Re: ? regarding Bicitra and low protein diet

[Guest guest]

Dena,

How much does he want you to give him? We were trying to give 5 teaspoons,

3 times a day. If it's a lot less then you might not have as hard of a time

giving it. It is really nasty tasting but is a bit more mature and

cooperative than Carl and might not be so difficult about it.

What we were doing was mixing it with caffeine free coke - orange juice

worked ok as well but I don't think would tolerate that much acid

with his reflux issues.

I do know of a girl a little older than who takes it orally by

itself, she just downs it really quickly, so you might give that a try

first.

Terri

>From: waislandgirl@...

>Reply-To: Mito

>To: mito

>Subject: ? regarding Bicitra and low protein diet

>Date: Wed, 5 Dec 2001 19:47:29 EST

>

>Hi all,

>Just heard from 's genetics doc and he and the biochemical/metabolic

>doc have diagnosed ketone utilization disorder for (based on organic

>acids, amino acid results). They are starting on Bicitra 2x daily

>(more when sick) and a low protein/high complex carb diet. We will meet

>with

>the dietician at the hospital, but wondered what info/advice you guys had

>about the Bicitra and the diet. I read just today that Terri said the

>Bicitra tastes nasty. Do any of your children take it without complaint

>(orally), and if so, how?

>

>Thanks!

>Dena, mom to , almost 11 (this month!!!), , 9 and na, 8

_________________________________________________________________

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[Guest guest]

wow...5 tsp. 3x/day...that is a lot! I think he said 5cc (1 tsp) twice a

day when is healthy, but adding 2 tsp. extra before exercise or when

is starting to get ill. He was giving me so much info on the phone

and my brain is mush (haven't been sleeping well with all this CPS stuff

going on), so I won't know for sure until our PCP writes the Rx in the next

few days. Why don't they do Bicitra in a tablet form?

Yep, can't tolerate orange juice or even simple sugars (too much)

because of his residual Dumping. So, this low protein, high carb diet will

be interesting. But, maybe in some of his favorite Diet pop or

something....or using the pop as a " chaser " ....or bribing him with his

favorite Pringles to take away the taste.

Thanks Terri!

Dena

[Guest guest]

My four-month old daughter takes bicitra three times a day. It was

terrible to try to get it into her at first, but since she has gotten

used to it she takes it pretty easily. She is too young for juice, but

our pediatrician said that when she gets older, we can mix it with some

juice to make it more palatable. I don't know if that is on your son's

diet, but it might be worth a try.

Good Luck!

Angie

> Hi all,

> Just heard from 's genetics doc and he and the biochemical/metabolic

> doc have diagnosed ketone utilization disorder for (based on organic

> acids, amino acid results). They are starting on Bicitra 2x daily

> (more when sick) and a low protein/high complex carb diet. We will meet with

> the dietician at the hospital, but wondered what info/advice you guys had

> about the Bicitra and the diet. I read just today that Terri said the

> Bicitra tastes nasty. Do any of your children take it without complaint

> (orally), and if so, how?

>

> Thanks!

> Dena, mom to , almost 11 (this month!!!), , 9 and

na, 8

[Guest guest]

Dena,

My son, was taking bicitra or polycitra for about 4 years. I

wanted to tell you about several things we found out.

Do not try to hide the flavor inside foods! We ended up in feeding

clinics for 's aversion to foods. He would take the bicitra or

polycitra and then throw up. Hidden inside foods he just learned to

avoid all foods.

There is a pill version of the polycitra/bicitra. 's

grandfather taught him to swallow the pill. Once he switched to the

pill many of our troubles were over!! The pill is enteric coated (is

coated so that is releases in the intestine instead of the stomach).

This meant that we did not have the upset stomach.

The poly citra is twice as strong as the bi citra so you don't have

to take as much. A big concern for us since 's highest dosage

was 24 teaspoons a day.

We also found a piece in the PDR (Physicians Desk Reference) that

said do not take the citras with calcium since there is a greater

risk of forming crystals in the kidneys. None of the doctors or

pharmacists we spoke to about the citras ever said anything about

this and were very suprised when we pointed that it was in the PDR.

Something else they do not mention is take the blood tests for how

well the stuff is working at the same time after a dose each time.

Since the stuff goes in it does a curve up then curve down. If you

don't test at about the same time each time you get whatever place on

the curve you are. (You can think you are making ground then be

shocked at the next testing)

The citras taste a lot like sweet and sour sauce. If they are very

cold there is not as much flavor. Having a glass of water/juice

right at hand to " wash it down " helped. Not too much since it made

him throw up very easily.

Some of the other people had luck covering the taste in chocolate

syrup.

Good luck

Twana

--info/advice you guys had about the Bicitra and the diet. I read

just today that Terri said the

> Bicitra tastes nasty. Do any of your children take it without

complaint

> (orally), and if so, how?

[Guest guest]

In a message dated 12/6/01 3:15:42 PM Pacific Standard Time,

sawyerjeannine@... writes:

<< It has done wonders for her, and once she started it, she was finally able

to put

on some weight as well as muscle. Before that, she was constantly wasted

looking

- (muscle wasted).

> >>

Wow....I read this to and he said " Whoopie....stronger muscles. I'll

take it no matter how bad it tastes. " :-)

That's my trooper!!!

Loving Mom Dena of almost 11 y/o , ketone utilization disorder and

dysautonomia, possible mito

[Guest guest]

In a message dated 12/6/01 5:28:08 PM Pacific Standard Time,

sawyerjeannine@... writes:

<< She used to spill ketones constantly, and was frequently

hospitalized in ketoacidosis. Now she spills them much less frequently.

>>

I'll ask the doc about it. The bicitra is used as a " buffering agent " ,

according to the geneticist, to buffer the acid in the blood. Ketone

utilization disorder is when the body does not break down proteins properly,

thus causing ketoacidosis (but with normal or low blood sugar). On organic

acid studies, 's 2 major ketone bodies were at 3,200 (normal less than

81) and 1,700 (normal less than 22) when was only marginally ill.

Dena

[Guest guest]

Dena,

Lexi has NEVER willingly taken Bicitra, but we have gotten really good at hiding it. We put it in all natural cherry apple cider and she drinks it that way. Also, if you mix it with a little 7-Up it's not so bad. She, too, has reflux and can't tolerate much acid. Also, I am having her other meds compounded together, all except for the Zantac and Bicitra so it's not seven different meds taken seperately.

hope this helps a little

ruth for the hilandgang

[Guest guest]

waislandgirl@... wrote:

> Do any of your children take it without complaint (orally), and if so, how?

My daughter does take it orally, and she says that it tastes pretty bad. We

usually mix it with carnitor, and she just drinks it right out of the little

measuring cup. We started out hiding it in something and she said that she

could

really taste it anyway, and said she would just as soon chug it. She's thirteen

and she's been taking it this way for about 4 years I think. We always have at

least 4 if not 8 ounces of something for her to drink afterward too.

It has done wonders for her, and once she started it, she was finally able to

put

on some weight as well as muscle. Before that, she was constantly wasted

looking

- (muscle wasted).

>

>

> Thanks!

> Dena, mom to , almost 11 (this month!!!), , 9 and na, 8

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

In a message dated 12/6/01 7:58:38 PM Pacific Standard Time,

hilandgang@... writes:

<< Also, if you mix it with a little 7-Up it's not so bad. >>

I'll try it with a bit of 7-up or diet 7-up. doesn't like really

sweet things, since he still has some residual dumping after this Dumping

Syndrome post fundoplication surgery a few years back. I talked with him

about it, and if he can have a few of his beloved Pringle chips to munch on

right after taking the Bicitra, he thinks he can tolerate it. I know he

hated the liquid Zantac he used to have to take, with it's sickenly sweet

peppermint flavor. This can't be too much worse!

Thanks for the advice,

Dena

[Guest guest]

waislandgirl@... wrote:

> Loving Mom Dena of almost 11 y/o , ketone utilization disorder and

> dysautonomia, possible mito

Dena, I've not ever heard of a ketone utilization disorder, and found it

interesting that they would prescribe the bictra for that. My daughters have a

problem with spilling ketones, and my youngest has responded quite well to the

addition of biotin. It was explained to me that the biotin allows her to

utilize

the ketones instead of wasting them or spilling them. Has anyone suggested that

for your son. The biotin is probably the one other thing that has really had a

profound impact. She used to spill ketones constantly, and was frequently

hospitalized in ketoacidosis. Now she spills them much less frequently.

Jeannine