diharrhea still after lowering Carnitor dose....

[Guest guest]

Im not sure what to make of this... has been on 1/4 the

carnitor he was originally on for 6 days now, and hes still got

seriously foul diharrhea...

his tempermant has improved ALOT since lowering the dose, so i dont

think its bothering his stomach as much, but were talking nuclear

disasters in his diaper...

hes on a really low dose now, and they didnt want me going any lower

than this...

any other suggestions for what to do about it?

Should i be calling the nurse again?

I hate guessing games...

Keely (mom to , 26 months, Complex 1 and all boy!)

[Guest guest]

Im not sure what to make of this... has been on 1/4 the

carnitor he was originally on for 6 days now, and hes still got

seriously foul diharrhea...

his tempermant has improved ALOT since lowering the dose, so i dont

think its bothering his stomach as much, but were talking nuclear

disasters in his diaper...

hes on a really low dose now, and they didnt want me going any lower

than this...

any other suggestions for what to do about it?

Should i be calling the nurse again?

I hate guessing games...

Keely (mom to , 26 months, Complex 1 and all boy!)

[Guest guest]

How many times a day is he on it? Have you tried breaking it up into

four divided doses? THat is what we had to do with 's becuase

she had explosive diarrhea.

Dawn

[Guest guest]

How many times a day is he on it? Have you tried breaking it up into

four divided doses? THat is what we had to do with 's becuase

she had explosive diarrhea.

Dawn

[Guest guest]

hes taking it 3 times a day right now... i make sure theres at

least 4 hours between doses, and he always has something to eat

right before and right afterwards...

>

> How many times a day is he on it? Have you tried breaking it up

into

> four divided doses? THat is what we had to do with 's

becuase

> she had explosive diarrhea.

>

> Dawn

[Guest guest]

hes taking it 3 times a day right now... i make sure theres at

least 4 hours between doses, and he always has something to eat

right before and right afterwards...

>

> How many times a day is he on it? Have you tried breaking it up

into

> four divided doses? THat is what we had to do with 's

becuase

> she had explosive diarrhea.

>

> Dawn

[Guest guest]

Sounds like it is not the Carnitine- sounds like has a bacterial problem.

Cindy-GA

Re: diharrhea still after lowering Carnitor dose....

hes taking it 3 times a day right now... i make sure theres at least 4 hours between doses, and he always has something to eat right before and right afterwards... > > How many times a day is he on it? Have you tried breaking it up into > four divided doses? THat is what we had to do with 's becuase > she had explosive diarrhea.> > Dawn

[Guest guest]

Sounds like it is not the Carnitine- sounds like has a bacterial problem.

Cindy-GA

Re: diharrhea still after lowering Carnitor dose....

hes taking it 3 times a day right now... i make sure theres at least 4 hours between doses, and he always has something to eat right before and right afterwards... > > How many times a day is he on it? Have you tried breaking it up into > four divided doses? THat is what we had to do with 's becuase > she had explosive diarrhea.> > Dawn

[Guest guest]

In the pharmacy leaflett we just got from Gracies latest refill, it stated to mix it into a drink and sip at it slowly to reduce stomach upset. This is how we have been doing it for a long time and we have never had any problems from doing so. Grace is always carrying around a sippy of milk so I just put her doses right in there when it is time.

I have no idea if this will help stop diarreah, but maybe its worth a try.

Best wishes

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[Guest guest]

In the pharmacy leaflett we just got from Gracies latest refill, it stated to mix it into a drink and sip at it slowly to reduce stomach upset. This is how we have been doing it for a long time and we have never had any problems from doing so. Grace is always carrying around a sippy of milk so I just put her doses right in there when it is time.

I have no idea if this will help stop diarreah, but maybe its worth a try.

Best wishes

Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE!

[Guest guest]

Have the docs considered the possibility of your child having a dumping

syndrome? Zipporrah does and the amazing thing we are seeing is that as we

INCREASE her Carnitor, the more formed her bowel movements become. Dr.

Whiteman said that Carnitor can help absorption of nutrients and thus slows

the motility down so the chronic diarrhea can actually be helped in some

kids like mine. You might want to discuss this issue with your docs.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

diharrhea still after lowering Carnitor dose....

>

>

> Im not sure what to make of this... has been on 1/4 the

> carnitor he was originally on for 6 days now, and hes still got

> seriously foul diharrhea...

> his tempermant has improved ALOT since lowering the dose, so i dont

> think its bothering his stomach as much, but were talking nuclear

> disasters in his diaper...

> hes on a really low dose now, and they didnt want me going any lower

> than this...

> any other suggestions for what to do about it?

> Should i be calling the nurse again?

>

> I hate guessing games...

>

> Keely (mom to , 26 months, Complex 1 and all boy!)

>

>

>

>

>

>

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

>

[Guest guest]

Have the docs considered the possibility of your child having a dumping

syndrome? Zipporrah does and the amazing thing we are seeing is that as we

INCREASE her Carnitor, the more formed her bowel movements become. Dr.

Whiteman said that Carnitor can help absorption of nutrients and thus slows

the motility down so the chronic diarrhea can actually be helped in some

kids like mine. You might want to discuss this issue with your docs.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

diharrhea still after lowering Carnitor dose....

>

>

> Im not sure what to make of this... has been on 1/4 the

> carnitor he was originally on for 6 days now, and hes still got

> seriously foul diharrhea...

> his tempermant has improved ALOT since lowering the dose, so i dont

> think its bothering his stomach as much, but were talking nuclear

> disasters in his diaper...

> hes on a really low dose now, and they didnt want me going any lower

> than this...

> any other suggestions for what to do about it?

> Should i be calling the nurse again?

>

> I hate guessing games...

>

> Keely (mom to , 26 months, Complex 1 and all boy!)

>

>

>

>

>

>

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

>

[Guest guest]

This hasnt been brought up... Im going to do some reading on it...

thanks Darla!

Keely

> Have the docs considered the possibility of your child having

a dumping

> syndrome? Zipporrah does and the amazing thing we are seeing is

that as we

> INCREASE her Carnitor, the more formed her bowel movements

become. Dr.

> Whiteman said that Carnitor can help absorption of nutrients and

thus slows

> the motility down so the chronic diarrhea can actually be helped

in some

> kids like mine. You might want to discuss this issue with your

docs.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome,

iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> diharrhea still after lowering Carnitor dose....

>

>

> >

> >

> > Im not sure what to make of this... has been on 1/4 the

> > carnitor he was originally on for 6 days now, and hes still got

> > seriously foul diharrhea...

> > his tempermant has improved ALOT since lowering the dose, so i

dont

> > think its bothering his stomach as much, but were talking nuclear

> > disasters in his diaper...

> > hes on a really low dose now, and they didnt want me going any

lower

> > than this...

> > any other suggestions for what to do about it?

> > Should i be calling the nurse again?

> >

> > I hate guessing games...

> >

> > Keely (mom to , 26 months, Complex 1 and all boy!)

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >

[Guest guest]

This hasnt been brought up... Im going to do some reading on it...

thanks Darla!

Keely

> Have the docs considered the possibility of your child having

a dumping

> syndrome? Zipporrah does and the amazing thing we are seeing is

that as we

> INCREASE her Carnitor, the more formed her bowel movements

become. Dr.

> Whiteman said that Carnitor can help absorption of nutrients and

thus slows

> the motility down so the chronic diarrhea can actually be helped

in some

> kids like mine. You might want to discuss this issue with your

docs.

>

> See www.caringbridge.org/ia/mitomomof9 and

www.heartbeatsformito.org to see

> a photo look into what Mito looks like

> Darla: mommy to

> Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-

tube,

> hypotonicity, disautonomy, SID, global delays, asthma, cyclic

vomiting,

> bladder issues, wheelchair for distances, eye issues, autistic

behaviors,

> gastric emptying issues...

> Zipporrah (14 months) Mito, strokes, neuro-motor planning dys.,

SID, GERD,

> dysphasia, 100% G-tube fed, speech delays, extreme fatigue,

excessive

> phlegm, asthma, trach issues, aberrant subclavian artery,

disautonomy,

> hypertonicity, migraines, possible seizures, dumping syndrome,

iron

> deficiency, ...

> Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia

(4), &

> Marquis (3), Joey & (12 months) (some with Mito symptoms)

>

>

> diharrhea still after lowering Carnitor dose....

>

>

> >

> >

> > Im not sure what to make of this... has been on 1/4 the

> > carnitor he was originally on for 6 days now, and hes still got

> > seriously foul diharrhea...

> > his tempermant has improved ALOT since lowering the dose, so i

dont

> > think its bothering his stomach as much, but were talking nuclear

> > disasters in his diaper...

> > hes on a really low dose now, and they didnt want me going any

lower

> > than this...

> > any other suggestions for what to do about it?

> > Should i be calling the nurse again?

> >

> > I hate guessing games...

> >

> > Keely (mom to , 26 months, Complex 1 and all boy!)

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

questions.

> >