Re: New here - Hello to all

[Guest guest]

In a message dated 11/24/2002 12:33:10 AM Central Standard Time,

kabrowder@... writes:

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

Welcome Keeley's Mom! I have three girls and two of them have CF. We were

very shocked when we were diagnosed too. You will love this group there are a

lot helpful people on this group. Deb A

[Guest guest]

In a message dated 11/24/2002 12:33:10 AM Central Standard Time,

kabrowder@... writes:

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

Welcome Keeley's Mom! I have three girls and two of them have CF. We were

very shocked when we were diagnosed too. You will love this group there are a

lot helpful people on this group. Deb A

[Guest guest]

In a message dated 11/24/2002 12:33:10 AM Central Standard Time,

kabrowder@... writes:

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

Welcome Keeley's Mom! I have three girls and two of them have CF. We were

very shocked when we were diagnosed too. You will love this group there are a

lot helpful people on this group. Deb A

[Guest guest]

Hi Keeley,

welcome to the list! There is at least one other mom on this list, whose

little son has both CF and A1AT deficiency. You can contact at

mamabear@...

Hope Leila keeps to do well.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis. She

had a meconium ileus that required a 15 day NICU stay, but no surgery. We

were very surprised by the diagnosis, and I can't honestly say we're used to

the idea yet. On the up side, her early diagnosis let us start nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!! None of

the doctors in our center have ever seen the 2 defects together, but we have

traveled to another city to see a doctor that has. He still wasn't able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote. As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

>

[Guest guest]

Hi Keeley,

welcome to the list! There is at least one other mom on this list, whose

little son has both CF and A1AT deficiency. You can contact at

mamabear@...

Hope Leila keeps to do well.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis. She

had a meconium ileus that required a 15 day NICU stay, but no surgery. We

were very surprised by the diagnosis, and I can't honestly say we're used to

the idea yet. On the up side, her early diagnosis let us start nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!! None of

the doctors in our center have ever seen the 2 defects together, but we have

traveled to another city to see a doctor that has. He still wasn't able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote. As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

>

[Guest guest]

Hi Keeley,

welcome to the list! There is at least one other mom on this list, whose

little son has both CF and A1AT deficiency. You can contact at

mamabear@...

Hope Leila keeps to do well.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis. She

had a meconium ileus that required a 15 day NICU stay, but no surgery. We

were very surprised by the diagnosis, and I can't honestly say we're used to

the idea yet. On the up side, her early diagnosis let us start nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!! None of

the doctors in our center have ever seen the 2 defects together, but we have

traveled to another city to see a doctor that has. He still wasn't able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote. As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

>

[Guest guest]

In a message dated 11/24/2002 9:50:15 PM Central Standard Time,

kabrowder@... writes:

> Thanks! I saw the picture of your girls and they are very pretty. Looks

> like they are all doing very well.

>

The thing we fight with the most is psuedomonas. We can't seem to get rid of

it with my oldest. We have been trying since year ago in Oct. She has had two

sinus surgery's and we think the psuedomonas is in her nose. Which is better

then her lungs but we are worried if we don't get rid of it from her nose it

will soon be in her lungs. Right now they are thinking about putting tubes in

her nose to see if we can get rid of the psuedomonas in her nose. Since we

have tried everything else. Hopefully we will find out sometime this week. My

oldest was not diagnosed until she was 6 years old and my youngest was almost

2. They look very healthy and act really healthy but you can see what is

going on in the inside. Deb A

[Guest guest]

Thanks! I saw the picture of your girls and they are very pretty. Looks like

they are all doing very well.

Re: New here - Hello to all

In a message dated 11/24/2002 12:33:10 AM Central Standard Time,

kabrowder@... writes:

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

Welcome Keeley's Mom! I have three girls and two of them have CF. We were

very shocked when we were diagnosed too. You will love this group there are a

lot helpful people on this group. Deb A

[Guest guest]

Thanks! I saw the picture of your girls and they are very pretty. Looks like

they are all doing very well.

Re: New here - Hello to all

In a message dated 11/24/2002 12:33:10 AM Central Standard Time,

kabrowder@... writes:

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

Welcome Keeley's Mom! I have three girls and two of them have CF. We were

very shocked when we were diagnosed too. You will love this group there are a

lot helpful people on this group. Deb A

[Guest guest]

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A

[Guest guest]

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A

[Guest guest]

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A

[Guest guest]

Hi Torsten,

Thanks for the address! I will contact her. Her web site is interesting.

Keeley

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis. She

had a meconium ileus that required a 15 day NICU stay, but no surgery. We

were very surprised by the diagnosis, and I can't honestly say we're used to

the idea yet. On the up side, her early diagnosis let us start nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!! None of

the doctors in our center have ever seen the 2 defects together, but we have

traveled to another city to see a doctor that has. He still wasn't able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote. As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

>

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

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.

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

[Guest guest]

From what I understand, Pseudomonas is what all CF'ers have trouble with, right?

Do you ever get rid of it once you have it? I hope the tubes can help your

daughter.

Keeley

Re: New here - Hello to all

In a message dated 11/24/2002 9:50:15 PM Central Standard Time,

kabrowder@... writes:

> Thanks! I saw the picture of your girls and they are very pretty. Looks

> like they are all doing very well.

>

The thing we fight with the most is psuedomonas. We can't seem to get rid of

it with my oldest. We have been trying since year ago in Oct. She has had two

sinus surgery's and we think the psuedomonas is in her nose. Which is better

then her lungs but we are worried if we don't get rid of it from her nose it

will soon be in her lungs. Right now they are thinking about putting tubes in

her nose to see if we can get rid of the psuedomonas in her nose. Since we

have tried everything else. Hopefully we will find out sometime this week. My

oldest was not diagnosed until she was 6 years old and my youngest was almost

2. They look very healthy and act really healthy but you can see what is

going on in the inside. Deb A

[Guest guest]

Welcome Keely! Both my children have alpha-1-antitrypsin deficiency, and

has CF as well. Gosh, I am happy to see another person on the list

with both defects together. We got the same story -- they had never seen

anyone with both. May I ask what phenotype your daughter is? My son is

SZ (daughter too).

had liver problems as well, which is why they picked up the

alpha-1. He was started on Ursodiol at 16 months of age and his liver

numbers are now within normal range. My daughter has been pretty much

symptomless, but now that I know about the alpha-1 I am seeing patterns

when she gets a virus that show that her liver is overworked. She gets

diarrhea and has 7-9 days of fever for just a viral illness. She also

had one virus where she ended up with nosebleeds and an enlarged liver.

Otherwise she is doing just fine and when well, her liver numbers are

pretty much in the normal range.

has had mostly GI involvement as well, but is currently doing just

fantastic, past the 50th percentile in height and weight, and happy and

healthy as can be. He has had colds and most of the time gets over them

just fine without antibiotics. So far (knock wood) he doesn't culture

any CF-typical bacteria.

Have they tested your 2.5 y/o for alpha-1?

Also, I know one other woman whose son has alpha-1 and CF. She has

alpha-1 herself. She is ZZ and her son is SZ. She is on the large CF

list, Cystic-L, and she is also on a smaller alpha-1 list. If you e-mail

me at mamabear@... I will connect you with the alpha-liver

mailing list I am on.

Welcome to the list! I would definitely like to stay in touch with you!

Feel free to e-mail me privately. Also, I see you have Bell South! Well,

where are you? (You can tell me offlist if you like.) I just wonder

because you said you went to another city where they had seen a child

with both defects -- we are seen at by Dr. Flotte at Shands in

Gainesville, FL.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Re: New here - Hello to all

Hi Keeley,

welcome to the list! There is at least one other mom on this list, whose

little son has both CF and A1AT deficiency. You can contact at

mamabear@...

Hope Leila keeps to do well.

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My

daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis.

She

had a meconium ileus that required a 15 day NICU stay, but no surgery.

We

were very surprised by the diagnosis, and I can't honestly say we're

used to

the idea yet. On the up side, her early diagnosis let us start

nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also

diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!!

None of

the doctors in our center have ever seen the 2 defects together, but we

have

traveled to another city to see a doctor that has. He still wasn't

able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now

her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote.

As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

[Guest guest]

, I am so happy to hear from you! I was really hoping we weren't alone.

My youngest daughter (Leila) is ZZ, and my older one (Hadley) is MM. The

amazing thing is, my older one not only doesn't have CF, she's not a carrier

either. We had a 1 in 16 chance of creating each of these kids and we got them

both.

Leila had prolonged jaundice and enlarged liver after birth, which is how they

picked up the A1AT deficiency. When they first looked at her phenotype, they

said she was ZZ, then they said her levels were too high to be ZZ and she must

be SZ. After looking again they decided she was a ZZ with better levels (12.6)

then they had ever seen for a ZZ. One of her Z's has a different band on it and

the docs think they have found a new mutation. Both my husband and I have given

blood so they can take a complete look at the gene and the unusual Z. The good

news for us is our levels are better and that gives us a better chance. I just

hope they stay that way.

Leila also takes ursodiol and at our last blood draw her liver numbers were

close to the upper range of normal. We will have another set drawn at the

beginning on January.

It's wonderful to hear that is doing so well. We have our 4 month well

baby check up tomorrow, so I'll have new height/weight stats then. Previously

she was at 50% for height and a little over that for weight. I know she has put

on more weight because she looks so fat!

I think we may live closer then you think. I would love to stay in touch too

and will email you privately.

Keeley

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My

daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis.

She

had a meconium ileus that required a 15 day NICU stay, but no surgery.

We

were very surprised by the diagnosis, and I can't honestly say we're

used to

the idea yet. On the up side, her early diagnosis let us start

nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also

diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!!

None of

the doctors in our center have ever seen the 2 defects together, but we

have

traveled to another city to see a doctor that has. He still wasn't

able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now

her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote.

As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

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

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.

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

[Guest guest]

, I am so happy to hear from you! I was really hoping we weren't alone.

My youngest daughter (Leila) is ZZ, and my older one (Hadley) is MM. The

amazing thing is, my older one not only doesn't have CF, she's not a carrier

either. We had a 1 in 16 chance of creating each of these kids and we got them

both.

Leila had prolonged jaundice and enlarged liver after birth, which is how they

picked up the A1AT deficiency. When they first looked at her phenotype, they

said she was ZZ, then they said her levels were too high to be ZZ and she must

be SZ. After looking again they decided she was a ZZ with better levels (12.6)

then they had ever seen for a ZZ. One of her Z's has a different band on it and

the docs think they have found a new mutation. Both my husband and I have given

blood so they can take a complete look at the gene and the unusual Z. The good

news for us is our levels are better and that gives us a better chance. I just

hope they stay that way.

Leila also takes ursodiol and at our last blood draw her liver numbers were

close to the upper range of normal. We will have another set drawn at the

beginning on January.

It's wonderful to hear that is doing so well. We have our 4 month well

baby check up tomorrow, so I'll have new height/weight stats then. Previously

she was at 50% for height and a little over that for weight. I know she has put

on more weight because she looks so fat!

I think we may live closer then you think. I would love to stay in touch too

and will email you privately.

Keeley

New here - Hello to all

> This group is very large, so now I realize I'm not alone....My

daughter

was born 4 months ago and shortly after diagnosed with cystic fibrosis.

She

had a meconium ileus that required a 15 day NICU stay, but no surgery.

We

were very surprised by the diagnosis, and I can't honestly say we're

used to

the idea yet. On the up side, her early diagnosis let us start

nutrition

therapy early and she is quite plump. Her problems so far have been

overwhelmingly GI related. She has had liver problems and was also

diagosed

with alpha-1 antitrypsin deficiency. Talk about a double whammy!!!

None of

the doctors in our center have ever seen the 2 defects together, but we

have

traveled to another city to see a doctor that has. He still wasn't

able to

give us any kind of idea what we might expect. A1AT deficiency is as

variable as CF, so the combination is impossible to predict. Right now

her

liver is improving, and we hope it continues. Is there anyone else out

there with both defects? I'd love to hear from you.

>

> I went back through some of the messages and read the tips you wrote.

As

a new person these help. I look forward to contributing in the future.

>

> Keeley, mom to 2.5 y/o nocf, and 4 months wcf

>

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

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.

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

[Guest guest]

my son 19 months now cultured pseudomonas an august wast put on Tobi for 28 days

and cipro, he was cultured again and it is gone!!! we just had another culture

last thursday and should get results tomorrow. but he seems just fine with no

cough right now so we are hopeful. i had read that once you got it you couldnt

get rid of it . but dr explained how early you catch it matters.

amy mom to nathan 19 mo w/cf

Re: New here - Hello to all

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A

[Guest guest]

my son 19 months now cultured pseudomonas an august wast put on Tobi for 28 days

and cipro, he was cultured again and it is gone!!! we just had another culture

last thursday and should get results tomorrow. but he seems just fine with no

cough right now so we are hopeful. i had read that once you got it you couldnt

get rid of it . but dr explained how early you catch it matters.

amy mom to nathan 19 mo w/cf

Re: New here - Hello to all

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A

[Guest guest]

my son 19 months now cultured pseudomonas an august wast put on Tobi for 28 days

and cipro, he was cultured again and it is gone!!! we just had another culture

last thursday and should get results tomorrow. but he seems just fine with no

cough right now so we are hopeful. i had read that once you got it you couldnt

get rid of it . but dr explained how early you catch it matters.

amy mom to nathan 19 mo w/cf

Re: New here - Hello to all

In a message dated 11/25/2002 7:57:39 PM Central Standard Time,

kabrowder@... writes:

> From what I understand, Pseudomonas is what all CF'ers have trouble with,

> right? Do you ever get rid of it once you have it? I hope the tubes can

> help your daughter.

There is a lot of different opinions on this. Our doctors tell us you do get

rid of psuedomonas. Deb A