New to Group

[Guest guest]

Hi Becky,

welcome to the list! Obviously Sarine has great caregivers, who try

to stay on top of everything.

Have you tried oral NAC (n-acetylcystein) to prevent blockages

already? It's part of the German CF routine, so almost all pwcf get

it here. It's questionable, whether it reaches the lung via the

bloodstream, but at least it should help the bowel with its mucolytic

properties. It comes as bubble tablets, not too bad tasting. Maybe

that helps. Fiona has taken it ever since her dx and has no problems

with obstruction, but then we don't know if it would be the same

without the NAC.

Hope we can give you some support here during this rough time.

Fortunately Fiona doesn't have PA yet (touch wood). Although I am

pretty realistic I know that the first lab report with PA will be a

shock for us too.

Peace

Torsten, dad of Fiona 5wcf

[Guest guest]

Hi Becky,

welcome to the list! Obviously Sarine has great caregivers, who try

to stay on top of everything.

Have you tried oral NAC (n-acetylcystein) to prevent blockages

already? It's part of the German CF routine, so almost all pwcf get

it here. It's questionable, whether it reaches the lung via the

bloodstream, but at least it should help the bowel with its mucolytic

properties. It comes as bubble tablets, not too bad tasting. Maybe

that helps. Fiona has taken it ever since her dx and has no problems

with obstruction, but then we don't know if it would be the same

without the NAC.

Hope we can give you some support here during this rough time.

Fortunately Fiona doesn't have PA yet (touch wood). Although I am

pretty realistic I know that the first lab report with PA will be a

shock for us too.

Peace

Torsten, dad of Fiona 5wcf

[Guest guest]

Has she been put on Prilosec or Zantac? A lot of CF patients use that to help

the enzymes get

to the intestines.

> Hello, I am new to the group, just joined yesterday. I am a

> stepmother to Sarine (8 1/2 w/CF, diagnosed at birth). She has been

> ALL GI until December 2001. She cultured positive for PA at the end

> of November but her CF Team failed to notify us until Sarine's mom

> contacted them about a persistant cough in March 2002! Needless to

> say we were surprised and devastated at the same time. She has been

> on Xopenex, Pulmozyme, and Serevent for a few years and with the

> discovery of PA they put her on injection Fortaz and injection TOBI

> for 2 weeks and we are now finishing up on nebulizer TOBI for another

> 2 weeks and then she goes back to clinic for another culture in 4

> weeks to see if the PA is gone. Apparently cultures take 4 days to

> get the results back so we WILL be calling after every culture to get

> the results to make sure nothing falls through the cracks. The

> pulmonary problems are all new to us so we (her mom, dad, stepmom,

> stepdad-ALL VERY CLOSE)are doing tons of research on all the meds

> available. Apparently there is a controversy in the CF community over

> the aggressive use of antibiotic therapy (TOBI) and her team as well

> as all of her parents agree upon the fact that we would like to

> persue the aggresive antibiotic therapy. We hope that the antibiotics

> will wipe out the colony but her doctors think it will just beat it

> down! We are all nervous but keeping our fingers crossed! My question

> for all of you today is a GI question. Sarine has a history of

> blockages once a year on average so her doctors have tried many

> different meds. She has been on Propulsid, but WE took her off of it

> because of the horrendous medical problems it can cause, and it

> didn't help. The last two years she has been on Miralax, which WE

> have also just taken her off of. I haven't read any research that

> indicates that daily use of laxatives are anything other than

> harmful. Does anyone have any suggestions on any other meds we might

> try. We are anti-meds without a reason. We always research each new

> drug they give her and try it for a while and see how it works, if no

> good response we take her off. We as parents should be their biggest

> advocate and its up to us to protect them so we really try to

> question and research ALOT! I am sure her doctors love to see us

> coming, we always have a list of questions and question everything

> they do! We are now trying Nexium, her new GI dr. thinks the acid in

> her stomach is causing her Creon to disolve before it gets to where

> it needs to be. We are also going to be doing a fecal study to see

> what the fat content in her stool is. They are going to try and mess

> around with the dosage of her Creon! So far they are unable to tell

> us what keeps causing her blockages and we are extremely frustrated.

> She has had 2 in the last 4 months, 58 days apart, the second one as

> severe as she has ever had! They put an NG tube in and run GoLitely

> thru her for several days and ususally try an enema and laxatives

> till she starts moving. We have tried changing her diet to high fiber

> with no great results, she just had a colonoscopy with no results to

> indicate that is the problem. I would love to hear anyones tips or

> info. on how to keep her moving (she goes all the time, but some of

> it always gets stuck until she is backed up)! Any other helpful

> advice is also welcome. Thanks for listening, I hope this group can

> help me deal with the depression we have started to feel since

> finding out about her PA.

>

> Becky (stepmom to Sarine 8 1/2 w/cf)

[Guest guest]

Has she been put on Prilosec or Zantac? A lot of CF patients use that to help

the enzymes get

to the intestines.

> Hello, I am new to the group, just joined yesterday. I am a

> stepmother to Sarine (8 1/2 w/CF, diagnosed at birth). She has been

> ALL GI until December 2001. She cultured positive for PA at the end

> of November but her CF Team failed to notify us until Sarine's mom

> contacted them about a persistant cough in March 2002! Needless to

> say we were surprised and devastated at the same time. She has been

> on Xopenex, Pulmozyme, and Serevent for a few years and with the

> discovery of PA they put her on injection Fortaz and injection TOBI

> for 2 weeks and we are now finishing up on nebulizer TOBI for another

> 2 weeks and then she goes back to clinic for another culture in 4

> weeks to see if the PA is gone. Apparently cultures take 4 days to

> get the results back so we WILL be calling after every culture to get

> the results to make sure nothing falls through the cracks. The

> pulmonary problems are all new to us so we (her mom, dad, stepmom,

> stepdad-ALL VERY CLOSE)are doing tons of research on all the meds

> available. Apparently there is a controversy in the CF community over

> the aggressive use of antibiotic therapy (TOBI) and her team as well

> as all of her parents agree upon the fact that we would like to

> persue the aggresive antibiotic therapy. We hope that the antibiotics

> will wipe out the colony but her doctors think it will just beat it

> down! We are all nervous but keeping our fingers crossed! My question

> for all of you today is a GI question. Sarine has a history of

> blockages once a year on average so her doctors have tried many

> different meds. She has been on Propulsid, but WE took her off of it

> because of the horrendous medical problems it can cause, and it

> didn't help. The last two years she has been on Miralax, which WE

> have also just taken her off of. I haven't read any research that

> indicates that daily use of laxatives are anything other than

> harmful. Does anyone have any suggestions on any other meds we might

> try. We are anti-meds without a reason. We always research each new

> drug they give her and try it for a while and see how it works, if no

> good response we take her off. We as parents should be their biggest

> advocate and its up to us to protect them so we really try to

> question and research ALOT! I am sure her doctors love to see us

> coming, we always have a list of questions and question everything

> they do! We are now trying Nexium, her new GI dr. thinks the acid in

> her stomach is causing her Creon to disolve before it gets to where

> it needs to be. We are also going to be doing a fecal study to see

> what the fat content in her stool is. They are going to try and mess

> around with the dosage of her Creon! So far they are unable to tell

> us what keeps causing her blockages and we are extremely frustrated.

> She has had 2 in the last 4 months, 58 days apart, the second one as

> severe as she has ever had! They put an NG tube in and run GoLitely

> thru her for several days and ususally try an enema and laxatives

> till she starts moving. We have tried changing her diet to high fiber

> with no great results, she just had a colonoscopy with no results to

> indicate that is the problem. I would love to hear anyones tips or

> info. on how to keep her moving (she goes all the time, but some of

> it always gets stuck until she is backed up)! Any other helpful

> advice is also welcome. Thanks for listening, I hope this group can

> help me deal with the depression we have started to feel since

> finding out about her PA.

>

> Becky (stepmom to Sarine 8 1/2 w/cf)

[Guest guest]

Becky,

First of all, welcome to the group. Although you think you are new to this

you sound very educated on the subject of CF already~ which is great. You are

and will continue to be a great advocate for Sarine. You are doing all the

right things. I think all CF families are alike, in the question asking

department. We always have a list ready too, and we sure give the residents a

run for their money. I know Allie's, my daughter's, CF doctor sent a resident

and 5 medical students in to meet us while Allie was hospitalized. We gave them

a run for their money! :-) All in good fun of course. The doctors who become

pediatric pulmonologists, or pediatricians for that matter know what they are

getting into. They do a residency, so they observe another doctor and meet

families and see them. I think it is inherent with any pediatric issue to have

parents ask a lot of questions. After all, our children are our most precious

possession. Don't sweat the question asking. As a matter of fact, if they know

you to be a question asker, maybe they will be more prepared to give you info,

knowing that you are educated on most CF matters. Keep up the good work.

Although my child doesn't have major GI complications, and no obstructions yet,

knock on wood, many people on this list can help you with that. My daughter has

mostly pulmonary complications.

As for the depression, well I can speak to that. I had never been

depressed in my life,

until my Allie was diagnosed with CF. I have felt so little control and no

matter how hard I worked, how many PTs I did, how much I cleaned my house, she

still cultured PA. Very frustrating and discouraging. My thoughts on

depression are that it is a side effect of CF. Most parents on this list have

dealt with it at some point or another. I wouldn't even label it as depression.

It is more a grieving process. Grieving over the loss of health in our child and

anticipatory grieving for what we know could happen to our children. How

quickly any of us go through this process is highly individual. So if you start

to feel it, don't knock yourself down for feeling it. It is completely normal

and most anyone in our shoes would feel it too..

Hope this

helps

Love,

, mom of

Allie 3wcf, and Connor 2 nocf

New to group

Hello, I am new to the group, just joined yesterday. I am a

stepmother to Sarine (8 1/2 w/CF, diagnosed at birth). She has been

ALL GI until December 2001. She cultured positive for PA at the end

of November but her CF Team failed to notify us until Sarine's mom

contacted them about a persistant cough in March 2002! Needless to

say we were surprised and devastated at the same time. She has been

on Xopenex, Pulmozyme, and Serevent for a few years and with the

discovery of PA they put her on injection Fortaz and injection TOBI

for 2 weeks and we are now finishing up on nebulizer TOBI for another

2 weeks and then she goes back to clinic for another culture in 4

weeks to see if the PA is gone. Apparently cultures take 4 days to

get the results back so we WILL be calling after every culture to get

the results to make sure nothing falls through the cracks. The

pulmonary problems are all new to us so we (her mom, dad, stepmom,

stepdad-ALL VERY CLOSE)are doing tons of research on all the meds

available. Apparently there is a controversy in the CF community over

the aggressive use of antibiotic therapy (TOBI) and her team as well

as all of her parents agree upon the fact that we would like to

persue the aggresive antibiotic therapy. We hope that the antibiotics

will wipe out the colony but her doctors think it will just beat it

down! We are all nervous but keeping our fingers crossed! My question

for all of you today is a GI question. Sarine has a history of

blockages once a year on average so her doctors have tried many

different meds. She has been on Propulsid, but WE took her off of it

because of the horrendous medical problems it can cause, and it

didn't help. The last two years she has been on Miralax, which WE

have also just taken her off of. I haven't read any research that

indicates that daily use of laxatives are anything other than

harmful. Does anyone have any suggestions on any other meds we might

try. We are anti-meds without a reason. We always research each new

drug they give her and try it for a while and see how it works, if no

good response we take her off. We as parents should be their biggest

advocate and its up to us to protect them so we really try to

question and research ALOT! I am sure her doctors love to see us

coming, we always have a list of questions and question everything

they do! We are now trying Nexium, her new GI dr. thinks the acid in

her stomach is causing her Creon to disolve before it gets to where

it needs to be. We are also going to be doing a fecal study to see

what the fat content in her stool is. They are going to try and mess

around with the dosage of her Creon! So far they are unable to tell

us what keeps causing her blockages and we are extremely frustrated.

She has had 2 in the last 4 months, 58 days apart, the second one as

severe as she has ever had! They put an NG tube in and run GoLitely

thru her for several days and ususally try an enema and laxatives

till she starts moving. We have tried changing her diet to high fiber

with no great results, she just had a colonoscopy with no results to

indicate that is the problem. I would love to hear anyones tips or

info. on how to keep her moving (she goes all the time, but some of

it always gets stuck until she is backed up)! Any other helpful

advice is also welcome. Thanks for listening, I hope this group can

help me deal with the depression we have started to feel since

finding out about her PA.

Becky (stepmom to Sarine 8 1/2 w/cf)

PLEASE do not post religious emails to the 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.

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

[Guest guest]

Becky,

First of all, welcome to the group. Although you think you are new to this

you sound very educated on the subject of CF already~ which is great. You are

and will continue to be a great advocate for Sarine. You are doing all the

right things. I think all CF families are alike, in the question asking

department. We always have a list ready too, and we sure give the residents a

run for their money. I know Allie's, my daughter's, CF doctor sent a resident

and 5 medical students in to meet us while Allie was hospitalized. We gave them

a run for their money! :-) All in good fun of course. The doctors who become

pediatric pulmonologists, or pediatricians for that matter know what they are

getting into. They do a residency, so they observe another doctor and meet

families and see them. I think it is inherent with any pediatric issue to have

parents ask a lot of questions. After all, our children are our most precious

possession. Don't sweat the question asking. As a matter of fact, if they know

you to be a question asker, maybe they will be more prepared to give you info,

knowing that you are educated on most CF matters. Keep up the good work.

Although my child doesn't have major GI complications, and no obstructions yet,

knock on wood, many people on this list can help you with that. My daughter has

mostly pulmonary complications.

As for the depression, well I can speak to that. I had never been

depressed in my life,

until my Allie was diagnosed with CF. I have felt so little control and no

matter how hard I worked, how many PTs I did, how much I cleaned my house, she

still cultured PA. Very frustrating and discouraging. My thoughts on

depression are that it is a side effect of CF. Most parents on this list have

dealt with it at some point or another. I wouldn't even label it as depression.

It is more a grieving process. Grieving over the loss of health in our child and

anticipatory grieving for what we know could happen to our children. How

quickly any of us go through this process is highly individual. So if you start

to feel it, don't knock yourself down for feeling it. It is completely normal

and most anyone in our shoes would feel it too..

Hope this

helps

Love,

, mom of

Allie 3wcf, and Connor 2 nocf

New to group

Hello, I am new to the group, just joined yesterday. I am a

stepmother to Sarine (8 1/2 w/CF, diagnosed at birth). She has been

ALL GI until December 2001. She cultured positive for PA at the end

of November but her CF Team failed to notify us until Sarine's mom

contacted them about a persistant cough in March 2002! Needless to

say we were surprised and devastated at the same time. She has been

on Xopenex, Pulmozyme, and Serevent for a few years and with the

discovery of PA they put her on injection Fortaz and injection TOBI

for 2 weeks and we are now finishing up on nebulizer TOBI for another

2 weeks and then she goes back to clinic for another culture in 4

weeks to see if the PA is gone. Apparently cultures take 4 days to

get the results back so we WILL be calling after every culture to get

the results to make sure nothing falls through the cracks. The

pulmonary problems are all new to us so we (her mom, dad, stepmom,

stepdad-ALL VERY CLOSE)are doing tons of research on all the meds

available. Apparently there is a controversy in the CF community over

the aggressive use of antibiotic therapy (TOBI) and her team as well

as all of her parents agree upon the fact that we would like to

persue the aggresive antibiotic therapy. We hope that the antibiotics

will wipe out the colony but her doctors think it will just beat it

down! We are all nervous but keeping our fingers crossed! My question

for all of you today is a GI question. Sarine has a history of

blockages once a year on average so her doctors have tried many

different meds. She has been on Propulsid, but WE took her off of it

because of the horrendous medical problems it can cause, and it

didn't help. The last two years she has been on Miralax, which WE

have also just taken her off of. I haven't read any research that

indicates that daily use of laxatives are anything other than

harmful. Does anyone have any suggestions on any other meds we might

try. We are anti-meds without a reason. We always research each new

drug they give her and try it for a while and see how it works, if no

good response we take her off. We as parents should be their biggest

advocate and its up to us to protect them so we really try to

question and research ALOT! I am sure her doctors love to see us

coming, we always have a list of questions and question everything

they do! We are now trying Nexium, her new GI dr. thinks the acid in

her stomach is causing her Creon to disolve before it gets to where

it needs to be. We are also going to be doing a fecal study to see

what the fat content in her stool is. They are going to try and mess

around with the dosage of her Creon! So far they are unable to tell

us what keeps causing her blockages and we are extremely frustrated.

She has had 2 in the last 4 months, 58 days apart, the second one as

severe as she has ever had! They put an NG tube in and run GoLitely

thru her for several days and ususally try an enema and laxatives

till she starts moving. We have tried changing her diet to high fiber

with no great results, she just had a colonoscopy with no results to

indicate that is the problem. I would love to hear anyones tips or

info. on how to keep her moving (she goes all the time, but some of

it always gets stuck until she is backed up)! Any other helpful

advice is also welcome. Thanks for listening, I hope this group can

help me deal with the depression we have started to feel since

finding out about her PA.

Becky (stepmom to Sarine 8 1/2 w/cf)

PLEASE do not post religious emails to the 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.

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

[Guest guest]

Becky,

First of all, welcome to the group. Although you think you are new to this

you sound very educated on the subject of CF already~ which is great. You are

and will continue to be a great advocate for Sarine. You are doing all the

right things. I think all CF families are alike, in the question asking

department. We always have a list ready too, and we sure give the residents a

run for their money. I know Allie's, my daughter's, CF doctor sent a resident

and 5 medical students in to meet us while Allie was hospitalized. We gave them

a run for their money! :-) All in good fun of course. The doctors who become

pediatric pulmonologists, or pediatricians for that matter know what they are

getting into. They do a residency, so they observe another doctor and meet

families and see them. I think it is inherent with any pediatric issue to have

parents ask a lot of questions. After all, our children are our most precious

possession. Don't sweat the question asking. As a matter of fact, if they know

you to be a question asker, maybe they will be more prepared to give you info,

knowing that you are educated on most CF matters. Keep up the good work.

Although my child doesn't have major GI complications, and no obstructions yet,

knock on wood, many people on this list can help you with that. My daughter has

mostly pulmonary complications.

As for the depression, well I can speak to that. I had never been

depressed in my life,

until my Allie was diagnosed with CF. I have felt so little control and no

matter how hard I worked, how many PTs I did, how much I cleaned my house, she

still cultured PA. Very frustrating and discouraging. My thoughts on

depression are that it is a side effect of CF. Most parents on this list have

dealt with it at some point or another. I wouldn't even label it as depression.

It is more a grieving process. Grieving over the loss of health in our child and

anticipatory grieving for what we know could happen to our children. How

quickly any of us go through this process is highly individual. So if you start

to feel it, don't knock yourself down for feeling it. It is completely normal

and most anyone in our shoes would feel it too..

Hope this

helps

Love,

, mom of

Allie 3wcf, and Connor 2 nocf

New to group

Hello, I am new to the group, just joined yesterday. I am a

stepmother to Sarine (8 1/2 w/CF, diagnosed at birth). She has been

ALL GI until December 2001. She cultured positive for PA at the end

of November but her CF Team failed to notify us until Sarine's mom

contacted them about a persistant cough in March 2002! Needless to

say we were surprised and devastated at the same time. She has been

on Xopenex, Pulmozyme, and Serevent for a few years and with the

discovery of PA they put her on injection Fortaz and injection TOBI

for 2 weeks and we are now finishing up on nebulizer TOBI for another

2 weeks and then she goes back to clinic for another culture in 4

weeks to see if the PA is gone. Apparently cultures take 4 days to

get the results back so we WILL be calling after every culture to get

the results to make sure nothing falls through the cracks. The

pulmonary problems are all new to us so we (her mom, dad, stepmom,

stepdad-ALL VERY CLOSE)are doing tons of research on all the meds

available. Apparently there is a controversy in the CF community over

the aggressive use of antibiotic therapy (TOBI) and her team as well

as all of her parents agree upon the fact that we would like to

persue the aggresive antibiotic therapy. We hope that the antibiotics

will wipe out the colony but her doctors think it will just beat it

down! We are all nervous but keeping our fingers crossed! My question

for all of you today is a GI question. Sarine has a history of

blockages once a year on average so her doctors have tried many

different meds. She has been on Propulsid, but WE took her off of it

because of the horrendous medical problems it can cause, and it

didn't help. The last two years she has been on Miralax, which WE

have also just taken her off of. I haven't read any research that

indicates that daily use of laxatives are anything other than

harmful. Does anyone have any suggestions on any other meds we might

try. We are anti-meds without a reason. We always research each new

drug they give her and try it for a while and see how it works, if no

good response we take her off. We as parents should be their biggest

advocate and its up to us to protect them so we really try to

question and research ALOT! I am sure her doctors love to see us

coming, we always have a list of questions and question everything

they do! We are now trying Nexium, her new GI dr. thinks the acid in

her stomach is causing her Creon to disolve before it gets to where

it needs to be. We are also going to be doing a fecal study to see

what the fat content in her stool is. They are going to try and mess

around with the dosage of her Creon! So far they are unable to tell

us what keeps causing her blockages and we are extremely frustrated.

She has had 2 in the last 4 months, 58 days apart, the second one as

severe as she has ever had! They put an NG tube in and run GoLitely

thru her for several days and ususally try an enema and laxatives

till she starts moving. We have tried changing her diet to high fiber

with no great results, she just had a colonoscopy with no results to

indicate that is the problem. I would love to hear anyones tips or

info. on how to keep her moving (she goes all the time, but some of

it always gets stuck until she is backed up)! Any other helpful

advice is also welcome. Thanks for listening, I hope this group can

help me deal with the depression we have started to feel since

finding out about her PA.

Becky (stepmom to Sarine 8 1/2 w/cf)

PLEASE do not post religious emails to the 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.

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

[Guest guest]

Traci takes 10cc of Enulose 2x daily.

[Guest guest]

Traci takes 10cc of Enulose 2x daily.

[Guest guest]

In a message dated 4/26/2002 12:50:35 PM Central Standard Time,

4GIVEN5@... writes:

> As for the depression, well I can speak to that. I had never been

> depressed in my life,

> until my Allie was diagnosed with CF. I have felt so little control and no

> matter how hard I worked, how many PTs I did, how much I cleaned my house,

> she still cultured PA. Very frustrating and discouraging. My thoughts on

> depression are that it is a side effect of CF. Most parents on this list

> have dealt with it at some point or another. I wouldn't even label it as

> depression. It is more a grieving process. Grieving over the loss of

> health in our child and anticipatory grieving for what we know could happen

> to our children. How quickly any of us go through this process is highly

> individual. So if you start to feel it, don't knock yourself down for

> feeling it. It is completely normal and most anyone in our shoes would

> feel it too..

,

So well said!! Thanks Deb A

[Guest guest]

In a message dated 4/26/2002 12:50:35 PM Central Standard Time,

4GIVEN5@... writes:

> As for the depression, well I can speak to that. I had never been

> depressed in my life,

> until my Allie was diagnosed with CF. I have felt so little control and no

> matter how hard I worked, how many PTs I did, how much I cleaned my house,

> she still cultured PA. Very frustrating and discouraging. My thoughts on

> depression are that it is a side effect of CF. Most parents on this list

> have dealt with it at some point or another. I wouldn't even label it as

> depression. It is more a grieving process. Grieving over the loss of

> health in our child and anticipatory grieving for what we know could happen

> to our children. How quickly any of us go through this process is highly

> individual. So if you start to feel it, don't knock yourself down for

> feeling it. It is completely normal and most anyone in our shoes would

> feel it too..

,

So well said!! Thanks Deb A

[Guest guest]

Hi,

My son has been on the GFCF and Soyafree diet and very

recently we started the SCD. Yes it makes a difference

in his eye contact, emotional behaviour towards

everybody and he is alot more quiet as he used to be

jumping with a turbo engine.

--- ezpartiesrus ezpartiesrus@...> wrote:

> Hello,

>

> I am new to the board. My name is Eve and my son has

> major stomach

> problems along with being a very picky eater and

> being autistic. My

> son has been GF CF for several months. The diet

> helped eye contact

> and other little improvements. He is still having

> stomach problems

> and will soon be going in for a colonoscopy

> (spelling?) He jsut had

> an upper GI which showed no signs of any problems.

> Whew.

>

> I would like to know if any of you have also been on

> the GF CF then

> went to SCD and saw further improvments?

>

> Also, since my son is casein free, my understanding

> is if you make

> the homemade yougurt that it still remains casein

> free. Am I

> understanding that correctly? Can you do both the CF

> GF and the SCD

> together?

>

> Has anyone purchased the yougurt maker on the

> scdkitchen website? Is

> it any good? Is it worth getting?

>

> Thank you,

> Eve

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Dear Eve,

My own son had normal, pain free bm's within 3 days pf starting the scd diet

after years of agony. He had to have enemas nearly every day proir to this. He

has had a couple of flare ups but generally excellent stomach improvement. We

are only 4 mths into the diet and he is still very picky but is eating a much

more balanced diet on scd than gfcf. We do the yoghurt but not the cheese as we

can't get hold of the recommended cheese. Even if he rejects all the foods at

first he won't starve, just rotate and keep offering it in a positive way.

Check all supplements and labels for starch, phone up the companies as they

don't always tell you, KM's are good. I would personally never go back to gfcf,

and we are keeping him on this yoghurt, it is incredibly healing and nutritious

for a damaged stomach, all those probiotics!!

Wishing you and your little boy a good start on the scd.

Kind Regards,

Sue Lawson, UK

, 7, asd, scd 4 mths

Quoting ezpartiesrus ezpartiesrus@...>:

>

>

>

>

> Hello,

>

>

>

> I am new to the board. My name is Eve and my son has major stomach

>

> problems along with being a very picky eater and being autistic. My

>

> son has been GF CF for several months. The diet helped eye contact

>

> and other little improvements. He is still having stomach problems

>

> and will soon be going in for a colonoscopy (spelling?) He jsut had

>

> an upper GI which showed no signs of any problems. Whew.

>

>

>

> I would like to know if any of you have also been on the GF CF then

>

> went to SCD and saw further improvments?

>

>

>

> Also, since my son is casein free, my understanding is if you make

>

> the homemade yougurt that it still remains casein free. Am I

>

> understanding that correctly? Can you do both the CF GF and the SCD

>

> together?

>

>

>

> Has anyone purchased the yougurt maker on the scdkitchen website? Is

>

> it any good? Is it worth getting?

>

>

>

> Thank you,

>

> Eve

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> For information on the Specific Carbohydrate Diet, please read the book

> _Breaking the Vicious Cycle_  by Elaine Gottschall and read the following

> websites:

>

> http://www.breakingtheviciouscycle.info

>

> and

>

> http://www.pecanbread.com

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Eve-

My sons were GF, CF and have many bowels problems. I put them both on this

diet, allowing them to have cheese and yogurt. My older son did fine with it,

after being CF for 2 years. My younger son, 2, had not ever had dairy before

and it took a little longer for him to get used to. I saw increased behavior

problems at first with the dairy, but not now. I did purchase the yogurt maker

from lucy's kitchen and it works great. Hope this helps.

Suzanne, 2 sons 4 and 2, on SCD 2 months

khalil ghandour jafapal48@...> wrote:

Hi,

My son has been on the GFCF and Soyafree diet and very

recently we started the SCD. Yes it makes a difference

in his eye contact, emotional behaviour towards

everybody and he is alot more quiet as he used to be

jumping with a turbo engine.

--- ezpartiesrus ezpartiesrus@...> wrote:

> Hello,

>

> I am new to the board. My name is Eve and my son has

> major stomach

> problems along with being a very picky eater and

> being autistic. My

> son has been GF CF for several months. The diet

> helped eye contact

> and other little improvements. He is still having

> stomach problems

> and will soon be going in for a colonoscopy

> (spelling?) He jsut had

> an upper GI which showed no signs of any problems.

> Whew.

>

> I would like to know if any of you have also been on

> the GF CF then

> went to SCD and saw further improvments?

>

> Also, since my son is casein free, my understanding

> is if you make

> the homemade yougurt that it still remains casein

> free. Am I

> understanding that correctly? Can you do both the CF

> GF and the SCD

> together?

>

> Has anyone purchased the yougurt maker on the

> scdkitchen website? Is

> it any good? Is it worth getting?

>

> Thank you,

> Eve

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

hi eve,

my 2 boys were GFCF for 2 yrs (in addition to avoiding many other

foods that were on the IgG positive antibody list). One of my boys

was always having loose BMs and the other tended to have C.

as soon as we started SCD they started having wonderful regular

healthy stools. well actually they didnt really do that till we

started using the almond yogurt. they really needed the yogurt to

get to where they are now. we did this all while staying casein free.

actually we just tested butter today since it should have very little

to no casein in it. before this we were using ghee. (fingers are

crossed).

donna

3 kids with celiac , SCD 8 months

1 of which had overgrowth of bacteria

1 of which had overgrowth of yeast

hubby scd 4 months

> Hello,

>

> I am new to the board. My name is Eve and my son has major stomach

> problems along with being a very picky eater and being autistic. My

> son has been GF CF for several months. The diet helped eye contact

> and other little improvements. He is still having stomach problems

> and will soon be going in for a colonoscopy (spelling?) He jsut had

> an upper GI which showed no signs of any problems. Whew.

>

> I would like to know if any of you have also been on the GF CF then

> went to SCD and saw further improvments?

>

> Also, since my son is casein free, my understanding is if you make

> the homemade yougurt that it still remains casein free. Am I

> understanding that correctly? Can you do both the CF GF and the SCD

> together?

>

> Has anyone purchased the yougurt maker on the scdkitchen website?

Is

> it any good? Is it worth getting?

>

> Thank you,

> Eve

[Guest guest]

Hi. My husband was diagnosed with PSC four years ago. He has been

getting the ERCP's but they referred him to a liver doctor this last

time. I think things are starting to sink this time around. He is so

angry about the situation (and scared). I think part of it is not

knowing what is going to come next and when it will come.

Any advise on how to deal with all of this would be great. I liked the

doctor that we have (Indiana University Hospital), but would appreciate

any updates anyone could give me.

Thanks for your helf and support.

Tammy