Re: Injectible mito cocktail?--Heidi et. all

May 3, 2005

Hi Heidi,

Please forgive my ignorance on this, I am totally new to it.

Was the Carnitor IV something had to go to the hospital for and how

long is the IV in? Does it have to stay in, or is this an injection?

Was it hard to get on IV nutrition? Did the doc give a hard time,

or was it just 'ordered' for you?

I agree that IV or injection would help, as my digestion is no good at all!

Funny, when I asked one of my neuro's about IV cocktail, he said he didn't

know anything about this, even though he treats patients with this disease

all the time! Ugh! Fortunately, I have a good doc who does a lot with IV's

but is far away. I will have to go to him if worse comes to worse, which it

looks like it is.

Thank you for the inf.

God bless,

Hazelpone

----- Original Message -----

> - gets carnitor, ascorbic acid, thiamine, zinc, and selenium

> in her TPN. During the incredibly brief times she was off TPN she

> continued to get the carnitor IV. CoQ10, vitamin E, and riboflavin

> have always been enteral. If you're carnitine deficient and not

> absorbing it enterally and then get it IV it's an amazing kick. That

> might actually help you do better with other things in the cocktail,

> just by changing the carnitine to IV.

> Heidi

>

May 4, 2005

In a message dated 5/3/2005 11:52:50 PM Eastern Standard Time,

hpone00@... writes:

Was the Carnitor IV something had to go to the hospital for and how

long is the IV in? Does it have to stay in, or is this an injection?

Was it hard to get on IV nutrition? Did the doc give a hard time,

or was it just 'ordered' for you?

Hi Hazelpone,

Heidi ('s mom) was admitted to the hospital yesterday to get her

blood sugars under control. I know this isn't addressed to me, but since I'm on

TPN (IV nutrition) too, I'll answer from my experiences.

I also get IV carnitor in my TPN. They put it in as an additive and it is

infused along with everything else that's in the TPN. I don't have to add it. It

could be added in a regular bag of fluids though and could probably be

infused over a couple of hours. Each person's TPN is customized specifically to

their needs.

I started on TPN 11 yrs ago. I was really malnourished and was getting

dehydrated all the time. My mom actually had to initially persuade my GI doctor

to

give it to me--he was willing to just sit back and watch me get sicker. But,

TPN has really given me energy and the ability to live my life all these

years. If your GI tract can work and you can tolerate feedings through a tube,

that's the best way to go, but if not, TPN can be a blessing.

Malisa

May 4, 2005

I'm sorry to hear about Heidi being admitted, but hopefully they'll

get those sugars under control and find out why she is having such a

problem with them.

On a nutrition/diet note, does Dr. K's office have a nutritionist

associated with it? That was one thing I liked about the local

genetics/metabolics place - the nutritionist sounded like she was

VERY communicative with patients, and was often in contact with them

on a weekly basis. One point the nurse brought up was that maybe I

need 60 g of protein per day, but 40 g might be too little and 80 g

might be too much. My diet has a big effect on how I feel, but so

far I've just found out " carbs bad " " protein good " and fat seems okay

too.

I think I've asked about nutritionists in general being available for

metabolic conditions, but I never thought about them operating in

concert with a metabolics/genetics doctor.

Take care,

RH

>

> In a message dated 5/3/2005 11:52:50 PM Eastern Standard Time,

> hpone00@s... writes:

>

> Was the Carnitor IV something had to go to the hospital

for and how

> long is the IV in? Does it have to stay in, or is this an

injection?

>

> Was it hard to get on IV nutrition? Did the doc give a

hard time,

> or was it just 'ordered' for you?

>

> Hi Hazelpone,

> Heidi ('s mom) was admitted to the hospital yesterday to get

her

> blood sugars under control. I know this isn't addressed to me, but

since I'm on

> TPN (IV nutrition) too, I'll answer from my experiences.

>

> I also get IV carnitor in my TPN. They put it in as an additive and

it is

> infused along with everything else that's in the TPN. I don't have

to add it. It

> could be added in a regular bag of fluids though and could

probably be

> infused over a couple of hours. Each person's TPN is customized

specifically to

> their needs.

>

> I started on TPN 11 yrs ago. I was really malnourished and was

getting

> dehydrated all the time. My mom actually had to initially persuade

my GI doctor to

> give it to me--he was willing to just sit back and watch me get

sicker. But,

> TPN has really given me energy and the ability to live my life all

these

> years. If your GI tract can work and you can tolerate feedings

through a tube,

> that's the best way to go, but if not, TPN can be a blessing.

> Malisa

>

May 4, 2005

In a message dated 5/4/2005 1:38:29 PM Eastern Standard Time,

rakshasis@... writes:

On a nutrition/diet note, does Dr. K's office have a nutritionist

associated with it?

Hi RH,

Dr K's office does have a dietician associated with them. She doesn't do too

much with the mito patients, though. She works more closely with the PKU

population. I would think if you had a dietary question that she would be able

to help though. There are also two very good nurses that work in the office

and they are both very helpful and good at connecting people with the

resources that they need.

Malisa

May 4, 2005

In a message dated 5/4/2005 1:38:29 PM Eastern Standard Time,

rakshasis@... writes:

On a nutrition/diet note, does Dr. K's office have a nutritionist

associated with it?

Hi RH,

Dr K's office does have a dietician associated with them. She doesn't do too

much with the mito patients, though. She works more closely with the PKU

population. I would think if you had a dietary question that she would be able

to help though. There are also two very good nurses that work in the office

and they are both very helpful and good at connecting people with the

resources that they need.

Malisa

May 4, 2005

Malisa, thanks for your answers - maybe a nurse would be a more

likely person to address my concerns. I am so hoping they find some

obvious UCD where I could just take some amino acid supplement and

poof! my ammonia problems go away, but I know that is way unrealistic.

One of the bases for my high protein, high fat, low carb diet is the

ketogenic diet for people with epilepsy. Although my EEG didn't show

epilepsy, I did have some " slow waves " which were abnormal (when

awake they are a sign of fatigue) but of unknown significance

medically.

This is an interesting note on epilepsy and mito:

http://www.epilepsy.com/epilepsy/epilespy_mitochondrial_disease.html

Turns out the UMDF site mentions a ketogenic diet as a possible

treatment for Complex I deficiency:

http://www.umdf.org/mitodisease/descriptions.html#Complex1

so maybe I'm on the right track. For other mito conditions, high fat

is a no-no (as one can see from other stuff on the umdf page).

Thanks,

RH

>

> In a message dated 5/4/2005 1:38:29 PM Eastern Standard Time,

> rakshasis@e... writes:

>

> On a nutrition/diet note, does Dr. K's office have a nutritionist

> associated with it?

>

> Hi RH,

> Dr K's office does have a dietician associated with them. She

doesn't do too

> much with the mito patients, though. She works more closely with

the PKU

> population. I would think if you had a dietary question that she

would be able

> to help though. There are also two very good nurses that work in

the office

> and they are both very helpful and good at connecting people with

the

> resources that they need.

> Malisa

>

May 4, 2005