Subject: Re: polycitra/bictra

[Guest guest]

Hi,

I'm a little confused by Ruth and 's statements that you guys give

bicitra/polycitra for lactic acidosis. It is my understanding that these

will not do anything to lower lactic acid - will only increase the

bicarbonate, (serum CO2) in the body. This of course will give the body

less stress to deal with but in and of itself we have been told that there

is no primary treatment for LA . Our MD says that you can pour all the

bicarb in you want and all you'll do is give them a higher CO2 and they'll

pee out the rest but it still won't treat the lactic acidosis. And our

experience has shown exactly this.

Have you been told something different and are you actually seeing lower

lactic acid levels when you give the stuff than you were before?

Zach and Sam both have chronic as well as acute phases of LA. They get

something called acetate in an IV form which is the same as bicarbonate.

(bicitra and polycitra are bicarb plus some electrolytes I think). Anyway,

when they are in the midst of LA the acetate does nothing for them even if

it brings their CO2 to an acceptable level, (which is less stressful and

theoretically might prevent the LA from going higher I guess). Our

treatment has been to sit them in a room and minimize their energy demands

in any way they can.

Please share what you have been taught about LA and the above meds - I'd be

interested to hear if you have actually tracked a difference in lactic acid

levels with it.

Anne

[Guest guest]

Anne,

Lexi's neurologist told me specifically that he was starting her on bicitra

to treat lactic acidosis. the last time we went in her lactic levels were

high and so was her anion gap. so he started her on the bicitra. we haev

just had her labs drawn again this past week and we see dr stein again on

march 22. So I will have more info then on how much good it's really doing.

But from a NON clinical standpoint, i have definately seen an

improvement...she seizes less and has generally had more energy

hope this helps

ruth

[Guest guest]

hilandgang@... wrote:

> From: hilandgang@...

>

> Anne,

> Lexi's neurologist told me specifically that he was starting her on bicitra

> to treat lactic acidosis. the last time we went in her lactic levels were

> high and so was her anion gap. so he started her on the bicitra. we haev

> just had her labs drawn again this past week and we see dr stein again on

> march 22. So I will have more info then on how much good it's really doing.

> But from a NON clinical standpoint, i have definately seen an

> improvement...she seizes less and has generally had more energy

>

Ruth,

We saw Stein (actually just his PA, but this was only the first time that has

ever happened) last Tues.

and they calculated Jess' anion gap and said she was ok and still did not need

bicitra... do you know at

what point Stein tried this with Lexi. We had come off that nine day grand mal

spiral... and had gone ten

days without one by the time we got in to see them, but I'm still real curious

to know how often the test

results would have to be taken to give them an accurate knowledge of Jess

variances... Thanks for your

thoughts. Sharon

[Guest guest]

Ruth:

Would you be so kind as to tell me what Lexi's lactic acid level was

and also provide the normal range for me?

I'm just trying to figure out my son's levels and compare them to others.

His metabolic doctor said they were significantly high, but I always like

to take things a step further.

Clayton's was 51 with the normal range being 4.5-15.0 mg/dL

Thanks,

Beth

hilandgang@... wrote:

From: hilandgang@...

Anne,

Lexi's neurologist told me specifically that he was starting her

on bicitra

to treat lactic acidosis. the last time we went in her lactic

levels were

high and so was her anion gap. so he started her on the bicitra.

we haev

just had her labs drawn again this past week and we see dr stein

again on

march 22. So I will have more info then on how much good

it's really doing.

But from a NON clinical standpoint, i have definately seen an

improvement...she seizes less and has generally had more energy

hope this helps

ruth

Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

[Guest guest]

Sharon,

Her anion gap was 19 when he started her on bicitra, but the bloodwork was

about 4 weeks old at that time, and we have fought like crazy to keep her

acidosis under control during the past two years. He was actually very

willing to start her on bicitra and didn't give me any problems with it. I'm

not sure if it might be contra-indicated with some types of seizure

meds...maybe that's why he didn't start it? Don't know for sure....Lexi

isn't on any other seizure meds right now (he had her on Dilantin but she

could never absorb it so he took her off). Lexi sees him again in about 2

weeks so we will see what he wants us to do...will keep you posted.

ruth

(p.s.--where abouts are you? we are in lake forest)

[Guest guest]

Beth, her last lactic acid level was somewhere in the 70's i believe when we

started on the bicitra...i would need to dig out the paperwork as i don't

remember for sure....we see the doc again in a couple weeks so i will hvae up

to the minute reports then. I don't remember exactly what the range of

normal is...anyone else???? lexi also had elevated aldolase and gluteric

acid levels as well as her usual severe carnitine wasting (dont remember the

levels but only that her blood carnitine was almost nothing and her urine

carnitine was astornomically high)

ruth

[Guest guest]

ohhh wow! i can only hope and pray! we are getting desperate. i am going

to call her doc in the morning! thanks again!

ruth

[Guest guest]

hilandgang@... wrote:

> Lexi's neurologist told me specifically that he was starting her on bicitra

> to treat lactic acidosis. the last time we went in her lactic levels were

> high and so was her anion gap. so he started her on the bicitra.

Ruth,

When we increased Caitlin's polycitra just recently, I noticed an improvement in

her gut motility and was

just wondering if it was coincidence or if anyone else has noted improvement

when starting or increasing

bictra/polycitra.

Thanks,

Jeannine