Re: Emma update - frustrations

October 17, 2002

Your email is heart wrenching. Early on, someone told me that

dealing with cf would be a roller coster ride. It is true. There

are times that things seem good and times that life is pretty scary.

I suspect that we will never be without this fear in the back of our

minds. When our kids are sick, our fears are worse. I am a

Grandmother and know how much I am effected by this. To be

the " parent " must be much much harder. I had a son die 16 years

ago. He was trisomy 13. I only knew that he might die for about 24

hours prior to his death. It took me years to come to grips with

it. I can't even imagine the extreme pain that the parents on this

list are living with. My heart goes out to all of you and to the

pwcf also.

How often do you feed Emma? Abby has severe reflux and also has

trouble swallowing (some it goes into her lungs). She used to vomit

multiple times a day also. She is now on Prevacid, Zantac and Reglin

(along with the other cf meds). Abby can not have any liquids. We

thicken her formula with rice cereal. Her GI doctor recently told us

to try feeding her smaller amounts, more frequently. This really

seems to help. Abby eats every three hours now.

Please keep us posted on how Emma is doing.

Gale

> Emma's G-tube site has cleared up. It took a little while but the

> steroid cream that she was put on has really done wonders for her

> granulomas (the scar tissue that was forming and causing all of the

> problems). The granulomas appear to be gone (on the surface

anyway) and

> there is no bleeding at all anymore (that actually ended a few

weeks ago

> now). Thats one thing i don't have to worry about ... at least for

now.

>

> Her vomiting slowed down considerably and she was down to one a

day.

> Unfortunately today she puked at every meal and when I gave her

meds. She

> also has a fever and was really out of it today (sleepy). She did

this

> same routine about a month ago (it prompted a trip to the ER). I am

> getting so frustrated. I just don't know what is going on and I

don't

> feel like her doctors know either. The kicker today was when I was

> sitting on the couch just holding Emma, Isabelle came by and sat

down

> beside me. We started to talk and I was telling her that it's hard

to be

> Emma because she always feels sick and throws up. Isabelle

responded by

> telling me that Emma was going to die. I was so thrown back, I

didn't

> know what to say. I ended up simply telling her not to say that

again

> that I didn't want to hear her saying that. I didn't yell and she

didn't

> get mad which is hard with her these days, she has become ultra

sensitive

> (she's four). It's been bothering me all night ever since she said

it.

> Anyway, I feel very frustrated because I don't understand what is

really

> going on with Emma at the moment. You would think one would get

used to

> all of it but this is all such a hard roller coaster to ride.

>

> Talk to you later,

>

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

>

> ________________________________________________________________

> GET INTERNET ACCESS FROM JUNO!

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October 17, 2002

Your email is heart wrenching. Early on, someone told me that

dealing with cf would be a roller coster ride. It is true. There

are times that things seem good and times that life is pretty scary.

I suspect that we will never be without this fear in the back of our

minds. When our kids are sick, our fears are worse. I am a

Grandmother and know how much I am effected by this. To be

the " parent " must be much much harder. I had a son die 16 years

ago. He was trisomy 13. I only knew that he might die for about 24

hours prior to his death. It took me years to come to grips with

it. I can't even imagine the extreme pain that the parents on this

list are living with. My heart goes out to all of you and to the

pwcf also.

How often do you feed Emma? Abby has severe reflux and also has

trouble swallowing (some it goes into her lungs). She used to vomit

multiple times a day also. She is now on Prevacid, Zantac and Reglin

(along with the other cf meds). Abby can not have any liquids. We

thicken her formula with rice cereal. Her GI doctor recently told us

to try feeding her smaller amounts, more frequently. This really

seems to help. Abby eats every three hours now.

Please keep us posted on how Emma is doing.

Gale

> Emma's G-tube site has cleared up. It took a little while but the

> steroid cream that she was put on has really done wonders for her

> granulomas (the scar tissue that was forming and causing all of the

> problems). The granulomas appear to be gone (on the surface

anyway) and

> there is no bleeding at all anymore (that actually ended a few

weeks ago

> now). Thats one thing i don't have to worry about ... at least for

now.

>

> Her vomiting slowed down considerably and she was down to one a

day.

> Unfortunately today she puked at every meal and when I gave her

meds. She

> also has a fever and was really out of it today (sleepy). She did

this

> same routine about a month ago (it prompted a trip to the ER). I am

> getting so frustrated. I just don't know what is going on and I

don't

> feel like her doctors know either. The kicker today was when I was

> sitting on the couch just holding Emma, Isabelle came by and sat

down

> beside me. We started to talk and I was telling her that it's hard

to be

> Emma because she always feels sick and throws up. Isabelle

responded by

> telling me that Emma was going to die. I was so thrown back, I

didn't

> know what to say. I ended up simply telling her not to say that

again

> that I didn't want to hear her saying that. I didn't yell and she

didn't

> get mad which is hard with her these days, she has become ultra

sensitive

> (she's four). It's been bothering me all night ever since she said

it.

> Anyway, I feel very frustrated because I don't understand what is

really

> going on with Emma at the moment. You would think one would get

used to

> all of it but this is all such a hard roller coaster to ride.

>

> Talk to you later,

>

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

>

> ________________________________________________________________

> 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/.

October 18, 2002

Gale,

Emma is on Prilosec but she can't take Reglan or Bethanacol as they

actually increase her vomiting (this is listed as a side effect of these

drugs for some people). We do the small amount thing as well. She is

feed 5 ounces of food every three hours as well as overnight feeds. I'm

sorry to hear about what happened to your son. I am sure it was a very

difficult experience. Kids steal your heart and soul and its heart

wrenching to see them suffer in any way.

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

________________________________________________________________

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October 18, 2002

Gale,

Emma is on Prilosec but she can't take Reglan or Bethanacol as they

actually increase her vomiting (this is listed as a side effect of these

drugs for some people). We do the small amount thing as well. She is

feed 5 ounces of food every three hours as well as overnight feeds. I'm

sorry to hear about what happened to your son. I am sure it was a very

difficult experience. Kids steal your heart and soul and its heart

wrenching to see them suffer in any way.

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

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

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October 19, 2002

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

________________________________________________________________

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October 19, 2002

All I could think of when I read your post was trust your gut. Be in

the doctors faces until they get so sick of you they do everything

possible for Emma to get you out of their office. I didn't trust

myself enough to stand up to a doctor once and it landed Wy in the

hospital. I've never backed down again. Yes, they are doctors but

they see soooo many people who complain about little things they are

used to sending some away quickly. As much as they know about

medicine NO ONE knows more about Emma than her parents!!! Fight for

her until you get an answer that causes her to feel better.

LOts of luck,

Christy mom of Wyatt 7wcf and Hunter 2wocf

> 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

>

> ________________________________________________________________

> 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/.

October 19, 2002