Back from Grand Rapids and confused as ever.

C

Chilemom

New member
if you dont find coco oil you can find grate coco that has a lot of healthy calories (well as everything in life when you have to much of something is not healthy any more). Very Thai food¡¡¡... What i do i grate and apple, i put grate coco and then condensed milk, all mix in a pan and at the top merengue into the oven for 5 minutes and you have the msot amazing dessert. You can tell any of your kids to do it, is really easy...
The rice (rice itself, rice water and rice milk) i use it when my daughter has many pooh in the day ( dont know the proper word) when she has diarrhea, so be carefull to go to the other side: make him not pooh.
other thing the chestnut has a lot of calories as well. And if you can find what is really good is Quinoa, dont know if it is a legume or a cereal, but it has a lot of realy healthy properties and calories and is easy to digest, dosen´t make your belly fill heavy (like beens for example). You can prepare in sweat or salty food. I am prety sure you have in america.
In a month or so i will go to one of the top nutricionist in the world (not just in my country he is world famous) i will get a lot of tips and i will send it to you.

hugs to everyone
 
C

Chilemom

New member
if you dont find coco oil you can find grate coco that has a lot of healthy calories (well as everything in life when you have to much of something is not healthy any more). Very Thai food¡¡¡... What i do i grate and apple, i put grate coco and then condensed milk, all mix in a pan and at the top merengue into the oven for 5 minutes and you have the msot amazing dessert. You can tell any of your kids to do it, is really easy...
The rice (rice itself, rice water and rice milk) i use it when my daughter has many pooh in the day ( dont know the proper word) when she has diarrhea, so be carefull to go to the other side: make him not pooh.
other thing the chestnut has a lot of calories as well. And if you can find what is really good is Quinoa, dont know if it is a legume or a cereal, but it has a lot of realy healthy properties and calories and is easy to digest, dosen´t make your belly fill heavy (like beens for example). You can prepare in sweat or salty food. I am prety sure you have in america.
In a month or so i will go to one of the top nutricionist in the world (not just in my country he is world famous) i will get a lot of tips and i will send it to you.

hugs to everyone
 
C

Chilemom

New member
if you dont find coco oil you can find grate coco that has a lot of healthy calories (well as everything in life when you have to much of something is not healthy any more). Very Thai food¡¡¡... What i do i grate and apple, i put grate coco and then condensed milk, all mix in a pan and at the top merengue into the oven for 5 minutes and you have the msot amazing dessert. You can tell any of your kids to do it, is really easy...
The rice (rice itself, rice water and rice milk) i use it when my daughter has many pooh in the day ( dont know the proper word) when she has diarrhea, so be carefull to go to the other side: make him not pooh.
other thing the chestnut has a lot of calories as well. And if you can find what is really good is Quinoa, dont know if it is a legume or a cereal, but it has a lot of realy healthy properties and calories and is easy to digest, dosen´t make your belly fill heavy (like beens for example). You can prepare in sweat or salty food. I am prety sure you have in america.
In a month or so i will go to one of the top nutricionist in the world (not just in my country he is world famous) i will get a lot of tips and i will send it to you.

hugs to everyone
 
C

Chilemom

New member
if you dont find coco oil you can find grate coco that has a lot of healthy calories (well as everything in life when you have to much of something is not healthy any more). Very Thai food¡¡¡... What i do i grate and apple, i put grate coco and then condensed milk, all mix in a pan and at the top merengue into the oven for 5 minutes and you have the msot amazing dessert. You can tell any of your kids to do it, is really easy...
The rice (rice itself, rice water and rice milk) i use it when my daughter has many pooh in the day ( dont know the proper word) when she has diarrhea, so be carefull to go to the other side: make him not pooh.
other thing the chestnut has a lot of calories as well. And if you can find what is really good is Quinoa, dont know if it is a legume or a cereal, but it has a lot of realy healthy properties and calories and is easy to digest, dosen´t make your belly fill heavy (like beens for example). You can prepare in sweat or salty food. I am prety sure you have in america.
In a month or so i will go to one of the top nutricionist in the world (not just in my country he is world famous) i will get a lot of tips and i will send it to you.

hugs to everyone
 
C

Chilemom

New member
if you dont find coco oil you can find grate coco that has a lot of healthy calories (well as everything in life when you have to much of something is not healthy any more). Very Thai food¡¡¡... What i do i grate and apple, i put grate coco and then condensed milk, all mix in a pan and at the top merengue into the oven for 5 minutes and you have the msot amazing dessert. You can tell any of your kids to do it, is really easy...
<br />The rice (rice itself, rice water and rice milk) i use it when my daughter has many pooh in the day ( dont know the proper word) when she has diarrhea, so be carefull to go to the other side: make him not pooh.
<br />other thing the chestnut has a lot of calories as well. And if you can find what is really good is Quinoa, dont know if it is a legume or a cereal, but it has a lot of realy healthy properties and calories and is easy to digest, dosen´t make your belly fill heavy (like beens for example). You can prepare in sweat or salty food. I am prety sure you have in america.
<br />In a month or so i will go to one of the top nutricionist in the world (not just in my country he is world famous) i will get a lot of tips and i will send it to you.
<br />
<br />hugs to everyone
 
H

holmfamily1992

New member
Fran,
Thank you for the awesome Idea's with grate coco and the info on chestnuts. I did not know that. And any info you can send me would be great!! I will send you my email. That might be a little easier to send it to.

Claudette,
If you can find the sweat test stuff that would be great. Thank you!! I have been doing some research online but keep finding the same info. Its enough to drive you crazy. And if false positives are uncommon why wouldnt my doctor have started treatment knowing the history. That is what is so frustrating for me. I look at it this way, we have already lost precious time!

Laura, I think I am dealing with the same situation. Dylan they thought had a form of ATypical CF. That may be reason the sweat test turned out the way they did. I know genetics will tells us more.

Jenn,
I was soooooooo mad. That isnt the word I wanted to use! I did talk to Joylyn and she was furious also. She is part of a commitee that deals with decision regarding these kinds of things and she is writing a formal complaint in regards to this matter. She was telling me that there was a family that came to that same clinic and drove forever to get there. They ended up having to stay the night because other testing needed to be done. They didnt know anyone in that area and needed to wash the clothes they had on for the next day and the Renucci house wouldnt let them us a washer or dryer. Unbelievable!!! I would have hurt someone.
And yes, they already did Dylans genetic work up. I dont think they are going to send it for more testing. They have never mentioned it.

Tina
 
H

holmfamily1992

New member
Fran,
Thank you for the awesome Idea's with grate coco and the info on chestnuts. I did not know that. And any info you can send me would be great!! I will send you my email. That might be a little easier to send it to.

Claudette,
If you can find the sweat test stuff that would be great. Thank you!! I have been doing some research online but keep finding the same info. Its enough to drive you crazy. And if false positives are uncommon why wouldnt my doctor have started treatment knowing the history. That is what is so frustrating for me. I look at it this way, we have already lost precious time!

Laura, I think I am dealing with the same situation. Dylan they thought had a form of ATypical CF. That may be reason the sweat test turned out the way they did. I know genetics will tells us more.

Jenn,
I was soooooooo mad. That isnt the word I wanted to use! I did talk to Joylyn and she was furious also. She is part of a commitee that deals with decision regarding these kinds of things and she is writing a formal complaint in regards to this matter. She was telling me that there was a family that came to that same clinic and drove forever to get there. They ended up having to stay the night because other testing needed to be done. They didnt know anyone in that area and needed to wash the clothes they had on for the next day and the Renucci house wouldnt let them us a washer or dryer. Unbelievable!!! I would have hurt someone.
And yes, they already did Dylans genetic work up. I dont think they are going to send it for more testing. They have never mentioned it.

Tina
 
H

holmfamily1992

New member
Fran,
Thank you for the awesome Idea's with grate coco and the info on chestnuts. I did not know that. And any info you can send me would be great!! I will send you my email. That might be a little easier to send it to.

Claudette,
If you can find the sweat test stuff that would be great. Thank you!! I have been doing some research online but keep finding the same info. Its enough to drive you crazy. And if false positives are uncommon why wouldnt my doctor have started treatment knowing the history. That is what is so frustrating for me. I look at it this way, we have already lost precious time!

Laura, I think I am dealing with the same situation. Dylan they thought had a form of ATypical CF. That may be reason the sweat test turned out the way they did. I know genetics will tells us more.

Jenn,
I was soooooooo mad. That isnt the word I wanted to use! I did talk to Joylyn and she was furious also. She is part of a commitee that deals with decision regarding these kinds of things and she is writing a formal complaint in regards to this matter. She was telling me that there was a family that came to that same clinic and drove forever to get there. They ended up having to stay the night because other testing needed to be done. They didnt know anyone in that area and needed to wash the clothes they had on for the next day and the Renucci house wouldnt let them us a washer or dryer. Unbelievable!!! I would have hurt someone.
And yes, they already did Dylans genetic work up. I dont think they are going to send it for more testing. They have never mentioned it.

Tina
 
H

holmfamily1992

New member
Fran,
Thank you for the awesome Idea's with grate coco and the info on chestnuts. I did not know that. And any info you can send me would be great!! I will send you my email. That might be a little easier to send it to.

Claudette,
If you can find the sweat test stuff that would be great. Thank you!! I have been doing some research online but keep finding the same info. Its enough to drive you crazy. And if false positives are uncommon why wouldnt my doctor have started treatment knowing the history. That is what is so frustrating for me. I look at it this way, we have already lost precious time!

Laura, I think I am dealing with the same situation. Dylan they thought had a form of ATypical CF. That may be reason the sweat test turned out the way they did. I know genetics will tells us more.

Jenn,
I was soooooooo mad. That isnt the word I wanted to use! I did talk to Joylyn and she was furious also. She is part of a commitee that deals with decision regarding these kinds of things and she is writing a formal complaint in regards to this matter. She was telling me that there was a family that came to that same clinic and drove forever to get there. They ended up having to stay the night because other testing needed to be done. They didnt know anyone in that area and needed to wash the clothes they had on for the next day and the Renucci house wouldnt let them us a washer or dryer. Unbelievable!!! I would have hurt someone.
And yes, they already did Dylans genetic work up. I dont think they are going to send it for more testing. They have never mentioned it.

Tina
 
H

holmfamily1992

New member
Fran,
<br />Thank you for the awesome Idea's with grate coco and the info on chestnuts. I did not know that. And any info you can send me would be great!! I will send you my email. That might be a little easier to send it to.
<br />
<br />Claudette,
<br />If you can find the sweat test stuff that would be great. Thank you!! I have been doing some research online but keep finding the same info. Its enough to drive you crazy. And if false positives are uncommon why wouldnt my doctor have started treatment knowing the history. That is what is so frustrating for me. I look at it this way, we have already lost precious time!
<br />
<br />Laura, I think I am dealing with the same situation. Dylan they thought had a form of ATypical CF. That may be reason the sweat test turned out the way they did. I know genetics will tells us more.
<br />
<br />Jenn,
<br />I was soooooooo mad. That isnt the word I wanted to use! I did talk to Joylyn and she was furious also. She is part of a commitee that deals with decision regarding these kinds of things and she is writing a formal complaint in regards to this matter. She was telling me that there was a family that came to that same clinic and drove forever to get there. They ended up having to stay the night because other testing needed to be done. They didnt know anyone in that area and needed to wash the clothes they had on for the next day and the Renucci house wouldnt let them us a washer or dryer. Unbelievable!!! I would have hurt someone.
<br />And yes, they already did Dylans genetic work up. I dont think they are going to send it for more testing. They have never mentioned it.
<br />
<br />Tina
 
R

Ratatosk

Administrator
Staff member
That is confusing. Did he give you a numerical result on the sweat test or just say negative? IMO, request copies of the test results. Most hospitals or clinics have a release of information department and you can fill out a form and have the test results, doctor's notes, cultures, xray reports... mailed to you. It's what I always do after each clinic appointment, so I can see for myself what is going on. Otherwise a nurse sometimes just calls me and tells me everything is okay, only to find it's not.

DS had a normal sweat test of 32; however, his test blood was sent to Mayo for testing and indicated double deltaf508.
 
R

Ratatosk

Administrator
Staff member
That is confusing. Did he give you a numerical result on the sweat test or just say negative? IMO, request copies of the test results. Most hospitals or clinics have a release of information department and you can fill out a form and have the test results, doctor's notes, cultures, xray reports... mailed to you. It's what I always do after each clinic appointment, so I can see for myself what is going on. Otherwise a nurse sometimes just calls me and tells me everything is okay, only to find it's not.

DS had a normal sweat test of 32; however, his test blood was sent to Mayo for testing and indicated double deltaf508.
 
R

Ratatosk

Administrator
Staff member
That is confusing. Did he give you a numerical result on the sweat test or just say negative? IMO, request copies of the test results. Most hospitals or clinics have a release of information department and you can fill out a form and have the test results, doctor's notes, cultures, xray reports... mailed to you. It's what I always do after each clinic appointment, so I can see for myself what is going on. Otherwise a nurse sometimes just calls me and tells me everything is okay, only to find it's not.

DS had a normal sweat test of 32; however, his test blood was sent to Mayo for testing and indicated double deltaf508.
 
R

Ratatosk

Administrator
Staff member
That is confusing. Did he give you a numerical result on the sweat test or just say negative? IMO, request copies of the test results. Most hospitals or clinics have a release of information department and you can fill out a form and have the test results, doctor's notes, cultures, xray reports... mailed to you. It's what I always do after each clinic appointment, so I can see for myself what is going on. Otherwise a nurse sometimes just calls me and tells me everything is okay, only to find it's not.

DS had a normal sweat test of 32; however, his test blood was sent to Mayo for testing and indicated double deltaf508.
 
R

Ratatosk

Administrator
Staff member
That is confusing. Did he give you a numerical result on the sweat test or just say negative? IMO, request copies of the test results. Most hospitals or clinics have a release of information department and you can fill out a form and have the test results, doctor's notes, cultures, xray reports... mailed to you. It's what I always do after each clinic appointment, so I can see for myself what is going on. Otherwise a nurse sometimes just calls me and tells me everything is okay, only to find it's not.
<br />
<br />DS had a normal sweat test of 32; however, his test blood was sent to Mayo for testing and indicated double deltaf508.
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>



It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. </end quote></div>



This statement right here shows me you are a smart woman. smarter than most physicians.

why sweat tests are even done boggles my mind......
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>



It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. </end quote></div>



This statement right here shows me you are a smart woman. smarter than most physicians.

why sweat tests are even done boggles my mind......
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>



It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. </end quote></div>



This statement right here shows me you are a smart woman. smarter than most physicians.

why sweat tests are even done boggles my mind......
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>



It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. </end quote>



This statement right here shows me you are a smart woman. smarter than most physicians.

why sweat tests are even done boggles my mind......
 
N

NoExcuses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>holmfamily1992</b></i>
<br />
<br />
<br />
<br />It is very hard for me to understand how the doctors can rely on sweat test for a definate answer especailly knowing how much they can vary. </end quote>
<br />
<br />
<br />
<br />This statement right here shows me you are a smart woman. smarter than most physicians.
<br />
<br />why sweat tests are even done boggles my mind......
 
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