Menkes Australia

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Home Treatment Other treatment

Other Treatment and Therapies

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There are a range of other treatment options available to help with the different symptoms of Menkes Disease. The following is a summary of a few most commonly used ones:

Physiotherapy: To help with low muscle tone issues and to maximise potential and skills.

Occupational Therapy: To help with selecting appropriate equipment to help with correct positioning and maximise skills.

Hydrotherapy: Boys with Menkes Disease can have often have trouble regulating their body temperatures, so a warm pool is essential. Hydrotherapy can help with exercising muscles and like most children, they often love the sensation of the water.

Music Therapy: As with all children, music is a great tool to encourage interaction and play. Boys with Menkes Disease typically have normal hearing and so listening to music is a great activity for them.

Alternate Therapies: Some Menkes children may benefit from alternate therapies. Please consult with medical professionals before undertaking such therapies to ensure that they are not detrimental to the child's wellbeing and health.

 

Some Specialists who may be useful:

Dietician: Most boys with Menkes Disease have issues with feeding and many require feeding tubes (commonly called NG tubes- in the nose, or PEGs- into the stomach). Dieticians can help with the type and quantity of feed required. Some boys are also able to eat orally and the dietician can advise the best foods to feed in order to help maintain a healthy weight.

Speech pathologist: To help with swallowing issues as well as different communication methods, depending on the individual's abilities.

Urologist: Many boys with Menkes Disease have bladder diverticulum (pockets coming from the bladder) and are susceptible to urinary tract infections because of this. Some boys may require surgery to fix this issue, or monitoring of the bladder.

Gastroenterologist: To help with issues relating to digestion and feeding. Many boys with Menkes Disease end up with a stomach feeding tube, commonly called a PEG to assist in their feeding.

Sleep Specialist: Boys with Menkes Disease can have issues relating to breathing and suffer from sleep apnoea. A sleep specialist can oversee a sleep study and  any required treatment such as the use of a CPAP machine or oxygen.

Paediatrician: As with any child with complex medical issues, a paediatrician is essential in order to co-ordinate and organise any necessary tests and procedures, as well as monitoring general health.

Neurologist: Boys with Menkes Disease are prone to seizures. A neurologist can prescribe any necessary medications to help control these seizures as well as monitoring and giving advice.

Metabolic Specialist: As Menkes Disease is a metabolic disease it is useful to have a metabolic specialist overseeing and managing different treatments and medications. These specialists are mostly located at the larger children's hospitals and will probably have more information and a greater understanding of Menkes Disease than other specialists.

 

 

 

 

Last Updated on Sunday, 30 January 2011 21:34