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Coping and support
By Mayo Clinic staff
Support for you and your family
The challenges for parents, families and caregivers of children with severe disabilities are great. Joining a support group for parents of children with Hunter syndrome or other MPS syndromes can be a great way to obtain practical information and daily living strategies from other parents in similar situations to your own. Many families often find friendship and encouragement in support groups, as well. Ask your doctor if there's a group in your area.
The intense supervision that may be needed for your child can cause you and other caregivers to become physically, mentally and emotionally exhausted. It's important to get help from other family members and to find other kinds of support.
If respite care is available, take advantage of it so that you can have a break and be more effective in the long run to meet the day-to-day challenges of caring for a child with special needs.
Letting others know
Due to a narrow airway, people with Hunter syndrome often have difficulty receiving a breathing tube (being intubated) for general anesthesia. You may wish to note this on child care or school forms so that emergency personnel can be alerted to this fact, in case your child has an emergency and you're not there. An experienced anesthesia specialist (anesthesiologist) should perform the intubation of a person with Hunter syndrome.
Check with your county and state for resources that may be available to you as a parent of a child with special needs.
- Martin R, et al. Recognition and diagnosis of mucopolysaccharidosis II (Hunter syndrome). Pediatrics. 2008;121:e377.
- MPS II (Hunter syndrome). National MPS Society. http://www.mpssociety.org/index.php?option=com_content&view=article&id=129&Itemid=18. Accessed May 6, 2010.
- Mucopolysaccharidoses fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/mucopolysaccharidoses/detail_mucopolysaccharidoses.htm. Accessed May 8, 2010.
- Kakkis E, et al. Clinical features and diagnosis of the mucopolysaccharidoses. http://www.uptodate.com/home/index.html. Accessed May 5, 2010.
- Kakkis E, et al. Complications and management of the mucopolysaccharidoses. http://www.uptodate.com/home/index.html. Accessed May 5, 2010.
- Muenzer J, et al. Multidisciplinary management of Hunter syndrome. Pediatrics. 2009;124:e1228.
- Newborn screening. Centers for Disease Control and Prevention. http://www.cdc.gov/nbslabbulletin/bulletin.html. Accessed May 6, 2010.
- Guffon N, et al. Bone marrow transplantation in children with Hunter syndrome: Outcome after 7 to 17 years. Journal of Pediatrics. 2009;154:733.
- Elaprase (prescribing information). Cambridge, Mass.: Shire Human Genetic Therapies; 2007. http://www.elaprase.com/pdf/ElaprasePI40-0120_REV_0_GT4.pdf. Accessed May 5, 2010.
- Safety and clinical outcomes in Hunter syndrome patients 5 years of age and younger receiving idursulfase therapy. ClinicalTrials.gov. http://clinicaltrials.gov/ct2/show/NCT00607386. Accessed May 6, 2010.
- Burrow TA, et al. Review of the use of idursulfase in the treatment of mucopolysaccharidosis II. Biologics: Targets & Therapy. 2008;2:311.
- Friso A, et al. Genistein reduces glycosaminoglycan levels in a mouse model of mucopolysaccharidosis type II. British Journal of Pharmacology. 2010;159:1082.
- Piotrowska E, et al. Genistein-mediated inhibition of glycosaminoglycan synthesis as a basis for gene expression-targeted isoflavone therapy for mucopolysaccharidoses. European Journal of Human Genetics. 2006;14:846.
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