Some PH kids have relatives with PH, but the disease, although rare, can pop up in a child of any age, whether boy or girl. Babies can even be born with PH. This is usually because they don't get enough oxygen around the time they are born. In older children, we don't really know why primary pulmonary hypertension affects some but not others. There might be a genetic reason inherited from a parent, plus exposure to something else in the environment. Sometimes a child's pulmonary hypertension is caused by another disease. If you have PH, it's not your fault-it is not punishment for something bad that you did. Nor is it your parents' fault. It just happens.

Children with untreated PH are often tired a lot, gasp for breath when they exercise, and their lips and fingernails might have a bluish tint. Because children run around more than adults, and their blood vessels relax and constrict more easily, children are more likely than adults to get dizzy and faint. On the playground, a child with PH might have a hard time keeping up with the others.

PH in children is treated pretty much like it is in adults, with prostacyclin, calcium channel blockers, endothelin receptor antagonists, warfarin, etc., but the dosages may differ. Until we find a cure for PH, treatment will nearly always have to be lifelong. But better, easier-to-use drugs will probably be found in the not-too-distant future. Lung transplants are considered in children when other remedies fail, and sometimes parents or others donate one of their five lung lobes to a child with PH. Because two lobes are needed, it takes two donors. This is an expensive, risky treatment, but such procedures have given years of life to some children with PH.

Unfortunately, if PH in children is not treated, it seems to worsen more quickly than it does in adults. But with treatment, young children do better than adults.

It's not news that kids don't like swallowing pills. One creative mom taught her child to swallow them by first practicing on mini M&M's. She then moved on to regular M&M's in a spoonful of applesauce or ice cream, and from there to real pills. Keep in mind that some pills, like Procardia XL, should not be crushed, as doing so will change the way the drug works.

If you need to hear from a helpful person, why not call the toll free PHA helpline. This helpline is staffed by volunteers and is usually available throughout the daytime hours. If you would like to hear from a person dedicated to helping children ask for a member of PHA's Children's Committee to call you back. Kids ask for your parents permission before calling. 1-800-748-7274

Many states have summer camps for chronically ill children. Here are some online resources:

• Things to consider when finding a summer camp for a child who has PH: Spring 2007 Pathlight article by Nancy Frede, PH parent and Pathlight Under 21 Parent Editor
• Camp Boggy Creek: A “Hole in the Wall Gang Camp” which has multiple locations, camp week is free -- this Florida location has taken care of PH kids before.
• Camp Joyful Hearts
  
• Camp Odayin
  
• Camp Sealth
• The Painted Turtle
  
• Double H Hole in the Woods Ranch
  
• Federation for Children with Special Needs camp guide (summer fun 07) lower right hand side of home page.
  
• National Information Center for Children and Youth with Disabilities has a summer camp resource.
• Your local hospital may offer camps to children with chronic illness.
• American Camping Association
• National Camp Association

The material for PHA family "A Place for Learning" has been adapted from Pulmonary Hypertension: A Patient's Survival Guide. Chapter 6 of the Guide focuses on Children and PH.