Suggestions for coping with HSP in your family:

• Prepare: HSP can last a while

While many (lucky) HSP patients do not suffer symptoms for any significant length of time, there are many who do. Often times, symptoms subside and flare up again. This can lead to frustration and anger.  Recognizing early on that this disorder could impact your life in a very real way anywhere from 4 weeks to 4 months to 4 years will help.

• Get support in advance

Let your family and friends know what is happening. Help them to understand that your child may go into crisis - repeatedly - for the next few weeks or months. This helps to minimize the frustration if you have to cancel a trip or meeting, abandon weekend plans or suddenly need help with a sibling at home.

• Advise your child's school about HSP

Include teachers, the principal and the school nurse.  Your child will likely miss a lot of school over the course of the disease.  If your child is hospitalized, find out if they have an in-house school.  Most children's hospitals have their own education programs and will coordinate with your child's school so they can keep up with their studies. This also helps to keep some normalcy in your child's life. We have provided a printable information sheet you can give to schools, churches, scouts, childcare etc. that will help explain what’s happening with your child here.

• Talk to your child on his/her level

It's very easy for the grown ups to be wrapped up in discussions and decision making without making sure the patient has an appropriate understanding of what is going on. You child's pediatrician or children's hospital can provide excellent support in this, often helping in ways that are not immediately obvious.  For example, when our daughter had her kidney biopsy, our Child Life Specialist reassured her about things I would have never even considered - "You won't look any different after you have your biopsy."

• Make sure siblings understand HSP

Obviously, parents can become very focused on their sick child. Siblings at home are probably being handed off to friends or relatives are not seeing much of their parents. When they do see their parents, the adults are likely to be exhausted. Siblings may feel resentment, anxiety, fear and they may act out as they try to cope with confusing, conflicting feelings.

• Be your child's advocate

Medical staff care about your child and will do the best they can, but they approach your child with a goal - "We need to get this IV started."  You may need to ask them to slow down, or to explain something to your child.  If your child has developed a routine that helps them cope with needle sticks or other procedures, communicate that to the nurse before he/she starts the process. Our daughter liked to do a “countdown” before a needle stick. If your child is in pain, ask for pain medication. If it takes more than 20 minutes, ask again. If you still don't have a response, go to the nurses station and demand that someone see your child. Your child is depending on you. Seeing you in this role will also reassure your child that someone they trust is controlling the situation, which will make it less scary for them.

• Write things down

Write down your questions for doctors as you think of them rather than trying to remember them all during visits.  Take notes when you speak with doctors. If you are in the hospital, you can ask if you can see the same doctors at rounds each day in order to provide continuity of care (different hospitals handle this differently).  If you feel you are getting conflicting advise from different specialists, ask for a discussion with all doctors present so they can hear each other's points of view. Don't be afraid to respectfully disagree with a doctor, or to provide your opinion.  Tell you doctors about your observations and "hunches" about your child - good doctors value input from the parents because no one knows your child better than you.

• Designate a "quarterback"

You need to have one point of access for questions that arise, and there needs to be one person coordinating the medical care provided by all the specialists involved in your child's care. This saves you having to call all around to different doctors' offices to get answers to your questions (plus a LOT of unnecessary stress). The best choice for "quarterback" would be your child's pediatrician, because they have the deepest knowledge of your child's other medical history. But your quarterback could also be one of the specialists if you find yourself dealing with that office frequently and you trust that doctor.

• Keep a list of current medications

This one's important, and easy to forget. But considering the number of doctors, nurses, and possibly insurance company people you'll be speaking with at odd hours, it's very important to keep such a list, including dosage and delivery method (oral liquid, IV etc.). Make sure all doctors are aware of this before prescribing additional medications to avoid any drug interactions. We have provided a downloadable meds log here.

• Don't forget to take care of yourself

It is vitally important that you not neglect your own needs for rest, nutrition, exercise if you can and as much relaxation as you can get.