Re: misc. replies, and a post sinus surgery question

[Guest guest]

, I don't mind sharing my story. Maybe it'll

help me to find some others in similiar situations.

So, here's how it happened. I have three kids. Kylie 4

years with athsma. Then there's Kedzie. At 7 months

old Kedzie was hospitalized with pneumonia, and gerds.

She was tested for CF at the time and we were told the

sweat test was negative. We were not referred for

genetic testing, and the doc's wanted to tube feed her

due to aspiration. I'm a special ed teacher and I

refused, so I quite my job to stay home and thicken

all of her feeds and to teach her how to swallow.

Anyway, in time she improved. We stressed to the docs

that we wanted more children and they assured us this

was nothing genetic so we decided to have another

child. When I was 32 wks pregnant she became extremely

ill again and we were going nuts. So finally our

pediatrician suggested another sweat test. Borderline

at 50 2 times. So at that point we we were referred

for genetic testing. Of course we found that we were

all carriers including KEDZIE! We don't know why she

had a borderline test, but her genetic testing shows

she is only a carrier. We then tested Jonah at birth

BOOM! So, right away he was very sick and he continued

to get sicker and sicker with 4 major hospitalizations

2-3 wks in length. He was steroid dependent and

stopped growing. We tried 2 different CF centers in

Chicago. (He developed psuedemonas at 5 wks old.)

Finally, we decided we needed to find him the best

care possible. We researched 120 CF facilities and

narrowed it down to the 7 therapuetic development

centers. We ended up moving to Cincinnati in July. We

hoped that if he was in a place with the most current

research, he would do better. Right away they put him

on Pulmazyme which was not available for his age group

in Chicago. He is now completely off of all steroids

and although he has had 3 recent pneumonias and RSV,

he has stayed out of the hospital. Last week he had a

CT scan of his chest and believe it or not there were

no signs of ANY lung damage!! We were thrilled. The

center here seems much more aggressive and proactive.

As for his size, we will have to see. He is slowly

starting to grow again. Developmentally he is SUPER,

PERFECT, GREAT! His also really cute! Sorry this is so

long winded!! Thanks for listening, Michele

--- wrote:

>

>

> Hi,

>

> MICHELE, Hi, welcome to the list! I'm in WI, not

> Ohio, but even if you

> don't find people in Ohio on the list, you'll still

> find lots of

> " cyber-friends " to chat with. This is a great list,

> and people are really

> supportive. Do you feel like telling us a bit about

> your child with CF,

> your other kids, a little family history? My

> daughter Meagan has CF; she's

> 4 1/2 and was just diagnosed last April. She's

> pancreatic sufficient so we

> don't do any of the enzymes, but she's had a little

> lung trouble along the

> way (some Staph Aureus in July, but mostly a lot of

> asthma). She's got

> sinus disease, and had surgery recently for that,

> which has her feeling A

> LOT better :-) My other daughter, Kailin, is a

> carrier, and like Meagan she

> has considerable asthma. Hope to hear more from you!

>

> TORSTEN, Wow, e-mail access at home now, will this

> mean double the posts to

> the list? And now Silke can lurk if she wants

> (Ken's still reading the

> digest every day, even though he only posted once,

> and I think he gets a lot

> out of it.

>

> NANCY, Hope 's feeling better! Did she have

> the X-rays and other

> tests yet? I really hope it's just a bad virus.

>

> A question for those who have kids who've had sinus

> surgery. I talked to

> the ENT nurse today on the phone and she says she's

> not concerned that

> Meagan still has dime-sized green/brown mucus chunks

> coming out during every

> nasal rinse, and she doesn't necessarily think that

> it means that there's

> anything bacterial going on (M's still on

> Augmentin). What's your

> experience been with post-sinus-surgery nasal

> mucus??? (M. doesn't have PA

> yet, so that's not a factor in the sinus goo.)

>

> TAMIKO, I hope you find some helpful information

> here! The standard of care

> for people with CF who have pseudomonas infections

> is generallly nebulized

> Tobi (or sometimes Tobramycin, the IV form, added to

> the nebulizer mixture

> for inhalation), and it's most often given on a

> 28-days-on, 28-days-off

> schedule to prevent resistance. (If you haven't

> used one, a nebulizer is an

> air compressor which feeds air into a nebulizer cup

> through plastic tubing,

> creating aerosol medication which is inhaled through

> a mask or a

> mouthpiece.) I'm not sure how this would apply to a

> child without CF.

> Pseudomonas is a pretty stubborn bacteria once it

> gets a foothold, and

> people with CF also sometimes have courses of IV

> antibiotics to keep it

> under control. At least in people with CF, pseudo.

> doesn't respond well to

> oral antibiotics, but again, I'm not sure if this

> would apply to people

> without CF. Good luck!

>

> , mom of Meagan 4 (cf, asthma) & Kailin 7

> (asthma)

>

> ---------------------------

[Guest guest]

Michele,

Just wanted to let you know that our daughter went through the aspirating

when she swallowed too. They wanted to do the tube feeding, and so we had

a huge meeting with staff and family, and refused the tube also. We

thickened her food, and she got speech therapy to help her. She also

improved! Glad to hear that your kids are improving, and I will be looking

forward to hearing more improvement posts. Keep up the good work, you seem

to be a wonderful mom:)

-mom of 4

----------

>

> To: cfparentsonelist

> Subject: Re: misc. replies, and a post sinus surgery question

> Date: Monday, November 15, 1999 6:12 PM

>

>

>

>

> , I don't mind sharing my story. Maybe it'll

> help me to find some others in similiar situations.

> So, here's how it happened. I have three kids. Kylie 4

> years with athsma. Then there's Kedzie. At 7 months

> old Kedzie was hospitalized with pneumonia, and gerds.

> She was tested for CF at the time and we were told the

> sweat test was negative. We were not referred for

> genetic testing, and the doc's wanted to tube feed her

> due to aspiration. I'm a special ed teacher and I

> refused, so I quite my job to stay home and thicken

> all of her feeds and to teach her how to swallow.

> Anyway, in time she improved. We stressed to the docs

> that we wanted more children and they assured us this

> was nothing genetic so we decided to have another

> child. When I was 32 wks pregnant she became extremely

> ill again and we were going nuts. So finally our

> pediatrician suggested another sweat test. Borderline

> at 50 2 times. So at that point we we were referred

> for genetic testing. Of course we found that we were

> all carriers including KEDZIE! We don't know why she

> had a borderline test, but her genetic testing shows

> she is only a carrier. We then tested Jonah at birth

> BOOM! So, right away he was very sick and he continued

> to get sicker and sicker with 4 major hospitalizations

> 2-3 wks in length. He was steroid dependent and

> stopped growing. We tried 2 different CF centers in

> Chicago. (He developed psuedemonas at 5 wks old.)

> Finally, we decided we needed to find him the best

> care possible. We researched 120 CF facilities and

> narrowed it down to the 7 therapuetic development

> centers. We ended up moving to Cincinnati in July. We

> hoped that if he was in a place with the most current

> research, he would do better. Right away they put him

> on Pulmazyme which was not available for his age group

> in Chicago. He is now completely off of all steroids

> and although he has had 3 recent pneumonias and RSV,

> he has stayed out of the hospital. Last week he had a

> CT scan of his chest and believe it or not there were

> no signs of ANY lung damage!! We were thrilled. The

> center here seems much more aggressive and proactive.

> As for his size, we will have to see. He is slowly

> starting to grow again. Developmentally he is SUPER,

> PERFECT, GREAT! His also really cute! Sorry this is so

> long winded!! Thanks for listening, Michele

> --- wrote:

> >

> >

> > Hi,

> >

> > MICHELE, Hi, welcome to the list! I'm in WI, not

> > Ohio, but even if you

> > don't find people in Ohio on the list, you'll still

> > find lots of

> > " cyber-friends " to chat with. This is a great list,

> > and people are really

> > supportive. Do you feel like telling us a bit about

> > your child with CF,

> > your other kids, a little family history? My

> > daughter Meagan has CF; she's

> > 4 1/2 and was just diagnosed last April. She's

> > pancreatic sufficient so we

> > don't do any of the enzymes, but she's had a little

> > lung trouble along the

> > way (some Staph Aureus in July, but mostly a lot of

> > asthma). She's got

> > sinus disease, and had surgery recently for that,

> > which has her feeling A

> > LOT better :-) My other daughter, Kailin, is a

> > carrier, and like Meagan she

> > has considerable asthma. Hope to hear more from you!

> >

> > TORSTEN, Wow, e-mail access at home now, will this

> > mean double the posts to

> > the list? And now Silke can lurk if she wants

> > (Ken's still reading the

> > digest every day, even though he only posted once,

> > and I think he gets a lot

> > out of it.

> >

> > NANCY, Hope 's feeling better! Did she have

> > the X-rays and other

> > tests yet? I really hope it's just a bad virus.

> >

> > A question for those who have kids who've had sinus

> > surgery. I talked to

> > the ENT nurse today on the phone and she says she's

> > not concerned that

> > Meagan still has dime-sized green/brown mucus chunks

> > coming out during every

> > nasal rinse, and she doesn't necessarily think that

> > it means that there's

> > anything bacterial going on (M's still on

> > Augmentin). What's your

> > experience been with post-sinus-surgery nasal

> > mucus??? (M. doesn't have PA

> > yet, so that's not a factor in the sinus goo.)

> >

> > TAMIKO, I hope you find some helpful information

> > here! The standard of care

> > for people with CF who have pseudomonas infections

> > is generallly nebulized

> > Tobi (or sometimes Tobramycin, the IV form, added to

> > the nebulizer mixture

> > for inhalation), and it's most often given on a

> > 28-days-on, 28-days-off

> > schedule to prevent resistance. (If you haven't

> > used one, a nebulizer is an

> > air compressor which feeds air into a nebulizer cup

> > through plastic tubing,

> > creating aerosol medication which is inhaled through

> > a mask or a

> > mouthpiece.) I'm not sure how this would apply to a

> > child without CF.

> > Pseudomonas is a pretty stubborn bacteria once it

> > gets a foothold, and

> > people with CF also sometimes have courses of IV

> > antibiotics to keep it

> > under control. At least in people with CF, pseudo.

> > doesn't respond well to

> > oral antibiotics, but again, I'm not sure if this

> > would apply to people

> > without CF. Good luck!

> >

> > , mom of Meagan 4 (cf, asthma) & Kailin 7

> > (asthma)

> >

> > ---------------------------

[Guest guest]

Michele, Yes, our daughter has CF. She is 6. We also have 3 others who

don't have CF. They are younger than she. She was 18 mo. old when she

started her speech therapy, and we had a lot of problems too, until she was

about 2.5, and then it got a little easier. She didn't care much for her

therapist, I don't think. How old is Kedzie? I don't know if you told us

all or not...my memory is not very good...haha:) Hope you are enjoying the

list so far!!!

-mom of 4

----------

>

> To: cfparentsonelist

> Subject: Re: misc. replies, and a post sinus surgery question

> Date: Tuesday, November 16, 1999 9:55 AM

>

>

>

>

> , thanks for the positive words. Does your

> daughter have CF? We found that Kedzie now has a

> slight lisp. She went through speech too, but at two

> yrs old she did not cooperate well. We are going to

> have her reevaluated at 4 yrs if the lisp is still

> there. Thanks michele

> --- Don And wrote:

> >

> >

> > Michele,

> > Just wanted to let you know that our daughter went

> > through the aspirating

> > when she swallowed too. They wanted to do the tube

> > feeding, and so we had

> > a huge meeting with staff and family, and refused

> > the tube also. We

> > thickened her food, and she got speech therapy to

> > help her. She also

> > improved! Glad to hear that your kids are

> > improving, and I will be looking

> > forward to hearing more improvement posts. Keep up

> > the good work, you seem

> > to be a wonderful mom:)

> > -mom of 4

> >

> > ----------

> > >

> > > To: cfparentsonelist

> > > Subject: Re: misc. replies, and a post

> > sinus surgery question

> > > Date: Monday, November 15, 1999 6:12 PM

> > >

> > >

> > >

> > >

> > > , I don't mind sharing my story. Maybe

> > it'll

> > > help me to find some others in similiar

> > situations.

> > > So, here's how it happened. I have three kids.

> > Kylie 4

> > > years with athsma. Then there's Kedzie. At 7

> > months

> > > old Kedzie was hospitalized with pneumonia, and

> > gerds.

> > > She was tested for CF at the time and we were told

> > the

> > > sweat test was negative. We were not referred for

> > > genetic testing, and the doc's wanted to tube feed

> > her

> > > due to aspiration. I'm a special ed teacher and I

> > > refused, so I quite my job to stay home and

> > thicken

> > > all of her feeds and to teach her how to swallow.

> > > Anyway, in time she improved. We stressed to the

> > docs

> > > that we wanted more children and they assured us

> > this

> > > was nothing genetic so we decided to have another

> > > child. When I was 32 wks pregnant she became

> > extremely

> > > ill again and we were going nuts. So finally our

> > > pediatrician suggested another sweat test.

> > Borderline

> > > at 50 2 times. So at that point we we were

> > referred

> > > for genetic testing. Of course we found that we

> > were

> > > all carriers including KEDZIE! We don't know why

> > she

> > > had a borderline test, but her genetic testing

> > shows

> > > she is only a carrier. We then tested Jonah at

> > birth

> > > BOOM! So, right away he was very sick and he

> > continued

> > > to get sicker and sicker with 4 major

> > hospitalizations

> > > 2-3 wks in length. He was steroid dependent and

> > > stopped growing. We tried 2 different CF centers

> > in

> > > Chicago. (He developed psuedemonas at 5 wks old.)

> > > Finally, we decided we needed to find him the best

> > > care possible. We researched 120 CF facilities and

> > > narrowed it down to the 7 therapuetic development

> > > centers. We ended up moving to Cincinnati in July.

> > We

> > > hoped that if he was in a place with the most

> > current

> > > research, he would do better. Right away they put

> > him

> > > on Pulmazyme which was not available for his age

> > group

> > > in Chicago. He is now completely off of all

> > steroids

> > > and although he has had 3 recent pneumonias and

> > RSV,

> > > he has stayed out of the hospital. Last week he

> > had a

> > > CT scan of his chest and believe it or not there

> > were

> > > no signs of ANY lung damage!! We were thrilled.

> > The

> > > center here seems much more aggressive and

> > proactive.

> > > As for his size, we will have to see. He is slowly

> > > starting to grow again. Developmentally he is

> > SUPER,

> > > PERFECT, GREAT! His also really cute! Sorry this

> > is so

> > > long winded!! Thanks for listening, Michele

> > > --- wrote:

> > > >

> > > >

> > > > Hi,

> > > >

> > > > MICHELE, Hi, welcome to the list! I'm in WI,

> > not

> > > > Ohio, but even if you

> > > > don't find people in Ohio on the list, you'll

> > still

> > > > find lots of

> > > > " cyber-friends " to chat with. This is a great

> > list,

> > > > and people are really

> > > > supportive. Do you feel like telling us a bit

> > about

> > > > your child with CF,

> > > > your other kids, a little family history? My

> > > > daughter Meagan has CF; she's

> > > > 4 1/2 and was just diagnosed last April. She's

> > > > pancreatic sufficient so we

> > > > don't do any of the enzymes, but she's had a

> > little

> > > > lung trouble along the

> > > > way (some Staph Aureus in July, but mostly a lot

> > of

> > > > asthma). She's got

> > > > sinus disease, and had surgery recently for

> > that,

> > > > which has her feeling A

> > > > LOT better :-) My other daughter, Kailin, is a

> > > > carrier, and like Meagan she

> > > > has considerable asthma. Hope to hear more from

> > you!

> > > >

> > > > TORSTEN, Wow, e-mail access at home now, will

> > this

> > > > mean double the posts to

> > > > the list? And now Silke can lurk if she wants

> > > > (Ken's still reading the

> > > > digest every day, even though he only posted

> > once,

> > > > and I think he gets a lot

> > > > out of it.

> > > >

> > > > NANCY, Hope 's feeling better! Did she

> > have

> > > > the X-rays and other

> > > > tests yet? I really hope it's just a bad virus.

> >

> > > >

> > > > A question for those who have kids who've had

> > sinus

> > > > surgery. I talked to

> > > > the ENT nurse today on the phone and she says

> > she's

> > > > not concerned that

> > > > Meagan still has dime-sized green/brown mucus

> > chunks

> > > > coming out during every

> > > > nasal rinse, and she doesn't necessarily think

> > that

> > > > it means that there's

> > > > anything bacterial going on (M's still on

> > > > Augmentin). What's your

> > > > experience been with post-sinus-surgery nasal

> > > > mucus??? (M. doesn't have PA

> > > > yet, so that's not a factor in the sinus goo.)

> > > >

> > > > TAMIKO, I hope you find some helpful information

> > > > here! The standard of care

> > > > for people with CF who have pseudomonas

> > infections

> > > > is generallly nebulized

> > > > Tobi (or sometimes Tobramycin, the IV form,

> > added to

> > > > the nebulizer mixture

> > > > for inhalation), and it's most often given on a

> > > > 28-days-on, 28-days-off

> > > > schedule to prevent resistance. (If you haven't

> > > > used one, a nebulizer is an

> > > > air compressor which feeds air into a nebulizer

> > cup

> > > > through plastic tubing,

> > > > creating aerosol medication which is inhaled

> > through

> > > > a mask or a

> > > > mouthpiece.) I'm not sure how this would apply

> > to a

> > > > child without CF.

> > > > Pseudomonas is a pretty stubborn bacteria once

> > it

> > > > gets a foothold, and

> > > > people with CF also sometimes have courses of IV

> > > > antibiotics to keep it

> > > > under control. At least in people with CF,

> > pseudo.

> >

> === message truncated ===

>

>

> =====

>

> > This is a secular list.

>

> The opinions and information exchanged on this list should in no way be

construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING

ANY MEDICATIONS OR TREATMENTS.

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