I know that with MD there are certain anesthesias that our kids cannot have? Neel is 2 and is going to undergo a MRI in Oct. I had a consult with the anesthesiologist and he said they are going to first give him a med called Versed (liquid form) as a premed. This will be followed by an inhalational agent sevoflurane. And then the anesthesia they will give him will either be propofol or dexmetatomidine. He said these are fairly new. Has anyone else gone through this before or used these meds? Any thoughts would be appreciated.

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Kulwant,

Here is information from the PPMD site regarding this issue. http://www.parentprojectmd.org/site/PageServer?pagename=caring_phys...

General anesthesia is never without risks, but our boys are at a higher risk for Malignant Hyperthermia because of DMD. Sevoflurane is listed as one of the unsafe forms of inhaled general anesthesia. For a list of the safe and unsafe forms you can review them here: http://patients.mhaus.org/index.cfm/fuseaction/Content.Display/Page...

My experience last summer was that the person that is scheduling these procedures has little experience/no knowledge of the risks of MH and will tell us everything is fine. I pushed this issue last summer for a procedure that Cole was having done and demanded to speak with the lead anesthesiologist at the out-patient center and after some convincing he looked up this information and referred us to the children's hospital to have the MRI done for Cole. Fortunately when I spoke with the anesthesiologist that was assigned to Cole's case from the hospital he was well versed in the risks and ensured all precautions were taken to prevent MH.

Propofol is considered safe and is the IV anesthetic that was used on Cole last summer. I'm not familiar with dexmetatomidine. Are you sure they didn't mean "dexmedetomidine" which is an IV sedative?
Kulwant,

My son had versed when he had a muscle biopsy a few years back. Dr. Flanigan from Utah used versed. Dr. Flanigan is a researcher/doctor with dmd and very informed on the subject matter. The versed helped Nick to relax. The muscle biopsy was done to learn more about his mutation. Most mutations biopsies are no longer needed.

Julie

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