Going to cf clinic tmrw for the first time. Questions???

[kendy]

My sons sweat test came back 60/ 62. We are going to millers childrens hospital tmrw dose anyone have suggestions on what I should ask or any test I should request. This is all overwhelming and I'm sure I'm going to be completely confused. Just by reading some of the posts here it's hard to follow

Thanks for any help!

 

[kendy]

My sons sweat test came back 60/ 62. We are going to millers childrens hospital tmrw dose anyone have suggestions on what I should ask or any test I should request. This is all overwhelming and I'm sure I'm going to be completely confused. Just by reading some of the posts here it's hard to follow

Thanks for any help!

 

[kendy]

My sons sweat test came back 60/ 62. We are going to millers childrens hospital tmrw dose anyone have suggestions on what I should ask or any test I should request. This is all overwhelming and I'm sure I'm going to be completely confused. Just by reading some of the posts here it's hard to follow
<br />
<br />Thanks for any help!

 

[AleksandraKaczynska]

I guess health questions are most important for you now. Getting to understand your sons condition and treatment: what and why to do this and that.but concentrate on what concerns your son.
CF sputum culture done is very important,
also lung x-rays - these will tell how are his lungs and what you must do get them better or to make them stay good (inhaltions and lung clearing techniques - with what and how - they should show you)
also ask about test for enzyms - if he needs them

then you can ask for a genetic test also.
And I guess it would be good to ask what to look out for esspecially - when and who you can call when you have doubts - the best is to get your docs phone number

good luck and sorry to hear about your diagnosis.

 

[AleksandraKaczynska]

I guess health questions are most important for you now. Getting to understand your sons condition and treatment: what and why to do this and that.but concentrate on what concerns your son.
CF sputum culture done is very important,
also lung x-rays - these will tell how are his lungs and what you must do get them better or to make them stay good (inhaltions and lung clearing techniques - with what and how - they should show you)
also ask about test for enzyms - if he needs them

then you can ask for a genetic test also.
And I guess it would be good to ask what to look out for esspecially - when and who you can call when you have doubts - the best is to get your docs phone number

good luck and sorry to hear about your diagnosis.

 

[AleksandraKaczynska]

I guess health questions are most important for you now. Getting to understand your sons condition and treatment: what and why to do this and that.but concentrate on what concerns your son.
<br />CF sputum culture done is very important,
<br />also lung x-rays - these will tell how are his lungs and what you must do get them better or to make them stay good (inhaltions and lung clearing techniques - with what and how - they should show you)
<br />also ask about test for enzyms - if he needs them
<br />
<br />then you can ask for a genetic test also.
<br />And I guess it would be good to ask what to look out for esspecially - when and who you can call when you have doubts - the best is to get your docs phone number
<br />
<br />good luck and sorry to hear about your diagnosis.

 

[Mommafirst]

Take it slow. Bring a notebook and just try to follow along as best you can. You won't get it all right away, it will take time.

I once equated diagnosis with being dropped in the middle of Japan with no translation dictionary and no language lessons. It really will be like learning anew language -- you'll have to learn the terms, understand the disease, and get a feel for everything before you'll be able to ask quesitons.. You can take it slowly and you'll get there. During the next few months, everytime you have a question write it in your notebook so you can ask them next time. You'll forget your questions when you are looking at the doctor if you don't have a list.

Keep coming here, there is so much to learn and we can help support you as you wrap your brain around this. ((((HUGS))))

 

[Mommafirst]

Take it slow. Bring a notebook and just try to follow along as best you can. You won't get it all right away, it will take time.

I once equated diagnosis with being dropped in the middle of Japan with no translation dictionary and no language lessons. It really will be like learning anew language -- you'll have to learn the terms, understand the disease, and get a feel for everything before you'll be able to ask quesitons.. You can take it slowly and you'll get there. During the next few months, everytime you have a question write it in your notebook so you can ask them next time. You'll forget your questions when you are looking at the doctor if you don't have a list.

Keep coming here, there is so much to learn and we can help support you as you wrap your brain around this. ((((HUGS))))

 

[Mommafirst]

Take it slow. Bring a notebook and just try to follow along as best you can. You won't get it all right away, it will take time.
<br />
<br />I once equated diagnosis with being dropped in the middle of Japan with no translation dictionary and no language lessons. It really will be like learning anew language -- you'll have to learn the terms, understand the disease, and get a feel for everything before you'll be able to ask quesitons.. You can take it slowly and you'll get there. During the next few months, everytime you have a question write it in your notebook so you can ask them next time. You'll forget your questions when you are looking at the doctor if you don't have a list.
<br />
<br />Keep coming here, there is so much to learn and we can help support you as you wrap your brain around this. ((((HUGS))))

 

[kendy]

Thank you thank you thank you!!!! It has alreay been very comforting to read the forums and see that people are doing ok with cf. My only experience with cf was a friend of mine in elementary school had it and died at age 12. That was 20 years ago and she was alway in the hospital. So it's nice to see that they have come so far with treatment.

Thank you for being the support I thought I'd never need! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kendy]

Thank you thank you thank you!!!! It has alreay been very comforting to read the forums and see that people are doing ok with cf. My only experience with cf was a friend of mine in elementary school had it and died at age 12. That was 20 years ago and she was alway in the hospital. So it's nice to see that they have come so far with treatment.

Thank you for being the support I thought I'd never need! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kendy]

Thank you thank you thank you!!!! It has alreay been very comforting to read the forums and see that people are doing ok with cf. My only experience with cf was a friend of mine in elementary school had it and died at age 12. That was 20 years ago and she was alway in the hospital. So it's nice to see that they have come so far with treatment.
<br />
<br />Thank you for being the support I thought I'd never need! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Ratatosk]

You indicated in your other post that he's had issues with pooping, sinuses -- so right down those concerns along with any others you may have.

Notebook can keep you on track in terms of questions you may have as well as medications, treatments, tests they may mention to you. These appointments can be a bit overwhelming and this way you won't say later this afternoon -- darn I should've asked about sinus rinses, digestive enzymes, nebulizers....

 

[Ratatosk]

You indicated in your other post that he's had issues with pooping, sinuses -- so right down those concerns along with any others you may have.

Notebook can keep you on track in terms of questions you may have as well as medications, treatments, tests they may mention to you. These appointments can be a bit overwhelming and this way you won't say later this afternoon -- darn I should've asked about sinus rinses, digestive enzymes, nebulizers....

 

[Ratatosk]

You indicated in your other post that he's had issues with pooping, sinuses -- so right down those concerns along with any others you may have.
<br />
<br />Notebook can keep you on track in terms of questions you may have as well as medications, treatments, tests they may mention to you. These appointments can be a bit overwhelming and this way you won't say later this afternoon -- darn I should've asked about sinus rinses, digestive enzymes, nebulizers....

 

[MaryamsMommy]

Hi, My daughter Maryam is Also seen at Millers Children, I must say your child will be in good hands. Millers is Awesome and The doctors are amazing. Expect alot of test at first. Dr Mathis And Sela Herman are the GI doctors and There is a ton of Pulmonary Docs. Our clinic is the only one in the area that you will see all the doctord in one visit. You will See GI and Pulmonary at clinic. Also RT Either Tom or Divina and our wonderful Diatician Dian and our Social worker Julia. We have a parent support group the end of every month. And Jill our Nurse is like no other.If you want to chat feel free to private message me or look me up on Facebook my name is Karen Puskas on FB. I know its alot to take in at once but the more you learn and the more you know about CF the better you will be able to help your child. Keep us posted.

Karen
Mommy to Maryam 10 with CF

 

[MaryamsMommy]

Hi, My daughter Maryam is Also seen at Millers Children, I must say your child will be in good hands. Millers is Awesome and The doctors are amazing. Expect alot of test at first. Dr Mathis And Sela Herman are the GI doctors and There is a ton of Pulmonary Docs. Our clinic is the only one in the area that you will see all the doctord in one visit. You will See GI and Pulmonary at clinic. Also RT Either Tom or Divina and our wonderful Diatician Dian and our Social worker Julia. We have a parent support group the end of every month. And Jill our Nurse is like no other.If you want to chat feel free to private message me or look me up on Facebook my name is Karen Puskas on FB. I know its alot to take in at once but the more you learn and the more you know about CF the better you will be able to help your child. Keep us posted.

Karen
Mommy to Maryam 10 with CF

 

[MaryamsMommy]

Hi, My daughter Maryam is Also seen at Millers Children, I must say your child will be in good hands. Millers is Awesome and The doctors are amazing. Expect alot of test at first. Dr Mathis And Sela Herman are the GI doctors and There is a ton of Pulmonary Docs. Our clinic is the only one in the area that you will see all the doctord in one visit. You will See GI and Pulmonary at clinic. Also RT Either Tom or Divina and our wonderful Diatician Dian and our Social worker Julia. We have a parent support group the end of every month. And Jill our Nurse is like no other.If you want to chat feel free to private message me or look me up on Facebook my name is Karen Puskas on FB. I know its alot to take in at once but the more you learn and the more you know about CF the better you will be able to help your child. Keep us posted.
<br />
<br />Karen
<br />Mommy to Maryam 10 with CF

 

[Printer]

Taking notes is a great idea but if you can bring a small tape recorder, so much the better. I would suggest that you get the Nurse Practioner's or the Nurse's e-mail address so you can follow up, easily, with the questions that you are sure to have.

Good luck.

Bill

 

[Printer]

Taking notes is a great idea but if you can bring a small tape recorder, so much the better. I would suggest that you get the Nurse Practioner's or the Nurse's e-mail address so you can follow up, easily, with the questions that you are sure to have.

Good luck.

Bill