immunodeficiency in a cystic fibrosis child

[silverlady]

i was wondering if there are any people on this forum that has cf and have a treatment called flebogamma treatment i have yet to find somebody else that has to have this done . christopher is six years old , he has cf and he is immunodeficient , he has a low immune system , he has this treatment every three weeks , he has a portacath and the infusionj is done through this , the infusion consists of white blood cells and plasma to help increase his immune system . I live in the united kingdom , no other cfer has this treament so i am interested to find out if it is done elsewhere.thankyou

 

[silverlady]

i was wondering if there are any people on this forum that has cf and have a treatment called flebogamma treatment i have yet to find somebody else that has to have this done . christopher is six years old , he has cf and he is immunodeficient , he has a low immune system , he has this treatment every three weeks , he has a portacath and the infusionj is done through this , the infusion consists of white blood cells and plasma to help increase his immune system . I live in the united kingdom , no other cfer has this treament so i am interested to find out if it is done elsewhere.thankyou

 

[silverlady]

i was wondering if there are any people on this forum that has cf and have a treatment called flebogamma treatment i have yet to find somebody else that has to have this done . christopher is six years old , he has cf and he is immunodeficient , he has a low immune system , he has this treatment every three weeks , he has a portacath and the infusionj is done through this , the infusion consists of white blood cells and plasma to help increase his immune system . I live in the united kingdom , no other cfer has this treament so i am interested to find out if it is done elsewhere.thankyou

 

[silverlady]

i was wondering if there are any people on this forum that has cf and have a treatment called flebogamma treatment i have yet to find somebody else that has to have this done . christopher is six years old , he has cf and he is immunodeficient , he has a low immune system , he has this treatment every three weeks , he has a portacath and the infusionj is done through this , the infusion consists of white blood cells and plasma to help increase his immune system . I live in the united kingdom , no other cfer has this treament so i am interested to find out if it is done elsewhere.thankyou

 

[silverlady]

i was wondering if there are any people on this forum that has cf and have a treatment called flebogamma treatment i have yet to find somebody else that has to have this done . christopher is six years old , he has cf and he is immunodeficient , he has a low immune system , he has this treatment every three weeks , he has a portacath and the infusionj is done through this , the infusion consists of white blood cells and plasma to help increase his immune system . I live in the united kingdom , no other cfer has this treament so i am interested to find out if it is done elsewhere.thankyou

 

[lilywing]

Wow, I thought I was the only one!
I did a quick search, and I understand that flebogamma is a brand or version (please correct me if I am wrong)of immunoglobulin, or IVIG. I have been getting IVIG infusions for 2 days every 2 weeks since September 2005. In addition to cystic fibrosis, I have ITP (idiopathic thrombocytopenia purpura), a platelet disorder. It is an autoimmune disease, therefore sometimes treated with IVIG. SO, I don't get the IVIG for CF, but to stop my body destroying my platelets. I do think that I benefit (CF-wise) from all those extra antibodies!

How long does flebogamma take to infuse?
I live in Canada, by the way.

 

[lilywing]

Wow, I thought I was the only one!
I did a quick search, and I understand that flebogamma is a brand or version (please correct me if I am wrong)of immunoglobulin, or IVIG. I have been getting IVIG infusions for 2 days every 2 weeks since September 2005. In addition to cystic fibrosis, I have ITP (idiopathic thrombocytopenia purpura), a platelet disorder. It is an autoimmune disease, therefore sometimes treated with IVIG. SO, I don't get the IVIG for CF, but to stop my body destroying my platelets. I do think that I benefit (CF-wise) from all those extra antibodies!

How long does flebogamma take to infuse?
I live in Canada, by the way.

 

[lilywing]

Wow, I thought I was the only one!
I did a quick search, and I understand that flebogamma is a brand or version (please correct me if I am wrong)of immunoglobulin, or IVIG. I have been getting IVIG infusions for 2 days every 2 weeks since September 2005. In addition to cystic fibrosis, I have ITP (idiopathic thrombocytopenia purpura), a platelet disorder. It is an autoimmune disease, therefore sometimes treated with IVIG. SO, I don't get the IVIG for CF, but to stop my body destroying my platelets. I do think that I benefit (CF-wise) from all those extra antibodies!

How long does flebogamma take to infuse?
I live in Canada, by the way.

 

[lilywing]

Wow, I thought I was the only one!
I did a quick search, and I understand that flebogamma is a brand or version (please correct me if I am wrong)of immunoglobulin, or IVIG. I have been getting IVIG infusions for 2 days every 2 weeks since September 2005. In addition to cystic fibrosis, I have ITP (idiopathic thrombocytopenia purpura), a platelet disorder. It is an autoimmune disease, therefore sometimes treated with IVIG. SO, I don't get the IVIG for CF, but to stop my body destroying my platelets. I do think that I benefit (CF-wise) from all those extra antibodies!

How long does flebogamma take to infuse?
I live in Canada, by the way.

 

[lilywing]

Wow, I thought I was the only one!
<br />I did a quick search, and I understand that flebogamma is a brand or version (please correct me if I am wrong)of immunoglobulin, or IVIG. I have been getting IVIG infusions for 2 days every 2 weeks since September 2005. In addition to cystic fibrosis, I have ITP (idiopathic thrombocytopenia purpura), a platelet disorder. It is an autoimmune disease, therefore sometimes treated with IVIG. SO, I don't get the IVIG for CF, but to stop my body destroying my platelets. I do think that I benefit (CF-wise) from all those extra antibodies!
<br />
<br />How long does flebogamma take to infuse?
<br />I live in Canada, by the way.

 

[silverlady]

cannot believe somebody else gets the sane treatment i always thought christopher was because no other cfer in this country is on it , christopher has been on it five years and it really helps before he started to have this treatment he was in and out of hospital loads he got everything going and he was really poorly with it , christophers specialist moved over to canada to further his research in to cf , brilliant doctor it was a shame to lose him, it takes six hours for christophers to go through but he is very light in the weight department .I have no idea whether there is a name for christophers immune deficiency his white cells are very low and he cannot fight infections very well

 

[silverlady]

cannot believe somebody else gets the sane treatment i always thought christopher was because no other cfer in this country is on it , christopher has been on it five years and it really helps before he started to have this treatment he was in and out of hospital loads he got everything going and he was really poorly with it , christophers specialist moved over to canada to further his research in to cf , brilliant doctor it was a shame to lose him, it takes six hours for christophers to go through but he is very light in the weight department .I have no idea whether there is a name for christophers immune deficiency his white cells are very low and he cannot fight infections very well

 

[silverlady]

cannot believe somebody else gets the sane treatment i always thought christopher was because no other cfer in this country is on it , christopher has been on it five years and it really helps before he started to have this treatment he was in and out of hospital loads he got everything going and he was really poorly with it , christophers specialist moved over to canada to further his research in to cf , brilliant doctor it was a shame to lose him, it takes six hours for christophers to go through but he is very light in the weight department .I have no idea whether there is a name for christophers immune deficiency his white cells are very low and he cannot fight infections very well

 

[silverlady]

cannot believe somebody else gets the sane treatment i always thought christopher was because no other cfer in this country is on it , christopher has been on it five years and it really helps before he started to have this treatment he was in and out of hospital loads he got everything going and he was really poorly with it , christophers specialist moved over to canada to further his research in to cf , brilliant doctor it was a shame to lose him, it takes six hours for christophers to go through but he is very light in the weight department .I have no idea whether there is a name for christophers immune deficiency his white cells are very low and he cannot fight infections very well

 

[silverlady]

cannot believe somebody else gets the sane treatment i always thought christopher was because no other cfer in this country is on it , christopher has been on it five years and it really helps before he started to have this treatment he was in and out of hospital loads he got everything going and he was really poorly with it , christophers specialist moved over to canada to further his research in to cf , brilliant doctor it was a shame to lose him, it takes six hours for christophers to go through but he is very light in the weight department .I have no idea whether there is a name for christophers immune deficiency his white cells are very low and he cannot fight infections very well