Re: Emma update - frustrations...Intussuceptions

[Guest guest]

> > Hi ,

> >

> > Emma actually had a throat culture at the beginning of

> September so

> > unless she just caught it, I wouldn't think that PA is the

> problem. I

> > didn't realize some of these bacteria could affect the digestive

> system

> > as well. I kind of just assumed they affected the lungs only.

You

> are

> > saying that your twins throw up when the culture PA aren't you.

> This is

> > very interesting and I am definitely surprised by that. I will

> > definitely keep that in mind. Thanks for mentioning it.

> >

> > We talked to Emma's GI specialist yesterday (actually the

> nurse

> > practitioner talked to her for us) and she indicated she feels

Emma

> > simply has a stomach virus. I find it very strange that she would

> be

> > catching stomach viruses and no one else in the family is

> affected. I

> > also find it strange that she would have it happen twice within a

> month

> > and I thought these stomach viruses usually took about 24-48 hours

> to go

> > away. Her problems last month lasted a full week. They didn't

> seem to

> > think this was strange. Basically, they felt the fever

specifically

> > indicated that it was a virus that if you was having problems such

> as

> > DIOS or Intussusception that she wouldn't have the fever but would

> have

> > severe belly pain. Something just doesn't seem right to me. It

> just

> > doesn't seem to me to be a common stomach bug. It seems more

> severe than

> > that, longer lasting. Last night, I did therapy and she feel

asleep

> > while I did the neb. As I got to the end of her therapy, she

> suddenly

> > started crying and just wouldn't stop. She was howling. She

> stayed up

> > until about 11:30 (2 1/2 - 3 1/2 hours after her usual bedtime)

> crying

> > off and on. She finally went to sleep to wake up in the middle of

> the

> > night for another crying session. I just don't know what to

> think. Emma

> > is not one to cry for no reason. When she gets a shot, she cries

> until I

> > pick her up and then she stops. She has been like that since day

> one.

> > She just hardly ever cries, usually only when we try to feed her.

> So ...

> > I just think they are missing something. I wish I knew more about

> > Intussusception. It is not real common in CFers (Orenstein

> indicated 1%

> > of CF patients get it) and usually it accompanies DIOS which they

> did a

> > belly X-ray to rule out already. Yet, it seems to me that some of

> her

> > symptoms fit what little I know about it. Maybe I should go to

med

> > school ... oh yeah, who has time to read a book let alone study.

Oh

> > well, just a thought as to how I could get some answers.

> >

> > I don't mind if my letter is sent to Oprah. ly, I think

> some of

> > Rosemary's would be more appropriate as her life is much more

> complex and

> > stressful than mine. I did send a letter to Oprah last year

> requesting a

> > show on what mother's of special kids have to do everyday. I

wrote

> it in

> > after they had a show where one partner essentially wanted to

force

> the

> > other to have a kid with them when they didn't want to have kids.

> This

> > totally appalled me and made me really upset since I find it very

> > irresponsible. What would these women or men do if they ended up

> with a

> > special needs child and they didn't have the support of their

> partner to

> > help raise and care for that child. Anyway, I never received a

> response

> > back.

> >

> > - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

> >

> >I'm having similiar problems with my little boy who is seven. He

takes severe pains in his stomach and GI specialist in Children's

hospital in Halifax, NS think that it is intussusceptions.

spikes very high fevers with this pain. He dehydrates and needs IV

treatment. The whole thing can last about 12hrs...and the doctors

aren't telling me it's a

virus!__I

get very

frustrated

with the

whole

medical

system

here in

Canada.The

doctors

in my

home

town

don't

like to

be told

from the

specialist

from

children's

hospital

what it

is !

That

tends to

leave us

in a

mess

and without a proper

diagnosis.Did

someone

say that

cepacia

can

cause

this?______________________________________________________________

> > GET INTERNET ACCESS FROM JUNO!

> > Juno offers FREE or PREMIUM Internet access for less!

> > Join Juno today! For your FREE software, visit:

> > http://dl.www.juno.com/get/web/.

[Guest guest]

> > Hi ,

> >

> > Emma actually had a throat culture at the beginning of

> September so

> > unless she just caught it, I wouldn't think that PA is the

> problem. I

> > didn't realize some of these bacteria could affect the digestive

> system

> > as well. I kind of just assumed they affected the lungs only.

You

> are

> > saying that your twins throw up when the culture PA aren't you.

> This is

> > very interesting and I am definitely surprised by that. I will

> > definitely keep that in mind. Thanks for mentioning it.

> >

> > We talked to Emma's GI specialist yesterday (actually the

> nurse

> > practitioner talked to her for us) and she indicated she feels

Emma

> > simply has a stomach virus. I find it very strange that she would

> be

> > catching stomach viruses and no one else in the family is

> affected. I

> > also find it strange that she would have it happen twice within a

> month

> > and I thought these stomach viruses usually took about 24-48 hours

> to go

> > away. Her problems last month lasted a full week. They didn't

> seem to

> > think this was strange. Basically, they felt the fever

specifically

> > indicated that it was a virus that if you was having problems such

> as

> > DIOS or Intussusception that she wouldn't have the fever but would

> have

> > severe belly pain. Something just doesn't seem right to me. It

> just

> > doesn't seem to me to be a common stomach bug. It seems more

> severe than

> > that, longer lasting. Last night, I did therapy and she feel

asleep

> > while I did the neb. As I got to the end of her therapy, she

> suddenly

> > started crying and just wouldn't stop. She was howling. She

> stayed up

> > until about 11:30 (2 1/2 - 3 1/2 hours after her usual bedtime)

> crying

> > off and on. She finally went to sleep to wake up in the middle of

> the

> > night for another crying session. I just don't know what to

> think. Emma

> > is not one to cry for no reason. When she gets a shot, she cries

> until I

> > pick her up and then she stops. She has been like that since day

> one.

> > She just hardly ever cries, usually only when we try to feed her.

> So ...

> > I just think they are missing something. I wish I knew more about

> > Intussusception. It is not real common in CFers (Orenstein

> indicated 1%

> > of CF patients get it) and usually it accompanies DIOS which they

> did a

> > belly X-ray to rule out already. Yet, it seems to me that some of

> her

> > symptoms fit what little I know about it. Maybe I should go to

med

> > school ... oh yeah, who has time to read a book let alone study.

Oh

> > well, just a thought as to how I could get some answers.

> >

> > I don't mind if my letter is sent to Oprah. ly, I think

> some of

> > Rosemary's would be more appropriate as her life is much more

> complex and

> > stressful than mine. I did send a letter to Oprah last year

> requesting a

> > show on what mother's of special kids have to do everyday. I

wrote

> it in

> > after they had a show where one partner essentially wanted to

force

> the

> > other to have a kid with them when they didn't want to have kids.

> This

> > totally appalled me and made me really upset since I find it very

> > irresponsible. What would these women or men do if they ended up

> with a

> > special needs child and they didn't have the support of their

> partner to

> > help raise and care for that child. Anyway, I never received a

> response

> > back.

> >

> > - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

> >

> >I'm having similiar problems with my little boy who is seven. He

takes severe pains in his stomach and GI specialist in Children's

hospital in Halifax, NS think that it is intussusceptions.

spikes very high fevers with this pain. He dehydrates and needs IV

treatment. The whole thing can last about 12hrs...and the doctors

aren't telling me it's a

virus!__I

get very

frustrated

with the

whole

medical

system

here in

Canada.The

doctors

in my

home

town

don't

like to

be told

from the

specialist

from

children's

hospital

what it

is !

That

tends to

leave us

in a

mess

and without a proper

diagnosis.Did

someone

say that

cepacia

can

cause

this?______________________________________________________________

> > GET INTERNET ACCESS FROM JUNO!

> > Juno offers FREE or PREMIUM Internet access for less!

> > Join Juno today! For your FREE software, visit:

> > http://dl.www.juno.com/get/web/.

[Guest guest]

> > Hi ,

> >

> > Emma actually had a throat culture at the beginning of

> September so

> > unless she just caught it, I wouldn't think that PA is the

> problem. I

> > didn't realize some of these bacteria could affect the digestive

> system

> > as well. I kind of just assumed they affected the lungs only.

You

> are

> > saying that your twins throw up when the culture PA aren't you.

> This is

> > very interesting and I am definitely surprised by that. I will

> > definitely keep that in mind. Thanks for mentioning it.

> >

> > We talked to Emma's GI specialist yesterday (actually the

> nurse

> > practitioner talked to her for us) and she indicated she feels

Emma

> > simply has a stomach virus. I find it very strange that she would

> be

> > catching stomach viruses and no one else in the family is

> affected. I

> > also find it strange that she would have it happen twice within a

> month

> > and I thought these stomach viruses usually took about 24-48 hours

> to go

> > away. Her problems last month lasted a full week. They didn't

> seem to

> > think this was strange. Basically, they felt the fever

specifically

> > indicated that it was a virus that if you was having problems such

> as

> > DIOS or Intussusception that she wouldn't have the fever but would

> have

> > severe belly pain. Something just doesn't seem right to me. It

> just

> > doesn't seem to me to be a common stomach bug. It seems more

> severe than

> > that, longer lasting. Last night, I did therapy and she feel

asleep

> > while I did the neb. As I got to the end of her therapy, she

> suddenly

> > started crying and just wouldn't stop. She was howling. She

> stayed up

> > until about 11:30 (2 1/2 - 3 1/2 hours after her usual bedtime)

> crying

> > off and on. She finally went to sleep to wake up in the middle of

> the

> > night for another crying session. I just don't know what to

> think. Emma

> > is not one to cry for no reason. When she gets a shot, she cries

> until I

> > pick her up and then she stops. She has been like that since day

> one.

> > She just hardly ever cries, usually only when we try to feed her.

> So ...

> > I just think they are missing something. I wish I knew more about

> > Intussusception. It is not real common in CFers (Orenstein

> indicated 1%

> > of CF patients get it) and usually it accompanies DIOS which they

> did a

> > belly X-ray to rule out already. Yet, it seems to me that some of

> her

> > symptoms fit what little I know about it. Maybe I should go to

med

> > school ... oh yeah, who has time to read a book let alone study.

Oh

> > well, just a thought as to how I could get some answers.

> >

> > I don't mind if my letter is sent to Oprah. ly, I think

> some of

> > Rosemary's would be more appropriate as her life is much more

> complex and

> > stressful than mine. I did send a letter to Oprah last year

> requesting a

> > show on what mother's of special kids have to do everyday. I

wrote

> it in

> > after they had a show where one partner essentially wanted to

force

> the

> > other to have a kid with them when they didn't want to have kids.

> This

> > totally appalled me and made me really upset since I find it very

> > irresponsible. What would these women or men do if they ended up

> with a

> > special needs child and they didn't have the support of their

> partner to

> > help raise and care for that child. Anyway, I never received a

> response

> > back.

> >

> > - mom to Emma 2 years w/cf and Isabelle 4 years wo/cf

> >

> >I'm having similiar problems with my little boy who is seven. He

takes severe pains in his stomach and GI specialist in Children's

hospital in Halifax, NS think that it is intussusceptions.

spikes very high fevers with this pain. He dehydrates and needs IV

treatment. The whole thing can last about 12hrs...and the doctors

aren't telling me it's a

virus!__I

get very

frustrated

with the

whole

medical

system

here in

Canada.The

doctors

in my

home

town

don't

like to

be told

from the

specialist

from

children's

hospital

what it

is !

That

tends to

leave us

in a

mess

and without a proper

diagnosis.Did

someone

say that

cepacia

can

cause

this?______________________________________________________________

> > GET INTERNET ACCESS FROM JUNO!

> > Juno offers FREE or PREMIUM Internet access for less!

> > Join Juno today! For your FREE software, visit:

> > http://dl.www.juno.com/get/web/.