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Permalink Reply by Beverly DeVergillo on July 26, 2008 at 1:38pm

Hi Jen,
I attached my word document that I keep with us at all times. It also lists the URL. Hope this helps. Beverly

Attachments:

• Anthony-Malignant Hyperthermia.doc, 41 KB

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Permalink Reply by Laurie Paschal on July 26, 2008 at 1:56pm

Beverly,
That's a great sheet. One question, I've heard that narcotics like codeine, morphine, etc, might not be safe. Have you (or anyone else) ever heard this?

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Permalink Reply by Christine Piacentino on July 27, 2008 at 10:30am

Hi Everyone,

I searched the old message board and found this information.

Here is a link to a page from their website that lists them: http://patients.mhaus.org/index.cfm/fuseaction/Content.Display/Page... estheticList.cfm

Duchenne patients should not be given
Halothane
Succinylcholine
Ancetine - Anectine is an anesthic that EMT's carry that is very similiar to Halothane.

This inhalation anesthics cause Malignant Hypothermia in Duchenne patients.

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Permalink Reply by Jenny Garofalo on July 27, 2008 at 11:00am

Thanks Bev and Christine!
I am sure this list will be so helpful tp new and old parents.

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Permalink Reply by Paul Johnson on August 1, 2008 at 8:02am

Here are a couple documents on the subject as well: http://www.parentprojectmd.org/site/DocServer/anaesthesia_2008.pdf?...

Anesthesia in Children With Muscular Dystrophy; Important Information for Your Son's Doctor:
http://www.parentprojectmd.org/site/PageServer?pagename=tc_anesthesia

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Permalink Reply by Erin Green on August 1, 2008 at 11:01pm

Does anyone know if these precautions should be taken for Becker's kids? We confirmed at the doctor today that my son does have Becker's, but no one ever mentioned this to me! Thanks

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Permalink Reply by Rebecca Saulsbury on August 2, 2008 at 2:55am

Hi Jenny,
My son had so-called "minor" surgery this summer so this is on the top of my mind.
My son's anesthesiaologist (poorly spelled) said it was important to make sure to schedule him 1st thing at the begining of the surgical day to make sure the slight chance of cross-contamination of medicines in the assorted tubings and machines (or whatever they use) is eliminated.
BTW carriers are supposed to use the same precautions (yes and medic alert too!)
Rebecca

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Permalink Reply by Samantha Dearing on August 2, 2008 at 12:10pm

We always have Justin scheduled first on the surgery schedule and we have them bleed ALL the lines before his surgery to make sure there is no possioblity of having cross contamination. Justin just had his 11th surgery of his life and we have had no issues so far.

--Samantha

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Permalink Reply by Christine Piacentino on August 8, 2008 at 10:56pm

Hi Erin,
Yes, it my understanding that these precautions should be taken for Becker's patients as well.

Erin Green said:

Does anyone know if these precautions should be taken for Becker's kids? We confirmed at the doctor today that my son does have Becker's, but no one ever mentioned this to me! Thanks

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