Re: Need advice on blood tests

[Guest guest]

Kim

I'm sorry to hear that your son has had such a terrible time and that

his mito is worse. This is not unusual after what he has been through.

You might want to have kidney and liver function tests and

electrolytes, including magnesium drawn. This is just from my own

experience - the doc might be the best one to determine what needs to

be done. Does your son take Lamictal, Neurontin or another

anti-convulsant? Lamictal has really helped reduce my myoclonus.

laurie

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> Hello everyone. My 21 year old son has MERRF. In April he spent 15

> days in the hospital with complications from pneumonia (the docs at

> Hershey Med think he may have aspirated after a seizure). He had a

> pleural effusion and required a chest tube and a drain in his back.

> He was on morphine for the pain, IV antiobiotics for the 15 days and

> for 3 weeks at home. Needless to say, this ordeal has been terribly

> taxing on his body. He's been out of the hospital for about a month

> and although the lung problems have cleared his other mito symptoms

> have been terrible. His myclonus has been so bad he can barely eat on

> his own, his legs are like cooked spaghetti and his whole body shakes

> when trying to sit or stand (he also lost more hearing). We see the

> neuro on Tuesday and I am going to ask him to order some rehab to get

> some muscle strength back but I would also like him to do some blood

> work.

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> All of you have so much knowledge regarding mito and I was wondering

> what blood levels would you think he should have tested. I think

> lactic acid but have no clue otherwise. Walter's never been this

> sick. I'm sure the neuro will consult with the MDA doc at Hershey but

> I'd like some advice from this group also. Thanks.

>

> Kim in Pennsylvania

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>

[Guest guest]

The labs commonly ordered during a crisis include: quantative plasma and urine

amino acids and organic acids, lactate, pyruvate, ammonia, liver panel and

mineral panel (calcium, magnesium,selenium) and possibly electrolytes.

gabby244 gabby244@...> wrote: Hello

everyone. My 21 year old son has MERRF. In April he spent 15

days in the hospital with complications from pneumonia (the docs at

Hershey Med think he may have aspirated after a seizure). He had a

pleural effusion and required a chest tube and a drain in his back.

He was on morphine for the pain, IV antiobiotics for the 15 days and

for 3 weeks at home. Needless to say, this ordeal has been terribly

taxing on his body. He's been out of the hospital for about a month

and although the lung problems have cleared his other mito symptoms

have been terrible. His myclonus has been so bad he can barely eat on

his own, his legs are like cooked spaghetti and his whole body shakes

when trying to sit or stand (he also lost more hearing). We see the

neuro on Tuesday and I am going to ask him to order some rehab to get

some muscle strength back but I would also like him to do some blood

work.

All of you have so much knowledge regarding mito and I was wondering

what blood levels would you think he should have tested. I think

lactic acid but have no clue otherwise. Walter's never been this

sick. I'm sure the neuro will consult with the MDA doc at Hershey but

I'd like some advice from this group also. Thanks.

Kim in Pennsylvania

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris