leighs disease and anesthetics

[Guest guest]

I have a 20 month old son diagnosed with Leigh's disease. He goes in

next week for a Nessan funiplication? and a feeding tube, it is my

understanding some anesthetics are worse than others for these

children. Do you know which ones are the worst? Thank you.

[Guest guest]

There are many others with much more knowlege on this than me. My daughter has had all of her surgery's at Cleveland Clinic. There protocall for mito pts. is NO Versed or Propofall (sp?). I know others have discussed other problem medications. This standard has been used for Grace and she has never had any problems.

Best wishes.

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[Guest guest]

Why "NO versed"? I am very curious as versed caused my son to have a bad reaction by becoming stiff, rolling eyes, screaming fits that he did not even realize he was doing it...and having a hard time breaking out of it. What is the reason..I am really interested!!

Donna

mito mom to 5 mito kids

RE: leighs disease and anesthetics

There are many others with much more knowlege on this than me. My daughter has had all of her surgery's at Cleveland Clinic. There protocall for mito pts. is NO Versed or Propofall (sp?). I know others have discussed other problem medications. This standard has been used for Grace and she has never had any problems.

Best wishes.

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[Guest guest]

Emma has had reactions to both versed and propofal

Versed: Her heart rate went thru the roof.

Propofal: For being a fast acting anesthesia, it took Emma 3 days to completley come back to her normal self.

RE: leighs disease and anesthetics

There are many others with much more knowlege on this than me. My daughter has had all of her surgery's at Cleveland Clinic. There protocall for mito pts. is NO Versed or Propofall (sp?). I know others have discussed other problem medications. This standard has been used for Grace and she has never had any problems.

Best wishes.

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[Guest guest]

From what I know it takes a long time for Versed to get out of the system. With a mito pt. it tends to make them sedated for a very long time. What you described with your son, sounds like the reaction they try to avoid. Granted, Grace was given Versed on a few occasions before her mito diagnosis with no ill side effects, other than being tired a little longer than normal. We just now stick to the protocall anyways to be safe.

I hope this helps.

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[Guest guest]

he was sedated for a very long time, but instead of coming out of it calm, he had a very bad time coming out of it.

one of my kids cannot take any sedatives at all because of hallucinating/paradoxyl reactions with them...we just have so much fun with any procedures!

Re: leighs disease and anesthetics

From what I know it takes a long time for Versed to get out of the system. With a mito pt. it tends to make them sedated for a very long time. What you described with your son, sounds like the reaction they try to avoid. Granted, Grace was given Versed on a few occasions before her mito diagnosis with no ill side effects, other than being tired a little longer than normal. We just now stick to the protocall anyways to be safe.

I hope this helps.

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[Guest guest]

I was curious what type of sedatives are recommended for kids with

mito. Sophie has to have and MRI next month. Are there drugs that

are a definite NO-NO? She's had general anesthesia and sedation with

chloral hydrate with no problems that I know of. She was out of it

for almost 4 days after general anesthesia in ICU though. That was

after her nissen. Any advice or guidance on where I can find info to

give to the sedation team at my local hosp. I'm not sure how

familiar they will be with Mito.

Meagan Ochsner

> he was sedated for a very long time, but instead of coming out of

it calm, he had a very bad time coming out of it.

> one of my kids cannot take any sedatives at all because of

hallucinating/paradoxyl reactions with them...we just have so much

fun with any procedures!

> Re: leighs disease and anesthetics

>

>

> From what I know it takes a long time for Versed to get out of

the system. With a mito pt. it tends to make them sedated for a very

long time. What you described with your son, sounds like the

reaction they try to avoid. Granted, Grace was given Versed on a few

occasions before her mito diagnosis with no ill side effects, other

than being tired a little longer than normal. We just now stick to

the protocall anyways to be safe.

>

> I hope this helps.

>

>

>

>

>

>

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> With MSN Spaces email straight to your blog. Upload jokes, photos

and more. It's free!

>

> Please contact mito-owner with any problems or

questions.

>

>

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