steroid therapy. Some children may resist this idea as it is a visual reminder to all that they are different, or that something is wrong with them. These tags can be worn in other less obvious places, but if they still resist this try giving them the control and let them pick the style and color.
As the adult you are essential to the overall care and health of your family, so your health physically and mentally is extremely important. You will need more than just yourself and your spouse (they are going through this too) to rely on for support and encouragement. Seek out help and support; don't try to take it all on yourself. Spend time taking care of yourself, eat healthy, and get regular exercise and plenty of rest. You are no good for your family if you are not healthy yourself.
Your mental health is equally as important as your physical health. It is very common for parents to go through the grieving process when a child receives a Lupus diagnosis. Parents may be grieving the loss of their child's health, perceived future, or "normal" life. The reason may be different for each individual, but the process is the same. Learn to recognize this and seek help and support. As the parent you will worry about everything from things such as the side effects medication, progression of the disease, and preventing flares to the effect on friendships. But stay positive and remember that children will take cues from adults in their lives as to how to handle things. Once we recognized that we were going through the grieving process for our son, it was much easier to get past it and move on.
Moving beyond the diagnosis you should continue to raise your children through the same stages as any other child. But now you need to include your "new normal" in that life. Encourage them to participate in all the normal childhood activities, but with respect for their bodies and the disease.