CF center

[rubiesmom]

Hello everyone. We finally have Rubies first appointment at the CF center where we live. I'm still very scared about this whole CF thing but I'm happy that our little one will finally be on the road to better health. I was wondering if anyone could tell me what to expect on our first visit? Rubie has 2 copies of the delta f508 gene, what does this mean. I hope I'm not asking too much, I would love to hear from you all. Thank you so much


mom to Rubie 6 (w/cf)

 

[rubiesmom]

Hello everyone. We finally have Rubies first appointment at the CF center where we live. I'm still very scared about this whole CF thing but I'm happy that our little one will finally be on the road to better health. I was wondering if anyone could tell me what to expect on our first visit? Rubie has 2 copies of the delta f508 gene, what does this mean. I hope I'm not asking too much, I would love to hear from you all. Thank you so much


mom to Rubie 6 (w/cf)

 

[rubiesmom]

Hello everyone. We finally have Rubies first appointment at the CF center where we live. I'm still very scared about this whole CF thing but I'm happy that our little one will finally be on the road to better health. I was wondering if anyone could tell me what to expect on our first visit? Rubie has 2 copies of the delta f508 gene, what does this mean. I hope I'm not asking too much, I would love to hear from you all. Thank you so much


mom to Rubie 6 (w/cf)

 

[Ratatosk]

DS has that mutation. He has more digestive issues -- is pancreatic insuffcient, so needs enzymes to digest his food. I believe it's one of the most common mutations in the states...

I'd suggest you take a notebook along to write down any questions you may have and to take notes. I always bring along a list of his meds, too. I keep the list in my computer and just added a question for DS's appointment next month -- he turns 4 and am wondering if we'll switch to tablet vitamins and am wondering about the Aqua-Adeks, since he's on regular adeks.

Our first visit the nurse took DS's vitals, weighed him. We met with a pulmonologist, dietician, gastro doctor, regular pediatrician, social worker, a respiratory therapist -- who also did a throat culture to see if DS was growing anything, and we met with a pediatric pharmacist to go over all the meds DS was on. He also had blood tests to check vitamin levels, liver levels, blood counts.. And he had a chest Xray.

We took along a backpack with juice, snacks, food, toys, books, purell -- as he got older we added a portable DVD player, puzzles, games... Nowdays we go to the regular clinic 'cuz we had issues with the 4 1/2 hour appointments and the community waiting room.

 

[Ratatosk]

DS has that mutation. He has more digestive issues -- is pancreatic insuffcient, so needs enzymes to digest his food. I believe it's one of the most common mutations in the states...

I'd suggest you take a notebook along to write down any questions you may have and to take notes. I always bring along a list of his meds, too. I keep the list in my computer and just added a question for DS's appointment next month -- he turns 4 and am wondering if we'll switch to tablet vitamins and am wondering about the Aqua-Adeks, since he's on regular adeks.

Our first visit the nurse took DS's vitals, weighed him. We met with a pulmonologist, dietician, gastro doctor, regular pediatrician, social worker, a respiratory therapist -- who also did a throat culture to see if DS was growing anything, and we met with a pediatric pharmacist to go over all the meds DS was on. He also had blood tests to check vitamin levels, liver levels, blood counts.. And he had a chest Xray.

We took along a backpack with juice, snacks, food, toys, books, purell -- as he got older we added a portable DVD player, puzzles, games... Nowdays we go to the regular clinic 'cuz we had issues with the 4 1/2 hour appointments and the community waiting room.

 

[Ratatosk]

DS has that mutation. He has more digestive issues -- is pancreatic insuffcient, so needs enzymes to digest his food. I believe it's one of the most common mutations in the states...

I'd suggest you take a notebook along to write down any questions you may have and to take notes. I always bring along a list of his meds, too. I keep the list in my computer and just added a question for DS's appointment next month -- he turns 4 and am wondering if we'll switch to tablet vitamins and am wondering about the Aqua-Adeks, since he's on regular adeks.

Our first visit the nurse took DS's vitals, weighed him. We met with a pulmonologist, dietician, gastro doctor, regular pediatrician, social worker, a respiratory therapist -- who also did a throat culture to see if DS was growing anything, and we met with a pediatric pharmacist to go over all the meds DS was on. He also had blood tests to check vitamin levels, liver levels, blood counts.. And he had a chest Xray.

We took along a backpack with juice, snacks, food, toys, books, purell -- as he got older we added a portable DVD player, puzzles, games... Nowdays we go to the regular clinic 'cuz we had issues with the 4 1/2 hour appointments and the community waiting room.

 

[Ratatosk]

Oh, they may also have the dietician go over what she eat for regular meals if weight is an issue. Our CF clinic usually sends us a form asking us to describe what DS eats for breakfast, lunch, dinner, snacks and the figure out how many calories he's getting. How he's tracking for height and weight and to see if we need to add or change anything.

 

[Ratatosk]

Oh, they may also have the dietician go over what she eat for regular meals if weight is an issue. Our CF clinic usually sends us a form asking us to describe what DS eats for breakfast, lunch, dinner, snacks and the figure out how many calories he's getting. How he's tracking for height and weight and to see if we need to add or change anything.

 

[Ratatosk]

Oh, they may also have the dietician go over what she eat for regular meals if weight is an issue. Our CF clinic usually sends us a form asking us to describe what DS eats for breakfast, lunch, dinner, snacks and the figure out how many calories he's getting. How he's tracking for height and weight and to see if we need to add or change anything.

 

[folione]

Are you in the U.S.? My son's first visit to a CF clinic was in 2003 in the U.S. and here's some info:
1. It took 2 or 3 hours start to finish because we saw 2 doctors, a nutritionist, a nurse, and a social worker and they all had quite a bit to say. Make sure your child has something to keep busy with so she's not bored silly.
2. The medical stuff included height, weight, blood pressure, temp., a thing on my son's finger to check blood oxygen levels, ear/nose/throat exam, listening to lungs and taking a throat culture. They also asked us a ton of questions about his eating, toileting, health history. I do not recall there being blood taken, but I'm not sure.
3. We got lots of instructions on the medicines and treatments that we were being told to start (enzymes, acid-blockers, chest PT, nebulized albuterol and pulmicort, different baby formula). We also took home a pile of samples and a stack of prescriptions to be filled.
4. We left feeling a bit overwhelmed and sad because it was quite a load of stuff for new first-time parents.
5. Take a notebook and pen so you can write down all the stuff you'll be told.
6. If you have time, write down a bit of health history or at least recent stuff, so it will be easier to remember when you're being asked.

Good luck.

 

[folione]

Are you in the U.S.? My son's first visit to a CF clinic was in 2003 in the U.S. and here's some info:
1. It took 2 or 3 hours start to finish because we saw 2 doctors, a nutritionist, a nurse, and a social worker and they all had quite a bit to say. Make sure your child has something to keep busy with so she's not bored silly.
2. The medical stuff included height, weight, blood pressure, temp., a thing on my son's finger to check blood oxygen levels, ear/nose/throat exam, listening to lungs and taking a throat culture. They also asked us a ton of questions about his eating, toileting, health history. I do not recall there being blood taken, but I'm not sure.
3. We got lots of instructions on the medicines and treatments that we were being told to start (enzymes, acid-blockers, chest PT, nebulized albuterol and pulmicort, different baby formula). We also took home a pile of samples and a stack of prescriptions to be filled.
4. We left feeling a bit overwhelmed and sad because it was quite a load of stuff for new first-time parents.
5. Take a notebook and pen so you can write down all the stuff you'll be told.
6. If you have time, write down a bit of health history or at least recent stuff, so it will be easier to remember when you're being asked.

Good luck.

 

[folione]

Are you in the U.S.? My son's first visit to a CF clinic was in 2003 in the U.S. and here's some info:
1. It took 2 or 3 hours start to finish because we saw 2 doctors, a nutritionist, a nurse, and a social worker and they all had quite a bit to say. Make sure your child has something to keep busy with so she's not bored silly.
2. The medical stuff included height, weight, blood pressure, temp., a thing on my son's finger to check blood oxygen levels, ear/nose/throat exam, listening to lungs and taking a throat culture. They also asked us a ton of questions about his eating, toileting, health history. I do not recall there being blood taken, but I'm not sure.
3. We got lots of instructions on the medicines and treatments that we were being told to start (enzymes, acid-blockers, chest PT, nebulized albuterol and pulmicort, different baby formula). We also took home a pile of samples and a stack of prescriptions to be filled.
4. We left feeling a bit overwhelmed and sad because it was quite a load of stuff for new first-time parents.
5. Take a notebook and pen so you can write down all the stuff you'll be told.
6. If you have time, write down a bit of health history or at least recent stuff, so it will be easier to remember when you're being asked.

Good luck.

 

[izemmom]

Hi Rubiesmom

I'm glad you are finally getting that appointment! You are not alone in feeling
scared about this cf stuff. We all do. You will feel better after the appointment
and once you have met your team. I hope they are as good as out cf team!

As for what to expect...Emily was just 4 days old when we had our first "visit" with
the team. they came to us in the hospital. So, things will of course be different.
But, I think you can probably expect Rubie to get a chest x-ray, possibly an abdominal x-ray, a sputum culture (just like a throat culture that they wuld do to check for strep), she'll be weighed and measured. I hope they'll have you meet with the dietician. If RUbie has weight gain issues at all, this person can be your best resource. (He or she will also probably be a good source for some freebies - enzymes, vitamins, ensure drink...). You should meet with the pulmonlogist who will probably go over the x-rays with you and will probably ask lots of questions. You might meet with a respitory therapist, especially if you haven't started doing chest pt yet. They'll show you how it works. And, if I were you, I'd ask if the team has a genetics counselor, a child life specialist, a social worker and a nurse practicioner. You may not need the services of these people right now, but you will eventually. Its good to meet them from the get go.

I'll let someone else speak to the double delta F508 traits. We have one copy, but there are so many here that are double...they're the experts.

Before your appointment, try to make a list of your questions...even the ones that seem silly. You will be overwhelmend with info, and it will really help to have your thoghts collects in one place.

Most of all, love that little girl of yours. This is a very scary time for her, too. Remember that we are here to help, and please let us know how it goes.

 

[izemmom]

Hi Rubiesmom

I'm glad you are finally getting that appointment! You are not alone in feeling
scared about this cf stuff. We all do. You will feel better after the appointment
and once you have met your team. I hope they are as good as out cf team!

As for what to expect...Emily was just 4 days old when we had our first "visit" with
the team. they came to us in the hospital. So, things will of course be different.
But, I think you can probably expect Rubie to get a chest x-ray, possibly an abdominal x-ray, a sputum culture (just like a throat culture that they wuld do to check for strep), she'll be weighed and measured. I hope they'll have you meet with the dietician. If RUbie has weight gain issues at all, this person can be your best resource. (He or she will also probably be a good source for some freebies - enzymes, vitamins, ensure drink...). You should meet with the pulmonlogist who will probably go over the x-rays with you and will probably ask lots of questions. You might meet with a respitory therapist, especially if you haven't started doing chest pt yet. They'll show you how it works. And, if I were you, I'd ask if the team has a genetics counselor, a child life specialist, a social worker and a nurse practicioner. You may not need the services of these people right now, but you will eventually. Its good to meet them from the get go.

I'll let someone else speak to the double delta F508 traits. We have one copy, but there are so many here that are double...they're the experts.

Before your appointment, try to make a list of your questions...even the ones that seem silly. You will be overwhelmend with info, and it will really help to have your thoghts collects in one place.

Most of all, love that little girl of yours. This is a very scary time for her, too. Remember that we are here to help, and please let us know how it goes.

 

[izemmom]

Hi Rubiesmom

I'm glad you are finally getting that appointment! You are not alone in feeling
scared about this cf stuff. We all do. You will feel better after the appointment
and once you have met your team. I hope they are as good as out cf team!

As for what to expect...Emily was just 4 days old when we had our first "visit" with
the team. they came to us in the hospital. So, things will of course be different.
But, I think you can probably expect Rubie to get a chest x-ray, possibly an abdominal x-ray, a sputum culture (just like a throat culture that they wuld do to check for strep), she'll be weighed and measured. I hope they'll have you meet with the dietician. If RUbie has weight gain issues at all, this person can be your best resource. (He or she will also probably be a good source for some freebies - enzymes, vitamins, ensure drink...). You should meet with the pulmonlogist who will probably go over the x-rays with you and will probably ask lots of questions. You might meet with a respitory therapist, especially if you haven't started doing chest pt yet. They'll show you how it works. And, if I were you, I'd ask if the team has a genetics counselor, a child life specialist, a social worker and a nurse practicioner. You may not need the services of these people right now, but you will eventually. Its good to meet them from the get go.

I'll let someone else speak to the double delta F508 traits. We have one copy, but there are so many here that are double...they're the experts.

Before your appointment, try to make a list of your questions...even the ones that seem silly. You will be overwhelmend with info, and it will really help to have your thoghts collects in one place.

Most of all, love that little girl of yours. This is a very scary time for her, too. Remember that we are here to help, and please let us know how it goes.

 

[rubiesmom]

Thank you for all your responses and helpful hints. Her appointment is on march 7th. We live in Illinois but we'll be going to the center in Milwaukee, WI. Rubie is already on enzymes cuz her pancreas isn't functioning and she's also on ADEK multivitamin. We were told to bring her meds to the center. Sounds like it's going to be a very long day. They told me on the phone that there will be no pricks or pokes, Rubie will be happy about that.
God Bless you all and your families

Liz

 

[rubiesmom]

Thank you for all your responses and helpful hints. Her appointment is on march 7th. We live in Illinois but we'll be going to the center in Milwaukee, WI. Rubie is already on enzymes cuz her pancreas isn't functioning and she's also on ADEK multivitamin. We were told to bring her meds to the center. Sounds like it's going to be a very long day. They told me on the phone that there will be no pricks or pokes, Rubie will be happy about that.
God Bless you all and your families

Liz

 

[rubiesmom]

Thank you for all your responses and helpful hints. Her appointment is on march 7th. We live in Illinois but we'll be going to the center in Milwaukee, WI. Rubie is already on enzymes cuz her pancreas isn't functioning and she's also on ADEK multivitamin. We were told to bring her meds to the center. Sounds like it's going to be a very long day. They told me on the phone that there will be no pricks or pokes, Rubie will be happy about that.
God Bless you all and your families

Liz

 

[izemmom]

Well, I got my wish when I said i hoped your team was a wonderful as ours! that's our team!!! We go to Children's in Milwaukee! I am so excited! Please, please, please let me know if there is anything I can answer for you specifically about the hospital, the staff, etc. Judging from the phase "no pricks or pokes" I'll guess you've already talked to Mary Ellen. You're right, it will be a long day, but you are in good hands! Contact me via PM or e-mail (gtdrax@nconnect.net) if you have questions. Until then, you will be in my thoughts. Please let me know if there is ANYTHING I can do!

 

[izemmom]

Well, I got my wish when I said i hoped your team was a wonderful as ours! that's our team!!! We go to Children's in Milwaukee! I am so excited! Please, please, please let me know if there is anything I can answer for you specifically about the hospital, the staff, etc. Judging from the phase "no pricks or pokes" I'll guess you've already talked to Mary Ellen. You're right, it will be a long day, but you are in good hands! Contact me via PM or e-mail (gtdrax@nconnect.net) if you have questions. Until then, you will be in my thoughts. Please let me know if there is ANYTHING I can do!