Re: Anyone experienced this???

[Guest guest]

Dear Vicki,

It sounds like it could be Cyclic Vomiting Syndrome. I don't know though. It's so hard to diagnose. There is a message board and website for CVS at

http://www.cvsaonline.org

Please go there and read the wonderful information they have. There is a doctor in Los Angeles, Dr. Boles, who is working with patients from around the world who have CVS and Mito. He has written some wonderful papers and there is at least one on the CVS website for you to read.

In our personal experience with our son who is five now, but started symptoms when he was 13months, when he starts vomiting, he won't hold anything down most of the time. That depends on the severity of the episode and the trigger. You're blessed that your son is holding down at least Pedialyte. That will hopefully keep him from getting dehydrated. That is the big problem with our son. Once the vomiting begins, the dehydration sends him to the hospital immediately for IV hydration. We just got out of the hospital on Sunday as a matter of fact from an episode. He was in the heat too long, and by the end of the night had an abdominal migraine, which caused some vicious vomiting. Ugh! Our son is not diagnosed with any Mito disease yet, but he shows so many symptoms that it's undeniable. I just have to find doctors that aren't so wishy-washy, who are willing to diagnose him or do the appropriate testing.

Sorry to veer off track there, but I just wanted to tell you also that when you see the ped this afternoon, go ahead and mention CVS and see what they say. Most likely they have never heard of it, or have little to no experience with it, but it's worth a shot. Then start your own research of Mito and CVS, and see if you recognize any of the signs in your son. If it doesn't confirm it in your mind, then you can go another direction.

Hope this helped some. Feel free to ask more questions.

e *Ü*

Anyone experienced this???

Hello everyone. My name is Vicki and I posted a while back right after our neurologist told us that my son Caden might have mito. I received lots of supportive responses. Since then, I have mostly been lurking and trying to learn about this disease. We are not sure if he does in fact have mito, but I was wondering if someone might help me with what has been going on with Caden this weekend....All was fine Saturday, then Sunday morning he was burning up. His fever actually only got up to 101, but it was our first fever ever. We gave him Tylenol and it gradually came down all day. Only thing was, he couldn't keep any formula down. He would eat fine then about 30 min. to an hour later, it would all come back up, projectile. Now, Caden has had severe GERD since he came, so we really didn't think much about it, but his reflux had been so much better lately. He hasn't been throwing up like this since he was first diagnosed with reflux. But it was only his formula. Pedialyte, juice, and cereal stayed down fine. Now, yesterday he had no fever all day but was very groggy and lethargic in the AM. He still couldn't keep his formula down, but was still doing fine with pedilyte and juice. We called the pedi on call and he seemed to think that we were doing all the right things as long as he was keeping down some liquids and didn't have diahrrea. So we went about our day and just fed him cereal and juices. So I stayed home with him today and gave him 4 oz. of formula this morning hopeing that he hust had a "bug" and it was over. Well, nope! It stayed down about 30 min. then came back up all over both of us. We have an appt. with our pedi this afternoon, but I was wondering if anyone had experienced this with mito. I know some people have talked about cyclic vomiting, but I don't know what that is. I have horrible visions of a feeding tube in our future, but maybe I am overreacting. Please help if you can. Thanks so much!Oh yes, we use the ready to feed formula, so I thought maybe we got a bad bottle, so I threw out that one and tried a new one this morning, but it didn't help. Pedialyte stayed down again this morning. ????????????Vicki~ proud mom to Caden, 11 mo. possible mito

[Guest guest]

Okay, I read a little about CVS, but could it be CVS if he is only doing it

after a bottle of formula? He hasn't lost any of his baby food or juice or

pedialyte in the past 3 days. Anyone know? I know our pedi is going to be

baffled when I ask about CVS, but maybe he will know something. The part of CVS

where they are fine between episodes sounds like what we are experiencing, but I

have no idea. Thanks for any help!!

Vicki

----- Anyone experienced this???

>

>

>

> Hello everyone. My name is Vicki and I posted a while back right

> after our neurologist told us that my son Caden might have mito. I

> received lots of supportive responses. Since then, I have mostly

> been lurking and trying to learn about this disease. We are not

> sure if he does in fact have mito, but I was wondering if someone

> might help me with what has been going on with Caden this weekend....

>

> All was fine Saturday, then Sunday morning he was burning up. His

> fever actually only got up to 101, but it was our first fever ever.

> We gave him Tylenol and it gradually came down all day. Only thing

> was, he couldn't keep any formula down. He would eat fine then

> about 30 min. to an hour later, it would all come back up,

> projectile. Now, Caden has had severe GERD since he came, so we

> really didn't think much about it, but his reflux had been so much

> better lately. He hasn't been throwing up like this since he was

> first diagnosed with reflux. But it was only his formula.

> Pedialyte, juice, and cereal stayed down fine. Now, yesterday he

> had no fever all day but was very groggy and lethargic in the AM.

> He still couldn't keep his formula down, but was still doing fine

> with pedilyte and juice. We called the pedi on call and he seemed

> to think that we were doing all the right things as long as he was

> keeping down some liquids and didn't have diahrrea. So we went

> about our day and just fed him cereal and juices. So I stayed home

> with him today and gave him 4 oz. of formula this morning hopeing

> that he hust had a " bug " and it was over. Well, nope! It stayed

> down about 30 min. then came back up all over both of us. We have

> an appt. with our pedi this afternoon, but I was wondering if anyone

> had experienced this with mito. I know some people have talked

> about cyclic vomiting, but I don't know what that is. I have

> horrible visions of a feeding tube in our future, but maybe I am

> overreacting. Please help if you can. Thanks so much!

>

> Oh yes, we use the ready to feed formula, so I thought maybe we got

> a bad bottle, so I threw out that one and tried a new one this

> morning, but it didn't help. Pedialyte stayed down again this

> morning. ????????????

>

> Vicki~ proud mom to Caden, 11 mo. possible mito

>

>

>

>

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

>

[Guest guest]

Vicki,

You could certainly try switching formulas. That might help. Our son had to drink Alimentum because with all the refluxing he did as an infant, that is the only thing that would stay down. Most of it did anyway. What formula is your son drinking? Is he in pain after he drinks the formula at all? I don't know. Just thinking off the top of my head here. I'm sure someone else here has better ideas than me. I'm mostly a lurker too, but when I read CVS, I had to try and help you with some ideas. That's our thing over here. *Ü*

Let us know what the ped said this afternoon, will youj please? Then maybe we can take it from there.

e *Ü*

Anyone experienced this???>>>> Hello everyone. My name is Vicki and I posted a while back right > after our neurologist told us that my son Caden might have mito. I > received lots of supportive responses. Since then, I have mostly > been lurking and trying to learn about this disease. We are not > sure if he does in fact have mito, but I was wondering if someone > might help me with what has been going on with Caden this weekend....>> All was fine Saturday, then Sunday morning he was burning up. His > fever actually only got up to 101, but it was our first fever ever. > We gave him Tylenol and it gradually came down all day. Only thing > was, he couldn't keep any formula down. He would eat fine then > about 30 min. to an hour later, it would all come back up, > projectile. Now, Caden has had severe GERD since he came, so we > really didn't think much about it, but his reflux had been so much > better lately. He hasn't been throwing up like this since he was > first diagnosed with reflux. But it was only his formula. > Pedialyte, juice, and cereal stayed down fine. Now, yesterday he > had no fever all day but was very groggy and lethargic in the AM. > He still couldn't keep his formula down, but was still doing fine > with pedilyte and juice. We called the pedi on call and he seemed > to think that we were doing all the right things as long as he was > keeping down some liquids and didn't have diahrrea. So we went > about our day and just fed him cereal and juices. So I stayed home > with him today and gave him 4 oz. of formula this morning hopeing > that he hust had a "bug" and it was over. Well, nope! It stayed > down about 30 min. then came back up all over both of us. We have > an appt. with our pedi this afternoon, but I was wondering if anyone > had experienced this with mito. I know some people have talked > about cyclic vomiting, but I don't know what that is. I have > horrible visions of a feeding tube in our future, but maybe I am > overreacting. Please help if you can. Thanks so much!>> Oh yes, we use the ready to feed formula, so I thought maybe we got > a bad bottle, so I threw out that one and tried a new one this > morning, but it didn't help. Pedialyte stayed down again this > morning. ????????????>> Vicki~ proud mom to Caden, 11 mo. possible mito>>>>> Please contact mito-owner with any problems or questions. >

[Guest guest]

He drinks plain similac with iron, the ready to feed type thickened with rice

cereal. That is what he has kept down the best since we found out he had reflux

at about 3 weeks of age, and we tried every other formula I can think of. He

has been doing so well, reflux wise, that this is all so baffling to me. I

wouldn't think he would develop an intolerance for the formula in 1 day, but who

am I to say. I will let you know what the pedi says later this afternoon.

Thank for the help!

----- Anyone experienced this???

> >

> >

> >

> > Hello everyone. My name is Vicki and I posted a while back right

> > after our neurologist told us that my son Caden might have mito. I

> > received lots of supportive responses. Since then, I have mostly

> > been lurking and trying to learn about this disease. We are not

> > sure if he does in fact have mito, but I was wondering if someone

> > might help me with what has been going on with Caden this weekend....

> >

> > All was fine Saturday, then Sunday morning he was burning up. His

> > fever actually only got up to 101, but it was our first fever ever.

> > We gave him Tylenol and it gradually came down all day. Only thing

> > was, he couldn't keep any formula down. He would eat fine then

> > about 30 min. to an hour later, it would all come back up,

> > projectile. Now, Caden has had severe GERD since he came, so we

> > really didn't think much about it, but his reflux had been so much

> > better lately. He hasn't been throwing up like this since he was

> > first diagnosed with reflux. But it was only his formula.

> > Pedialyte, juice, and cereal stayed down fine. Now, yesterday he

> > had no fever all day but was very groggy and lethargic in the AM.

> > He still couldn't keep his formula down, but was still doing fine

> > with pedilyte and juice. We called the pedi on call and he seemed

> > to think that we were doing all the right things as long as he was

> > keeping down some liquids and didn't have diahrrea. So we went

> > about our day and just fed him cereal and juices. So I stayed home

> > with him today and gave him 4 oz. of formula this morning hopeing

> > that he hust had a " bug " and it was over. Well, nope! It stayed

> > down about 30 min. then came back up all over both of us. We have

> > an appt. with our pedi this afternoon, but I was wondering if anyone

> > had experienced this with mito. I know some people have talked

> > about cyclic vomiting, but I don't know what that is. I have

> > horrible visions of a feeding tube in our future, but maybe I am

> > overreacting. Please help if you can. Thanks so much!

> >

> > Oh yes, we use the ready to feed formula, so I thought maybe we got

> > a bad bottle, so I threw out that one and tried a new one this

> > morning, but it didn't help. Pedialyte stayed down again this

> > morning. ????????????

> >

> > Vicki~ proud mom to Caden, 11 mo. possible mito

> >

> >

> >

> >

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

> >

[Guest guest]

Yes, our daughter has CVS/Mito/Gerd Our experience with cvs came on all of

a sudden- after she had

a virus and a fever. It was actually the ROTO-virus. She would throw up

everything. A drop of

liquid touched her tounge and it would start the cycle all over again. She

would dehydrate immediately.

She wouldn't tolerate any liquids or solids. We did have to change her formula

to a soy-based one but

once she begins cycling- it didn't matter what she drank. For us, CVS was

from September to May.

(hence the term'cyclic') Any time a child came near her with any virus/cold/infection

she would catch it.

However, the difference for her was the vomiting. An ear infection was the

most common. Even when her

ears just started to turn pink-it would kick off her vomiting. Many times

it would be after the infection had been

treated, episode could start. From age 18 months til 9 years she has spent

17 stays of 3-5 days hospitalized for CVS.

She would begin to throw up and it wouldn't stop for hours and hours. Then

the dry heaves would take over...

We have been able to keep her out of the hospital for a little over 2 years

now but she will go in IF and WHEN

she throws up after the first episode. The risk of severe dehydration and

coma are too real for us.

Many, Many people her on the east coast think CVS is the drug store-not an

illness. The add MITO and

you really confuse them!

Good luck!

vickileew wrote:

Hello

everyone. My name is Vicki and I posted a while back right

after our neurologist told us that my son Caden might have mito. I

received lots of supportive responses. Since then, I have mostly

been lurking and trying to learn about this disease. We are not

sure if he does in fact have mito, but I was wondering if someone

might help me with what has been going on with Caden this weekend....

All was fine Saturday, then Sunday morning he was burning up. His

fever actually only got up to 101, but it was our first fever ever.

We gave him Tylenol and it gradually came down all day. Only thing

was, he couldn't keep any formula down. He would eat fine then

about 30 min. to an hour later, it would all come back up,

projectile. Now, Caden has had severe GERD since he came, so we

really didn't think much about it, but his reflux had been so much

better lately. He hasn't been throwing up like this since he was

first diagnosed with reflux. But it was only his formula.

Pedialyte, juice, and cereal stayed down fine. Now, yesterday he

had no fever all day but was very groggy and lethargic in the AM.

He still couldn't keep his formula down, but was still doing fine

with pedilyte and juice. We called the pedi on call and he seemed

to think that we were doing all the right things as long as he was

keeping down some liquids and didn't have diahrrea. So we went

about our day and just fed him cereal and juices. So I stayed home

with him today and gave him 4 oz. of formula this morning hopeing

that he hust had a "bug" and it was over. Well, nope! It stayed

down about 30 min. then came back up all over both of us. We have

an appt. with our pedi this afternoon, but I was wondering if anyone

had experienced this with mito. I know some people have talked

about cyclic vomiting, but I don't know what that is. I have

horrible visions of a feeding tube in our future, but maybe I am

overreacting. Please help if you can. Thanks so much!

Oh yes, we use the ready to feed formula, so I thought maybe we got

a bad bottle, so I threw out that one and tried a new one this

morning, but it didn't help. Pedialyte stayed down again this

morning. ????????????

Vicki~ proud mom to Caden, 11 mo. possible mito

Please contact mito-owner with any problems or questions.

[Guest guest]

When began her CVS she was about one yr. old. She too had the

rotovirus not too long before this happened. She never really seemed

very sick though. She would be tired and be playing and all of the

sudden she would throw up. It never seemed to scare her or she never

seemed in pain, just tired. We began her on Periactin for what they

call abdominal migraines (believed by some to cause CVS) and she has

not had a problem since!

Dawn

[Guest guest]

Vicki, Sounds like an ear infection. Before my daughter had a nissen, she would vomit with the onset of an ear infection. She actually went thru her first bout at the same age your son is, and I remeber her keeping cereal down, but not formula. Another indicator is not wanting to suck, or screaming while sucking and diminished appetite.

Hope you find the problem=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

Hi ,

Again this is amazing... my daughter also had reflux problems and before the surgery she always had ear infections... but after the surgery was done... we never had an ear infection again... amazing stuff isn't it...

Nettyjayvelde@... wrote:

Vicki, Sounds like an ear infection. Before my daughter had a nissen, she would vomit with the onset of an ear infection. She actually went thru her first bout at the same age your son is, and I remeber her keeping cereal down, but not formula. Another indicator is not wanting to suck, or screaming while sucking and diminished appetite.

Hope you find the problem=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)Please contact mito-owner with any problems or questions. Post your free ad now! Yahoo! Canada Personals

[Guest guest]

Thanks for the info about ear infections. I know that our ENT talked about all

the fluid in Caden's ears (before tubes were put in) and how most of it came

from the reflux. I am sure if the Nissen stopped the reflux and spitting up, it

helped cut down on the fluid backing up in the ears.

Caden's ears were fine according to our pedi. I do not know what is wrong. He

has started keeping small amounts of formula down again, but threw it all up

again last night and then threw up all his baby food and juice tonight. I am so

worried about him. If it continues tomorrow, I guess we will go back in to the

pedi.

Vicki ~ mom to Caden (11 mo) possible mito---------- Original Message

----------------------------------

Reply-To: Mito

Date: Thu, 9 Sep 2004 17:13:14 -0400 (EDT)

>---------- Original Message ----------------------------------

>Hi ,

>Again this is amazing... my daughter also had reflux problems and before the

surgery she always had ear infections... but after the surgery was done... we

never had an ear infection again... amazing stuff isn't it...

>Netty

>

>jayvelde@... wrote:

>Vicki, Sounds like an ear infection. Before my daughter had a nissen, she would

vomit with the onset of an ear infection. She actually went thru her first bout

at the same age your son is, and I remeber her keeping cereal down, but not

formula. Another indicator is not wanting to suck, or screaming while sucking

and diminished appetite.

>Hope you find the problem=)

>

>e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

>

>

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

>

>

>