Hunter Syndrome (MPS II)
Both of these treatments are high-risk. They're usually used only if other treatments aren't possible. They also haven't been shown to help when the brain is affected.
Research is under way to find effective treatments for boys with severe Hunter syndrome.
Treating the symptoms. Because so many different parts of your child's body can be affected, you'll probably need to see several doctors to help you manage the condition, including:
- Cardiologist: a heart specialist
- Ear, nose, and throat specialist
Mental health professional
- Neurologist: works with the brain and nerves
- Speech therapist
Medication or surgery can ease some of the complications. Physical therapy can help with joint and movement issues. And occupational therapy can help you make changes at home and school to make it easier to get around and do things. Medications like melatonin may help with sleep.
Taking Care of Your Son
Focus on keeping your son healthy and giving him the chance to live a meaningful, rewarding life. Include him in family activities whenever it's safe.
Set the tone for others. Be positive. Keep an open mind about other people; they may not know what to say so they don't pry or offend or embarrass you. When someone asks about him, be matter-of-fact about his condition. Talk about him as a person -- his interests, his curiosity, and his sunny personality, too. Let them know what his needs as well as his abilities are, and how they can help, if that's appropriate.
Activity. Start stretching and range-of-motion exercises early to keep his joints flexible. Ask your physical therapist about ways to make exercises part of play. Choose large toys that are easy to grab and hold on to, that won't be damaged by chewing.
Encourage friendships. Talk to other kids (or their parents) about how to interact with your son. Walk up to him from the front, with hands out. Give him about an arm's length of space. It's OK to remind him to touch nice and not hit. But kids will be kids, so prepare him for stares and teasing with role-play and humor.