CF baby born in Africa - no CF specialists

[Mummy]

Hello

I am a 25yr old mother, whose baby has been diagnosed with CF.
I live in Tanzania, Africa which is a 3rd world country.... I had a son two years ago, who kept on coughing and vomitting, but no matter what drs we went to, we got no results. He died at age 3 1/2 months and finally we were told that the reason might have been due to metabolic disorders.
Both me and my husband went overseas to get ourselves tested, as no tests available out here. We both had good results. However when our daughter was born September 2009, we took her over seas too. Thank the Lord that just before leaving there, a doctor thought of doing a sweat test as she lost weight.
She tested positive 3 times and was diagnosed with CF. Soon after she started coughing severely and was admitted out there for 2 weeks.

She is currently on nebs with Normal Saline and ventolin twice a day, CPT x2. Also has ADEK's, folic acid, Zinc.
She also takes creone 25000 before each feed.
I have no idea what CF mutation she has for we did not do the genetic testing!

We have just come back now and are in search of doctors for her but no CF centres out here.

We finally found a paediatrician yesterday who has some ideas about CF but is no specialist.

She has a low haemoglobin count - 9.6 and he suggested to put her on iron drops
he says her cough is bad and we should add budesonide to her nebs. Any one has any ideas on it.... i dont see anything positive on the net on this med.
She is 3 months and a week old now, is it ok for her to use it?

I am also worried about her weight....... she is simply not gaining!!
She was born at 2.78 kgs. At one month she weighed 3.3 kgs.......then she began to lose, came back to 3.3 kgs...... and this has been going on till now.... Never exceeding 3.4 kgs.....

I started her on Caprilon Formula (for fat malabsorption) 3 weeks ago (along with breast milk).... She seems to have more meat, but doesnt weigh any more....
Yesterday i noticed her calves and feet have begun swelling again (they had treated it at the hospital overseas, but i dont know how)
Please advice

 

[Mummy]

Hello

I am a 25yr old mother, whose baby has been diagnosed with CF.
I live in Tanzania, Africa which is a 3rd world country.... I had a son two years ago, who kept on coughing and vomitting, but no matter what drs we went to, we got no results. He died at age 3 1/2 months and finally we were told that the reason might have been due to metabolic disorders.
Both me and my husband went overseas to get ourselves tested, as no tests available out here. We both had good results. However when our daughter was born September 2009, we took her over seas too. Thank the Lord that just before leaving there, a doctor thought of doing a sweat test as she lost weight.
She tested positive 3 times and was diagnosed with CF. Soon after she started coughing severely and was admitted out there for 2 weeks.

She is currently on nebs with Normal Saline and ventolin twice a day, CPT x2. Also has ADEK's, folic acid, Zinc.
She also takes creone 25000 before each feed.
I have no idea what CF mutation she has for we did not do the genetic testing!

We have just come back now and are in search of doctors for her but no CF centres out here.

We finally found a paediatrician yesterday who has some ideas about CF but is no specialist.

She has a low haemoglobin count - 9.6 and he suggested to put her on iron drops
he says her cough is bad and we should add budesonide to her nebs. Any one has any ideas on it.... i dont see anything positive on the net on this med.
She is 3 months and a week old now, is it ok for her to use it?

I am also worried about her weight....... she is simply not gaining!!
She was born at 2.78 kgs. At one month she weighed 3.3 kgs.......then she began to lose, came back to 3.3 kgs...... and this has been going on till now.... Never exceeding 3.4 kgs.....

I started her on Caprilon Formula (for fat malabsorption) 3 weeks ago (along with breast milk).... She seems to have more meat, but doesnt weigh any more....
Yesterday i noticed her calves and feet have begun swelling again (they had treated it at the hospital overseas, but i dont know how)
Please advice

 

[Mummy]

Hello

I am a 25yr old mother, whose baby has been diagnosed with CF.
I live in Tanzania, Africa which is a 3rd world country.... I had a son two years ago, who kept on coughing and vomitting, but no matter what drs we went to, we got no results. He died at age 3 1/2 months and finally we were told that the reason might have been due to metabolic disorders.
Both me and my husband went overseas to get ourselves tested, as no tests available out here. We both had good results. However when our daughter was born September 2009, we took her over seas too. Thank the Lord that just before leaving there, a doctor thought of doing a sweat test as she lost weight.
She tested positive 3 times and was diagnosed with CF. Soon after she started coughing severely and was admitted out there for 2 weeks.

She is currently on nebs with Normal Saline and ventolin twice a day, CPT x2. Also has ADEK's, folic acid, Zinc.
She also takes creone 25000 before each feed.
I have no idea what CF mutation she has for we did not do the genetic testing!

We have just come back now and are in search of doctors for her but no CF centres out here.

We finally found a paediatrician yesterday who has some ideas about CF but is no specialist.

She has a low haemoglobin count - 9.6 and he suggested to put her on iron drops
he says her cough is bad and we should add budesonide to her nebs. Any one has any ideas on it.... i dont see anything positive on the net on this med.
She is 3 months and a week old now, is it ok for her to use it?

I am also worried about her weight....... she is simply not gaining!!
She was born at 2.78 kgs. At one month she weighed 3.3 kgs.......then she began to lose, came back to 3.3 kgs...... and this has been going on till now.... Never exceeding 3.4 kgs.....

I started her on Caprilon Formula (for fat malabsorption) 3 weeks ago (along with breast milk).... She seems to have more meat, but doesnt weigh any more....
Yesterday i noticed her calves and feet have begun swelling again (they had treated it at the hospital overseas, but i dont know how)
Please advice

 

[Mummy]

Hello

I am a 25yr old mother, whose baby has been diagnosed with CF.
I live in Tanzania, Africa which is a 3rd world country.... I had a son two years ago, who kept on coughing and vomitting, but no matter what drs we went to, we got no results. He died at age 3 1/2 months and finally we were told that the reason might have been due to metabolic disorders.
Both me and my husband went overseas to get ourselves tested, as no tests available out here. We both had good results. However when our daughter was born September 2009, we took her over seas too. Thank the Lord that just before leaving there, a doctor thought of doing a sweat test as she lost weight.
She tested positive 3 times and was diagnosed with CF. Soon after she started coughing severely and was admitted out there for 2 weeks.

She is currently on nebs with Normal Saline and ventolin twice a day, CPT x2. Also has ADEK's, folic acid, Zinc.
She also takes creone 25000 before each feed.
I have no idea what CF mutation she has for we did not do the genetic testing!

We have just come back now and are in search of doctors for her but no CF centres out here.

We finally found a paediatrician yesterday who has some ideas about CF but is no specialist.

She has a low haemoglobin count - 9.6 and he suggested to put her on iron drops
he says her cough is bad and we should add budesonide to her nebs. Any one has any ideas on it.... i dont see anything positive on the net on this med.
She is 3 months and a week old now, is it ok for her to use it?

I am also worried about her weight....... she is simply not gaining!!
She was born at 2.78 kgs. At one month she weighed 3.3 kgs.......then she began to lose, came back to 3.3 kgs...... and this has been going on till now.... Never exceeding 3.4 kgs.....

I started her on Caprilon Formula (for fat malabsorption) 3 weeks ago (along with breast milk).... She seems to have more meat, but doesnt weigh any more....
Yesterday i noticed her calves and feet have begun swelling again (they had treated it at the hospital overseas, but i dont know how)
Please advice

 

[Mummy]

Hello
<br />
<br />I am a 25yr old mother, whose baby has been diagnosed with CF.
<br />I live in Tanzania, Africa which is a 3rd world country.... I had a son two years ago, who kept on coughing and vomitting, but no matter what drs we went to, we got no results. He died at age 3 1/2 months and finally we were told that the reason might have been due to metabolic disorders.
<br />Both me and my husband went overseas to get ourselves tested, as no tests available out here. We both had good results. However when our daughter was born September 2009, we took her over seas too. Thank the Lord that just before leaving there, a doctor thought of doing a sweat test as she lost weight.
<br />She tested positive 3 times and was diagnosed with CF. Soon after she started coughing severely and was admitted out there for 2 weeks.
<br />
<br />She is currently on nebs with Normal Saline and ventolin twice a day, CPT x2. Also has ADEK's, folic acid, Zinc.
<br />She also takes creone 25000 before each feed.
<br />I have no idea what CF mutation she has for we did not do the genetic testing!
<br />
<br />We have just come back now and are in search of doctors for her but no CF centres out here.
<br />
<br />We finally found a paediatrician yesterday who has some ideas about CF but is no specialist.
<br />
<br />She has a low haemoglobin count - 9.6 and he suggested to put her on iron drops
<br />he says her cough is bad and we should add budesonide to her nebs. Any one has any ideas on it.... i dont see anything positive on the net on this med.
<br />She is 3 months and a week old now, is it ok for her to use it?
<br />
<br />I am also worried about her weight....... she is simply not gaining!!
<br />She was born at 2.78 kgs. At one month she weighed 3.3 kgs.......then she began to lose, came back to 3.3 kgs...... and this has been going on till now.... Never exceeding 3.4 kgs.....
<br />
<br />I started her on Caprilon Formula (for fat malabsorption) 3 weeks ago (along with breast milk).... She seems to have more meat, but doesnt weigh any more....
<br />Yesterday i noticed her calves and feet have begun swelling again (they had treated it at the hospital overseas, but i dont know how)
<br />Please advice

 

[arche4life]

Dear Mummy,

I am a 23 year old college student living in California, United States. I wanted to let you know that I e-mailed a few of my doctors and other CF contacts about your situation in the hopes that they may provide me some information that might be useful to you, they may even know some people who may be able to help.

Also I wanted to ask (and please don't be offended) if you would be at all interested in some assistance with other types of expenses. I would love to know more about your story and your family and would really love to help.

I myself have cystic fibrosis and understand the hardships of the disease. I am fortunate to be provided with good medical care so I can't even imagine how you must struggle. You truely are an angel walking among us. I am enclosing my e-mail address. If at all possible, if you get the chance, please e-mail me a bit more about yourself. All of my love,
-Annie

opatza@sonoma.edu

 

[arche4life]

Dear Mummy,

I am a 23 year old college student living in California, United States. I wanted to let you know that I e-mailed a few of my doctors and other CF contacts about your situation in the hopes that they may provide me some information that might be useful to you, they may even know some people who may be able to help.

Also I wanted to ask (and please don't be offended) if you would be at all interested in some assistance with other types of expenses. I would love to know more about your story and your family and would really love to help.

I myself have cystic fibrosis and understand the hardships of the disease. I am fortunate to be provided with good medical care so I can't even imagine how you must struggle. You truely are an angel walking among us. I am enclosing my e-mail address. If at all possible, if you get the chance, please e-mail me a bit more about yourself. All of my love,
-Annie

opatza@sonoma.edu

 

[arche4life]

Dear Mummy,

I am a 23 year old college student living in California, United States. I wanted to let you know that I e-mailed a few of my doctors and other CF contacts about your situation in the hopes that they may provide me some information that might be useful to you, they may even know some people who may be able to help.

Also I wanted to ask (and please don't be offended) if you would be at all interested in some assistance with other types of expenses. I would love to know more about your story and your family and would really love to help.

I myself have cystic fibrosis and understand the hardships of the disease. I am fortunate to be provided with good medical care so I can't even imagine how you must struggle. You truely are an angel walking among us. I am enclosing my e-mail address. If at all possible, if you get the chance, please e-mail me a bit more about yourself. All of my love,
-Annie

opatza@sonoma.edu

 

[arche4life]

Dear Mummy,

I am a 23 year old college student living in California, United States. I wanted to let you know that I e-mailed a few of my doctors and other CF contacts about your situation in the hopes that they may provide me some information that might be useful to you, they may even know some people who may be able to help.

Also I wanted to ask (and please don't be offended) if you would be at all interested in some assistance with other types of expenses. I would love to know more about your story and your family and would really love to help.

I myself have cystic fibrosis and understand the hardships of the disease. I am fortunate to be provided with good medical care so I can't even imagine how you must struggle. You truely are an angel walking among us. I am enclosing my e-mail address. If at all possible, if you get the chance, please e-mail me a bit more about yourself. All of my love,
-Annie

opatza@sonoma.edu

 

[arche4life]

Dear Mummy,
<br />
<br />I am a 23 year old college student living in California, United States. I wanted to let you know that I e-mailed a few of my doctors and other CF contacts about your situation in the hopes that they may provide me some information that might be useful to you, they may even know some people who may be able to help.
<br />
<br />Also I wanted to ask (and please don't be offended) if you would be at all interested in some assistance with other types of expenses. I would love to know more about your story and your family and would really love to help.
<br />
<br />I myself have cystic fibrosis and understand the hardships of the disease. I am fortunate to be provided with good medical care so I can't even imagine how you must struggle. You truely are an angel walking among us. I am enclosing my e-mail address. If at all possible, if you get the chance, please e-mail me a bit more about yourself. All of my love,
<br />-Annie
<br />
<br />opatza@sonoma.edu

 

[mousesmom]

HI There, I'm so sorry to hear that you are having such a tough time, I know that it can be quite a worry.

It is very important that your daughter is under the regular care of a CF specialist. If It is not possible for you to move, can your Dr not keep in contact with a CF specialist regarding her care? All the main pubilc hospitals in South Africa have CF specialist, & there are also private specialists.

My daugter is also on Creon 25000. If your daughter is still not gaining weight she may need a higher dose of Creon or she may have an untreated lung infection.

 

[mousesmom]

HI There, I'm so sorry to hear that you are having such a tough time, I know that it can be quite a worry.

It is very important that your daughter is under the regular care of a CF specialist. If It is not possible for you to move, can your Dr not keep in contact with a CF specialist regarding her care? All the main pubilc hospitals in South Africa have CF specialist, & there are also private specialists.

My daugter is also on Creon 25000. If your daughter is still not gaining weight she may need a higher dose of Creon or she may have an untreated lung infection.

 

[mousesmom]

HI There, I'm so sorry to hear that you are having such a tough time, I know that it can be quite a worry.

It is very important that your daughter is under the regular care of a CF specialist. If It is not possible for you to move, can your Dr not keep in contact with a CF specialist regarding her care? All the main pubilc hospitals in South Africa have CF specialist, & there are also private specialists.

My daugter is also on Creon 25000. If your daughter is still not gaining weight she may need a higher dose of Creon or she may have an untreated lung infection.

 

[mousesmom]

HI There, I'm so sorry to hear that you are having such a tough time, I know that it can be quite a worry.

It is very important that your daughter is under the regular care of a CF specialist. If It is not possible for you to move, can your Dr not keep in contact with a CF specialist regarding her care? All the main pubilc hospitals in South Africa have CF specialist, & there are also private specialists.

My daugter is also on Creon 25000. If your daughter is still not gaining weight she may need a higher dose of Creon or she may have an untreated lung infection.

 

[mousesmom]

HI There, I'm so sorry to hear that you are having such a tough time, I know that it can be quite a worry.
<br />
<br />It is very important that your daughter is under the regular care of a CF specialist. If It is not possible for you to move, can your Dr not keep in contact with a CF specialist regarding her care? All the main pubilc hospitals in South Africa have CF specialist, & there are also private specialists.
<br />
<br />My daugter is also on Creon 25000. If your daughter is still not gaining weight she may need a higher dose of Creon or she may have an untreated lung infection.

 

[JORDYSMOM]

Welcome to the site. It sounds like both of the previous posters have helpful information for you. I hope they can help you get in contact with a specialist, because I feel it's imperative that you find one.

You'll be in my thoughts & prayers. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome to the site. It sounds like both of the previous posters have helpful information for you. I hope they can help you get in contact with a specialist, because I feel it's imperative that you find one.

You'll be in my thoughts & prayers. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome to the site. It sounds like both of the previous posters have helpful information for you. I hope they can help you get in contact with a specialist, because I feel it's imperative that you find one.

You'll be in my thoughts & prayers. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome to the site. It sounds like both of the previous posters have helpful information for you. I hope they can help you get in contact with a specialist, because I feel it's imperative that you find one.

You'll be in my thoughts & prayers. Keep us posted.

Stacey

 

[JORDYSMOM]

Welcome to the site. It sounds like both of the previous posters have helpful information for you. I hope they can help you get in contact with a specialist, because I feel it's imperative that you find one.
<br />
<br />You'll be in my thoughts & prayers. Keep us posted.
<br />
<br />Stacey