My niece was diagnosed last year

[WorriedAunt]

with CF. This was within 2 weeks after she was born September 11th. She has been in the hospital in the Netherlands most of 2010  after she was born, then everything was okay for a few months but she had to go back to the hospital for a few days last week, went home for a few days and is yet back in the hospital again.<div><br></div><div>This is not my own child, I don't have any children but it's my brother's only daughter. I live in the USA so I can't be there either and also don't know exactly which medicine she is on right now. I do know that they have had her on antibiotics for almost the entire year now. She is yet again on another long antibiotics string until the end of August, yet it's giving her diarrhea hence why she is back in the hospital. </div><div><br></div><div>My personal concern is that they are giving her too many antibiotics and when she will grow older her body will be immune to it. Do any of you have the same experiences or any tips I could give my brother and his wife since they don't speak English very well.</div><div><br></div><div>Thank you! Petra</div>

 

[WorriedAunt]

with CF. This was within 2 weeks after she was born September 11th. She has been in the hospital in the Netherlands most of 2010 after she was born, then everything was okay for a few months but she had to go back to the hospital for a few days last week, went home for a few days and is yet back in the hospital again.<br>This is not my own child, I don't have any children but it's my brother's only daughter. I live in the USA so I can't be there either and also don't know exactly which medicine she is on right now. I do know that they have had her on antibiotics for almost the entire year now. She is yet again on another long antibiotics string until the end of August, yet it's giving her diarrhea hence why she is back in the hospital.<br>My personal concern is that they are giving her too many antibiotics and when she will grow older her body will be immune to it. Do any of you have the same experiences or any tips I could give my brother and his wife since they don't speak English very well.<br>Thank you! Petra

 

[WorriedAunt]

with CF. This was within 2 weeks after she was born September 11th. She has been in the hospital in the Netherlands most of 2010 after she was born, then everything was okay for a few months but she had to go back to the hospital for a few days last week, went home for a few days and is yet back in the hospital again.<br>This is not my own child, I don't have any children but it's my brother's only daughter. I live in the USA so I can't be there either and also don't know exactly which medicine she is on right now. I do know that they have had her on antibiotics for almost the entire year now. She is yet again on another long antibiotics string until the end of August, yet it's giving her diarrhea hence why she is back in the hospital.<br>My personal concern is that they are giving her too many antibiotics and when she will grow older her body will be immune to it. Do any of you have the same experiences or any tips I could give my brother and his wife since they don't speak English very well.<br>Thank you! Petra

 

[just1more]

Firstly, the heavy antibiotic use is not 'abnormal', nor it is anything to worry about. While there is a risk of developing resistance, this is just part of CF. The Netherlands have pretty good medical care, you can probably feel comfortable they are watching the amount the use.

As for your brother & his wife, we have a couple of members in the Netherlands, I'll reach out to them today and see if I can put one in touch with you. They might then be able to help in Dutch.

Lastly, feel free to stick around here and ask questions. We have a lot of great people, both patients and families and it can be a great resource.

 

[just1more]

Firstly, the heavy antibiotic use is not 'abnormal', nor it is anything to worry about. While there is a risk of developing resistance, this is just part of CF. The Netherlands have pretty good medical care, you can probably feel comfortable they are watching the amount the use.

As for your brother & his wife, we have a couple of members in the Netherlands, I'll reach out to them today and see if I can put one in touch with you. They might then be able to help in Dutch.

Lastly, feel free to stick around here and ask questions. We have a lot of great people, both patients and families and it can be a great resource.

 

[just1more]

Firstly, the heavy antibiotic use is not 'abnormal', nor it is anything to worry about. While there is a risk of developing resistance, this is just part of CF. The Netherlands have pretty good medical care, you can probably feel comfortable they are watching the amount the use.
<br />
<br />As for your brother & his wife, we have a couple of members in the Netherlands, I'll reach out to them today and see if I can put one in touch with you. They might then be able to help in Dutch.
<br />
<br />Lastly, feel free to stick around here and ask questions. We have a lot of great people, both patients and families and it can be a great resource.

 

[Marjolein]

Hi Petra,
I hope the rest of the forum doesn't mind when I go on in Dutch. My English is pretty perfect if I may say so myself ;-) But maybe your brother and his wife will read this as well.

Zoals jij vast weet en Tom ook heeft gezegd, is de zorg hier heel goed geregeld. Ik weet niet naar wel ziekenhuis jouw nichtje gaat maar ik neem aan dat dat een CF centrum is? Daar weten ze vast wel wat ze doen.
CFers krijgen vaak een onderhoudsdosering antibioticum, soms ook zeer jonge kinderen, als zij het nodig hebben. Soms blijkt dat zij van de ene kuur naar de andere moeten en dan is zo'n onderhoudskuur vaak heel goed en normaal om te geven.

Ik kan haar ouders denk ik het beste verwijzen naar cfcafe.nl Daar is een forum waar op het moment redelijk veel ouders schrijven. Daar zullen ze vast veel aan hebben.

Heb je nog vragen, schroom niet om ze te stellen!

And Tom, thank you for your PM!

 

[Marjolein]

Hi Petra,
I hope the rest of the forum doesn't mind when I go on in Dutch. My English is pretty perfect if I may say so myself ;-) But maybe your brother and his wife will read this as well.

Zoals jij vast weet en Tom ook heeft gezegd, is de zorg hier heel goed geregeld. Ik weet niet naar wel ziekenhuis jouw nichtje gaat maar ik neem aan dat dat een CF centrum is? Daar weten ze vast wel wat ze doen.
CFers krijgen vaak een onderhoudsdosering antibioticum, soms ook zeer jonge kinderen, als zij het nodig hebben. Soms blijkt dat zij van de ene kuur naar de andere moeten en dan is zo'n onderhoudskuur vaak heel goed en normaal om te geven.

Ik kan haar ouders denk ik het beste verwijzen naar cfcafe.nl Daar is een forum waar op het moment redelijk veel ouders schrijven. Daar zullen ze vast veel aan hebben.

Heb je nog vragen, schroom niet om ze te stellen!

And Tom, thank you for your PM!

 

[Marjolein]

Hi Petra,
<br />I hope the rest of the forum doesn't mind when I go on in Dutch. My English is pretty perfect if I may say so myself ;-) But maybe your brother and his wife will read this as well.
<br />
<br />Zoals jij vast weet en Tom ook heeft gezegd, is de zorg hier heel goed geregeld. Ik weet niet naar wel ziekenhuis jouw nichtje gaat maar ik neem aan dat dat een CF centrum is? Daar weten ze vast wel wat ze doen.
<br />CFers krijgen vaak een onderhoudsdosering antibioticum, soms ook zeer jonge kinderen, als zij het nodig hebben. Soms blijkt dat zij van de ene kuur naar de andere moeten en dan is zo'n onderhoudskuur vaak heel goed en normaal om te geven.
<br />
<br />Ik kan haar ouders denk ik het beste verwijzen naar cfcafe.nl Daar is een forum waar op het moment redelijk veel ouders schrijven. Daar zullen ze vast veel aan hebben.
<br />
<br />Heb je nog vragen, schroom niet om ze te stellen!
<br />
<br />And Tom, thank you for your PM!

 

[WorriedAunt]

Thanks Tom and Marjolein for your replies! Marjolein, I know my sister in law is on a Dutch CF-forum so I'm sure it's the one you linked to. And even though I know healthcare in the Netherlands is outstanding, I know sometimes they treat this in a different way in different countries so I was hoping to hear if there were alternatives as well. My niece is going to the CF-center in Groningen, but my brother feels they are not being taken seriously nor listened to over there. Sometimes when they call about something regarding e.g. her diet etc. they won't get a call back and they have to keep calling them before they finally get a reply. Now we all know they are busy and my niece is not the only child with CF of course but they really feel they are just putting her on antibiotics because they don't know what else to do. At least this is how they feel.
But hearing that it is fairly normal to have a child on antibiotics for a longer period of time is good; I can at least pass that on to them <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks again!! Petra

 

[WorriedAunt]

Thanks Tom and Marjolein for your replies! Marjolein, I know my sister in law is on a Dutch CF-forum so I'm sure it's the one you linked to. And even though I know healthcare in the Netherlands is outstanding, I know sometimes they treat this in a different way in different countries so I was hoping to hear if there were alternatives as well. My niece is going to the CF-center in Groningen, but my brother feels they are not being taken seriously nor listened to over there. Sometimes when they call about something regarding e.g. her diet etc. they won't get a call back and they have to keep calling them before they finally get a reply. Now we all know they are busy and my niece is not the only child with CF of course but they really feel they are just putting her on antibiotics because they don't know what else to do. At least this is how they feel.
But hearing that it is fairly normal to have a child on antibiotics for a longer period of time is good; I can at least pass that on to them <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks again!! Petra

 

[WorriedAunt]

Thanks Tom and Marjolein for your replies! Marjolein, I know my sister in law is on a Dutch CF-forum so I'm sure it's the one you linked to. And even though I know healthcare in the Netherlands is outstanding, I know sometimes they treat this in a different way in different countries so I was hoping to hear if there were alternatives as well. My niece is going to the CF-center in Groningen, but my brother feels they are not being taken seriously nor listened to over there. Sometimes when they call about something regarding e.g. her diet etc. they won't get a call back and they have to keep calling them before they finally get a reply. Now we all know they are busy and my niece is not the only child with CF of course but they really feel they are just putting her on antibiotics because they don't know what else to do. At least this is how they feel.
<br />But hearing that it is fairly normal to have a child on antibiotics for a longer period of time is good; I can at least pass that on to them <img src="i/expressions/face-icon-small-smile.gif" border="0"> Thanks again!! Petra

 

[Marjolein]

I think those are things that can happen in every center, but it sure is not nice when it happens.

I went to de VU as a child and AMC as adult. I had a double lungtransplant in Groningen in 2006 so that is my center now. Though I don't deal with CF docs anymore really. As my biggest problem has always been my lungs. The transplant team has a dietician and such. I do see an ENT who sees more CFers. But of course, I don't see the docs a child will see.

I do think, that your brother should voice his concern to the team. Just to hear what they say, I am sure they will be open to answer him.
CFCafé has a few parents I think from kids who go to Groningen. I'm not sure if I 'know' your sister in law from there.

Mijn blog, mocht je interesse hebben
marjolein84.web-log.nl

Marjolein

 

[Marjolein]

I think those are things that can happen in every center, but it sure is not nice when it happens.

I went to de VU as a child and AMC as adult. I had a double lungtransplant in Groningen in 2006 so that is my center now. Though I don't deal with CF docs anymore really. As my biggest problem has always been my lungs. The transplant team has a dietician and such. I do see an ENT who sees more CFers. But of course, I don't see the docs a child will see.

I do think, that your brother should voice his concern to the team. Just to hear what they say, I am sure they will be open to answer him.
CFCafé has a few parents I think from kids who go to Groningen. I'm not sure if I 'know' your sister in law from there.

Mijn blog, mocht je interesse hebben
marjolein84.web-log.nl

Marjolein

 

[Marjolein]

I think those are things that can happen in every center, but it sure is not nice when it happens.
<br />
<br />I went to de VU as a child and AMC as adult. I had a double lungtransplant in Groningen in 2006 so that is my center now. Though I don't deal with CF docs anymore really. As my biggest problem has always been my lungs. The transplant team has a dietician and such. I do see an ENT who sees more CFers. But of course, I don't see the docs a child will see.
<br />
<br />I do think, that your brother should voice his concern to the team. Just to hear what they say, I am sure they will be open to answer him.
<br />CFCafé has a few parents I think from kids who go to Groningen. I'm not sure if I 'know' your sister in law from there.
<br />
<br />Mijn blog, mocht je interesse hebben
<br />marjolein84.web-log.nl
<br />
<br />Marjolein

 

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?

 

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?

 

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
<br />That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?

 

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?

 

[WorriedAunt]

Thanks so much Marjolein! I will ask my brother if that is the forum they go to as well. I know his wife is on there a lot, her first name is Danielle and my niece is Chloë so you may know them. I will definitely check out your blog; thanks so much for the link.
That's amazing you had a double lung transplant!! Are you feeling better now or is CF something you still deal with even though you have 'new' lungs?