CVS? OK Robyn He's puking again

[Guest guest]

Hey Robyn,

Well, he's having another 'spell'.  (Hey Dr - I'll send you an update

too - sorry.)

He missed last month - thanksgiving weekend - was when he was 'due' for another

vomit and Big D episode.  This time, it would be 5 days late if he hadn't missed

the last one.

Did you see a variation in the cycles once in a while?

The week of Thanksgiving, when he didn't have a V & S episode (and they last from

Friday night to Sunday afternoon and then he's just fine), there were two

differences:  he didn't have school and very little physical activity that week

(involving running or walking any major distances like PE or the halls at

school), and one particular food (crackers and lunch meat ham).  This week, he

didn't have school either, but he did run and play with some kids outside at his

grandmother's house till he wore out (doesn't take that long). 

His face turns white, his pupils dilate, then he goes to the restroom, gets a

funny feeling, and asks for a bowl.  He throws up 2 or 3 times, then he's fine. 

But we can't ride in a car...

I guess I'm going to have to start dragging him to the pediatrician every time -

I haven't the last few times, mainly because they're far, and the car sickness

makes him so miserable, and I know it's going to pass.  But I'm torn, because

there's flu & strep all over & I don't want to take him and him get something

else.

So I was wondering - did migraine meds ever help CVS?  Would it be worth going

if the pediatrician gave him a trial of migraine meds to see if it helped?  His

is nowhere near what your son had - it's really too mild to be called CVS from

what I read, but I suspect that could be because he's on the meds.  (Hmmm -

I need to see when he started Effexor... there's a thought - but he does so well

on that.) 

Oh well - just wondering and wanting to compare notes.

[Guest guest]

Hi, . I'm so sorry your son is going through this. It sounds so much like

CVS, especially the pupil dilation. What we found with Noah is that any time he

was stressed, it could trigger an episode. He would do exactly what you

describe--run into the bathroom or ask for a bucket. The only difference is that

Noah would experience migraines before and after each event. The cycles can vary

in length and duration. Noah used Imitrex nasal spray for the migraines, but

they never aborted a vomiting episode. Zofran didn't work, but I would suggest

looking into it.

CVS, like seizures, can vary in intensity. Some people only cycle once or twice

a year and some every week. Noah's vomiting episodes were quite violent, but he

did have some mild episodes as well. I know one girl who has CVS and she trows

up every week but only a teaspoon or two at a time. Zofran really made a

difference for her, but stress is a huge trigger. She had to be home schooled.

I really believe that the antivirals made a huge difference for Noah. The

decrease in HHV6 corresponded with improvement in his CVS. Now, he has been

symptom free for nearly three years.

You may want to see a neurologist or see if Dr. will prescribe Zofran.

I hope this helps. Please keep me posted.

All the best,

Robyn

From: <thecolemans4@...>

Subject: CVS? OK Robyn He's puking again

" " < >

Date: Wednesday, December 22, 2010, 8:36 PM

 

Hey Robyn,

Well, he's having another 'spell'.  (Hey Dr - I'll send you an update

too - sorry.)

He missed last month - thanksgiving weekend - was when he was 'due' for another

vomit and Big D episode.  This time, it would be 5 days late if he hadn't

missed

the last one.

Did you see a variation in the cycles once in a while?

The week of Thanksgiving, when he didn't have a V & S episode (and they last from

Friday night to Sunday afternoon and then he's just fine), there were two

differences:  he didn't have school and very little physical activity that week

(involving running or walking any major distances like PE or the halls at

school), and one particular food (crackers and lunch meat ham).  This week, he

didn't have school either, but he did run and play with some kids outside at his

grandmother's house till he wore out (doesn't take that long). 

His face turns white, his pupils dilate, then he goes to the restroom, gets a

funny feeling, and asks for a bowl.  He throws up 2 or 3 times, then he's

fine. 

But we can't ride in a car...

I guess I'm going to have to start dragging him to the pediatrician every time -

I haven't the last few times, mainly because they're far, and the car sickness

makes him so miserable, and I know it's going to pass.  But I'm torn, because

there's flu & strep all over & I don't want to take him and him get something

else.

So I was wondering - did migraine meds ever help CVS?  Would it be worth going

if the pediatrician gave him a trial of migraine meds to see if it helped?  His

is nowhere near what your son had - it's really too mild to be called CVS from

what I read, but I suspect that could be because he's on the meds. 

(Hmmm -

I need to see when he started Effexor... there's a thought - but he does so well

on that.) 

Oh well - just wondering and wanting to compare notes.

[Guest guest]

My son also has this. Dr. Li out of Milwaukee is an expert on it. Here is

a link to some info.

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

The CVSonline link is a partucularily good one. One thing that has helped

our son in a higher dose 2.5ml 2x a day of CoQ10. You can order from

epic4health and they will give you a discount if it is for CVS. Zofran is a

life saver for us. Imitrex is good if you know an episode is coming.

Robyn, maybe we should try the protocal. The CVS does decrease over

time, but often will manifest itself in the form of migranes later on.

Pat

CVS? OK Robyn He's puking again

" " < >

Date: Wednesday, December 22, 2010, 8:36 PM

Hey Robyn,

Well, he's having another 'spell'. (Hey Dr - I'll send you an update

too - sorry.)

He missed last month - thanksgiving weekend - was when he was 'due' for

another

vomit and Big D episode. This time, it would be 5 days late if he hadn't

missed

the last one.

Did you see a variation in the cycles once in a while?

The week of Thanksgiving, when he didn't have a V & S episode (and they last

from

Friday night to Sunday afternoon and then he's just fine), there were two

differences: he didn't have school and very little physical activity that

week

(involving running or walking any major distances like PE or the halls at

school), and one particular food (crackers and lunch meat ham). This week,

he

didn't have school either, but he did run and play with some kids outside at

his

grandmother's house till he wore out (doesn't take that long).

His face turns white, his pupils dilate, then he goes to the restroom, gets

a

funny feeling, and asks for a bowl. He throws up 2 or 3 times, then he's

fine.

But we can't ride in a car...

I guess I'm going to have to start dragging him to the pediatrician every

time -

I haven't the last few times, mainly because they're far, and the car

sickness

makes him so miserable, and I know it's going to pass. But I'm torn, because

there's flu & strep all over & I don't want to take him and him get

something

else.

So I was wondering - did migraine meds ever help CVS? Would it be worth

going

if the pediatrician gave him a trial of migraine meds to see if it helped?

His

is nowhere near what your son had - it's really too mild to be called CVS

from

what I read, but I suspect that could be because he's on the meds.

(Hmmm -

I need to see when he started Effexor... there's a thought - but he does so

well

on that.)

Oh well - just wondering and wanting to compare notes.

[Guest guest]

Whoa ... it's been 3 years?? Feels like last year ... where's the time going?

lol

________________________________

From: Robyn & Greg Coggins <rngcoggs@...>

Sent: Thu, December 23, 2010 12:09:47 AM

Subject: Re: CVS? OK Robyn He's puking again

 

Hi, . I'm so sorry your son is going through this. It sounds so much like

CVS, especially the pupil dilation. What we found with Noah is that any time he

was stressed, it could trigger an episode. He would do exactly what you

describe--run into the bathroom or ask for a bucket. The only difference is that

Noah would experience migraines before and after each event. The cycles can vary

in length and duration. Noah used Imitrex nasal spray for the migraines, but

they never aborted a vomiting episode. Zofran didn't work, but I would suggest

looking into it.

CVS, like seizures, can vary in intensity. Some people only cycle once or twice

a year and some every week. Noah's vomiting episodes were quite violent, but he

did have some mild episodes as well. I know one girl who has CVS and she trows

up every week but only a teaspoon or two at a time. Zofran really made a

difference for her, but stress is a huge trigger. She had to be home schooled.

I really believe that the antivirals made a huge difference for Noah. The

decrease in HHV6 corresponded with improvement in his CVS. Now, he has been

symptom free for nearly three years.

You may want to see a neurologist or see if Dr. will prescribe Zofran.

I hope this helps. Please keep me posted.

All the best,

Robyn

From: <thecolemans4@...>

Subject: CVS? OK Robyn He's puking again

" " < >

Date: Wednesday, December 22, 2010, 8:36 PM

 

Hey Robyn,

Well, he's having another 'spell'.  (Hey Dr - I'll send you an update

too - sorry.)

He missed last month - thanksgiving weekend - was when he was 'due' for another

vomit and Big D episode.  This time, it would be 5 days late if he hadn't

missed

the last one.

Did you see a variation in the cycles once in a while?

The week of Thanksgiving, when he didn't have a V & S episode (and they last from

Friday night to Sunday afternoon and then he's just fine), there were two

differences:  he didn't have school and very little physical activity that week

(involving running or walking any major distances like PE or the halls at

school), and one particular food (crackers and lunch meat ham).  This week, he

didn't have school either, but he did run and play with some kids outside at his

grandmother's house till he wore out (doesn't take that long). 

His face turns white, his pupils dilate, then he goes to the restroom, gets a

funny feeling, and asks for a bowl.  He throws up 2 or 3 times, then he's

fine. 

But we can't ride in a car...

I guess I'm going to have to start dragging him to the pediatrician every time -

I haven't the last few times, mainly because they're far, and the car sickness

makes him so miserable, and I know it's going to pass.  But I'm torn, because

there's flu & strep all over & I don't want to take him and him get something

else.

So I was wondering - did migraine meds ever help CVS?  Would it be worth going

if the pediatrician gave him a trial of migraine meds to see if it helped?  His

is nowhere near what your son had - it's really too mild to be called CVS from

what I read, but I suspect that could be because he's on the meds. 

(Hmmm -

I need to see when he started Effexor... there's a thought - but he does so well

on that.) 

Oh well - just wondering and wanting to compare notes.

[Guest guest]

Hey Pat -

Wow.... when he missed his first cycle last month, I had just started giving

them CoQ10 not long before.  I forgot to give it this week...   And so far

it's

still been pretty mild - and he mostly can't ride in a car or run around  -

otherwise he's fine.

Hmmmmm....

Will watch this one (connection to CoQ10) very carefully.  Better run and give

him one this morning.  I was actually gonna skip it just to not make anything

worse.

Not sure what is meant about the dose in mls ... I'm giving a 50mg cap - he's 9

but only about 60 lbs - once a day because I can't remember if Dr said

once or twice per day & can't remember to email him to ask.

What does Zofran do?  (Guess I could google that) I know I wouldn't give

phenergan - I'd rather have nausea & vomiting is better than take that...

Thanks,

________________________________

From: Fulton <PFulton@...>

Sent: Thu, December 23, 2010 9:22:19 AM

Subject: Re: CVS? OK Robyn He's puking again

 

My son also has this. Dr. Li out of Milwaukee is an expert on it. Here is

a link to some info.

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

The CVSonline link is a partucularily good one. One thing that has helped

our son in a higher dose 2.5ml 2x a day of CoQ10. You can order from

epic4health and they will give you a discount if it is for CVS. Zofran is a

life saver for us. Imitrex is good if you know an episode is coming.

Robyn, maybe we should try the protocal. The CVS does decrease over

time, but often will manifest itself in the form of migranes later on.

Pat

CVS? OK Robyn He's puking again

" " < >

Date: Wednesday, December 22, 2010, 8:36 PM

Hey Robyn,

Well, he's having another 'spell'. (Hey Dr - I'll send you an update

too - sorry.)

He missed last month - thanksgiving weekend - was when he was 'due' for

another

vomit and Big D episode. This time, it would be 5 days late if he hadn't

missed

the last one.

Did you see a variation in the cycles once in a while?

The week of Thanksgiving, when he didn't have a V & S episode (and they last

from

Friday night to Sunday afternoon and then he's just fine), there were two

differences: he didn't have school and very little physical activity that

week

(involving running or walking any major distances like PE or the halls at

school), and one particular food (crackers and lunch meat ham). This week,

he

didn't have school either, but he did run and play with some kids outside at

his

grandmother's house till he wore out (doesn't take that long).

His face turns white, his pupils dilate, then he goes to the restroom, gets

a

funny feeling, and asks for a bowl. He throws up 2 or 3 times, then he's

fine.

But we can't ride in a car...

I guess I'm going to have to start dragging him to the pediatrician every

time -

I haven't the last few times, mainly because they're far, and the car

sickness

makes him so miserable, and I know it's going to pass. But I'm torn, because

there's flu & strep all over & I don't want to take him and him get

something

else.

So I was wondering - did migraine meds ever help CVS? Would it be worth

going

if the pediatrician gave him a trial of migraine meds to see if it helped?

His

is nowhere near what your son had - it's really too mild to be called CVS

from

what I read, but I suspect that could be because he's on the meds.

(Hmmm -

I need to see when he started Effexor... there's a thought - but he does so

well

on that.)

Oh well - just wondering and wanting to compare notes.