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Author Topic: therapy management - PT, OT, SLP  (Read 24863 times)
bgrenier
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« on: November 16, 2009, 02:13:06 AM »

I am a physical therapy student from Drexel University.  I am on my clinical affiliation at an outpatient pediatric clinic where I am working with a little boy who has a diagnosis of vanishing white matter disease.  I have found plenty of information on your website and others regarding what the disease is, how it progresses, and provoking factors. 

However, I am having a tough time finding any information in regards to how the stress of physical activity may affect the progression of the disease.  Do you by any chance know of any useful resources? 

If possible I am looking for what physical therapists can do to assist in managing VWM, what occupational therapists can do, and what speech language pathologists can do. 

If this disease is progressive are we helping these patients to gain function back after an episode of deterioration or are we adding to the progression?  Thanks so much.
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4Hewli@52
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« Reply #1 on: September 06, 2011, 08:41:50 PM »

Our son is 11 and was diagnosed with VWM 6 years ago.  Over this time he has become completely wheelchair bound and has a high level of spasticity in his legs.  He also has a high degree of scissoring.
His range of movement in joints is slightly restricted but movement is generally restricted by extra muscle tone.  His physio (daily) consists of gentle stretches and manipulation of joints to prevent further loss of mobility.  He uses a standing frame daily for up to half an hour.  He takes Baclofen to reduce spasticity.  He also has weekly hydrotherapy which seems beneficial and he moves well in warm water.  When he was younger and was still walking he had botox injections in his calf and adductor muscles which worked well for a time.
In our opinion physio does help gain function back after an episode of deterioration and that everyday physical activity does not lead to deterioration.  Our son has had several acute deterioration episodes but these have always been after head trauma or illness.
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Saz
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« Reply #2 on: October 29, 2011, 01:55:27 AM »

Hi
My name is Sarah, I have just read your post and I am very sorry thatbyour son has this disease. I have 2 children and they both have vim, my son was diagnosed when he was 3yrs and my daughter when She was 9 mths. We liv in the uk in northern Ireland and would lve to hear from you as very little is known about vim over here. You can contact me through our website noahandgraciecoatescoates.org if u leave a message I can get back to u. Hope you r all well at present.
 
God bless
Sarah
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