A Guide for Parents: Education Strategies and Resources
Source/Author: The MPS society 
Support Group
How to work with the school to get appropriate services for children with disabilities - mental and physical. Click on booklet title to get pdf to download.

Cardiac Problems (in MPS disorders)
Source/Author: The MPS society 
Support Group
Detailed overview of the cardiac problems in all of the mucopolysaccharidoses disorders. Click on article title to open pdf.

Carpal Tunnel Syndrome and Trigger Digits
Source/Author: The MPS society 
Support Group
Discussion of the hand and finger problems that can occur in the MPS disorders.

Carpal Tunnel Syndrome in Children with Mucopolysaccaridoses
Source/Author: Yuen A, Dowling G, Johnstone B, Kornberg A, Coombs C.
Abstract
Article discussing the incidence, diagnosis and treatment of carpal tunnel syndrome in MPS children.
Full text article available by contacting [email protected]

CAUSES & HEREDITY
Source/Author: Canadian MPS society 
Support Group
Discussion of inheritance patterns in the MPS disorders: autosomal recessive and X-linked recessive

Communicating Hydrocephalus
Source/Author: The MPS society 
Support Group
Discussion of hydrocephalus -- how it is diagnosed and treated. Written for patients with MPS disorders, but most of the information is applicable to any one at risk for hydrocephalus.

Correlation between cerebral MRI abnormalities and mental retardation in patients with mucopolysaccharidoses.
Source/Author: Gabrielli O, Polonara G, Regnicolo L, Petroni V, Scarabino T, Coppa GV, Salvolini U. 
Abstract

CPAP and BiPAP
Source/Author: Shelley K. Dills BA, Amy K. Fisher, MS, CGC, Joyce Fox, MD
Support Group 
Overview of use of Bi-PAP and C-PAP in mucopolysaccharidosis disorder patients with sleep apnea . Can be applied to most skeletal dysplasia patients with sleep apnea. Click on fact sheet title to download pdf.

Daily Living with MPS and related diseases
Source/Author: The MPS society 
Support Group
Table of contents includes: getting information, emotional responses of siblings, dealing with strangers, asking for help, behavior, eating, sleeping and much more. Click on the booklet title to get the pdf to download.

Education Strategies and Resources
Source/Author: The MPS society 
Support Group
Source of information for parents and educators to help design and appropriate educational program for children with MPS conditions. 

Emotional Responses to Diagnosis
Source/Author: The MPS society 
Support Group
Discussion of the emotions that parents and families with their child is diagnosed (with an MPS disorder). This information is applicable for any parent or family whose child is being diagnosed with a genetic condition, including dwarfism.

Enzyme replacement therapy for mucopolysaccharidoses: opinions of patients and families.
Source/Author: Coman D, Hayes IM, Collins V, Sahhar M, Wraith E, Delatycki
Full text
Medical journal article that explores how patients who are receiving ERT and their families feel about the treatment.

Estrategias Y Recursos De la Educacion
Source/Author: The MPS society 
Support Group
IN SPANISH. 
How to work with the school to get appropriate services for children with disabilities - mental and physical. Click on booklet title to get pdf to download

Family Coping Strategies
Source/Author: The MPS society 
Support Group
Discussion of ways to help with your child who has a genetic disorder and their unaffected siblings understand the child's condition and what to expect. Also has parenting tips for children with special needs and their unaffected siblings, especially in regards to "making things fair" for the unaffected sibling(s)

Gerencia de MPS y del ML
Source/Author: The MPS society 
Support Group
IN SPANISH. 
Medical overview of the common issues experienced by patients with mucopolysacharridoses and mucolipidoses. Click on the title of the booklet to download pdf.

Is your child having anesthetic?
Source/Author: The MPS society 
Support Group
Information on anesthesia risks and concerns in high risk patients with MPS and other similar conditions. General principles can be applied to many other skeletal dysplasias. Click on booklet title to get pdf to download.

Management of ML and MPS
Source/Author: The MPS society 
Support Group
Medical overview of the common issues experienced by patients with mucopolysacharridoses and mucolipidoses. Click on the title of the booklet to download pdf.

MPS booklets
Source/Author: The MPS society 
Support Group
Link to pdfs of excellent booklets on the MPS (muscopolysaccharidosis) disorders, including Hurler, Hunter, Morquio and Maroteaux-Lamy. Booklets are in pdf format and discuss the cause, inheritance, prenatal diagnosis, clinical problems (divided by body system), general treatment and management and specific treatment of the condition. Click on the MPS condition you are interested in to download booklet.

Mucopolysaccharidoses and anaesthetic risks.
Source/Author: Sjogren P, Pedersen T, Steinmetz H. Acta Anaesthesiol Scand. 1987 Apr;31(3):214-8. 
Abstract
Discussion of the risks that can be encountered when administering anesthesia to an individual with one of the MPS conditions.

ORTHOPEDIC DISORDERS IN CHILDREN WITH MPS/ML: A PARENTS' GUIDE
Source/Author: Klane White, MD 
Support Group
Overview of orthopedic issues affecting patients with MPS disorders. Click on booklet title to download pdf.

OTITIS MEDIA: EAR INFECTIONS
Source/Author: Alice Martin, Joyce Fox, MD, Barbara Wedehase, MSW, CGC 
Support Group
Overview of ear infections in children with MPS disorders. Most of this information can be applied to children with other skeletal dysplasias who have chronic ear infections. Click on fact sheet title to download pdf.

Physical Therapy - For Professionals (for patients with MPS)
Source/Author: The MPS society 
Support Group
How to provide PT for patients with MPS written by therapists experienced with these patients. Specifically written for physical therapists. 

PHYSICAL THERAPY FOR CHILDREN WITH MPS DISORDERS: INFORMATION FOR PARENTS
Source/Author: Stacey C. Dusing, PT, MS, Angela Rosenberg, DrPH, PT, Sadye Paez, PT, MS 
Support Group
Information on the physical therapy needs of children with MPS disorders. 

The mucopolysaccharidoses: a clinical review and guide to management.
Source/Author: Wraith JE. Arch Dis Child. 1995 Mar;72(3):263-7. 
Abstract

The mucopolysaccharidoses: a heterogeneous group of disorders with variable pediatric presentations.
Source/Author: Muenzer J. 
Abstract
Reference for a very nice review article on the MPS disorders. Especially good for pediatricians.

Tienen su nino un anestisico?
Source/Author: The MPS society 
Support Group
IN SPANISH. 
Information on anesthesia risks and concerns in high risk patients with MPS and other similar conditions. General principles can be applied to many other skeletal dysplasias. Click on booklet title to get pdf to download.

Tracheostomy
Source/Author: The MPS society 
Support Group
Discussion of what a tracheostomy is, when it is needed, how it is put in, etc. Applicable to any condition with respiratory problems that might result in a tracheotomy.

Tube Feeding
Source/Author: The MPS society 
Support Group
Discussion of feeding through a gastrostomy tube (G-tube). Patients with significant neurologic or respiratory conditions may require a G-tube in order to be fed. Click on article title in order to download pdf.