Going crazy!!!

W

worriedmom

Guest
I've only posted once before but I have been browsing and gathering lots of info. I have to say that it is such a wonderful and informative site and you all seem like such nice people that maybe you can offer some support to a mom who is going out of her mind right now! I have an almost three year old who suddnely became sick with a variety of hopefully coincidental symptoms of CF after a couple of recent admissions to the hospital. Her ID dr. wanted to order a sweat test to R/O CF . Well, we went for thye sweat test and they were not able to collect a drop of sweat!! It seemed like forever to get the test done and now we have to do it all over again..I know I shouldn't be complaining, she is happy and seems uneffected by this. Mom on the other hand, like I said is going crazy. I have to say the waiting game is the worst. Any words of encouragement right now would help.
 
W

worriedmom

Guest
I've only posted once before but I have been browsing and gathering lots of info. I have to say that it is such a wonderful and informative site and you all seem like such nice people that maybe you can offer some support to a mom who is going out of her mind right now! I have an almost three year old who suddnely became sick with a variety of hopefully coincidental symptoms of CF after a couple of recent admissions to the hospital. Her ID dr. wanted to order a sweat test to R/O CF . Well, we went for thye sweat test and they were not able to collect a drop of sweat!! It seemed like forever to get the test done and now we have to do it all over again..I know I shouldn't be complaining, she is happy and seems uneffected by this. Mom on the other hand, like I said is going crazy. I have to say the waiting game is the worst. Any words of encouragement right now would help.
 
W

worriedmom

Guest
I've only posted once before but I have been browsing and gathering lots of info. I have to say that it is such a wonderful and informative site and you all seem like such nice people that maybe you can offer some support to a mom who is going out of her mind right now! I have an almost three year old who suddnely became sick with a variety of hopefully coincidental symptoms of CF after a couple of recent admissions to the hospital. Her ID dr. wanted to order a sweat test to R/O CF . Well, we went for thye sweat test and they were not able to collect a drop of sweat!! It seemed like forever to get the test done and now we have to do it all over again..I know I shouldn't be complaining, she is happy and seems uneffected by this. Mom on the other hand, like I said is going crazy. I have to say the waiting game is the worst. Any words of encouragement right now would help.
 
J

JazzysMom

New member
First thing I can suggest is that you not put the cart before the horse. IF it turns out to be CF you cant change that. BUT you can use that to help try to keep her health at bay. Its easy for me to say I know!~! Any more ?? please ask!
 
J

JazzysMom

New member
First thing I can suggest is that you not put the cart before the horse. IF it turns out to be CF you cant change that. BUT you can use that to help try to keep her health at bay. Its easy for me to say I know!~! Any more ?? please ask!
 
J

JazzysMom

New member
First thing I can suggest is that you not put the cart before the horse. IF it turns out to be CF you cant change that. BUT you can use that to help try to keep her health at bay. Its easy for me to say I know!~! Any more ?? please ask!
 
M

Mommafirst

Guest
Step away from the computer screen. I know, sounds impossible in a time like this. But it might be easier to get through the agonous waiting period if you try not to do too much research. I feel for you, the limbo of the waiting was just soooo hard. Harder for me than actually hearing the words of the diagnosis, harder than dealing with CF!! Once you know what you are dealing with and have a definitive answer, it really is easier to accept. I wish you the best of luck, and hopefully a clear and easily recongnized NEGATIVE for CF.
 
M

Mommafirst

Guest
Step away from the computer screen. I know, sounds impossible in a time like this. But it might be easier to get through the agonous waiting period if you try not to do too much research. I feel for you, the limbo of the waiting was just soooo hard. Harder for me than actually hearing the words of the diagnosis, harder than dealing with CF!! Once you know what you are dealing with and have a definitive answer, it really is easier to accept. I wish you the best of luck, and hopefully a clear and easily recongnized NEGATIVE for CF.
 
M

Mommafirst

Guest
Step away from the computer screen. I know, sounds impossible in a time like this. But it might be easier to get through the agonous waiting period if you try not to do too much research. I feel for you, the limbo of the waiting was just soooo hard. Harder for me than actually hearing the words of the diagnosis, harder than dealing with CF!! Once you know what you are dealing with and have a definitive answer, it really is easier to accept. I wish you the best of luck, and hopefully a clear and easily recongnized NEGATIVE for CF.
 
K

ktsmom

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

Step away from the computer screen. </end quote></div>

LOL! So true! Reading too much at this point will only drive you crazy with worry and second guessing.

Are they doing the sweat test somewhere that they know what they are doing? What kinds of symptoms does your daughter have? When will the second sweat test be done? Has anyone doc talked about genetic testing yet?

I hope you get your answers soon, and either way let us know.
 
K

ktsmom

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

Step away from the computer screen. </end quote></div>

LOL! So true! Reading too much at this point will only drive you crazy with worry and second guessing.

Are they doing the sweat test somewhere that they know what they are doing? What kinds of symptoms does your daughter have? When will the second sweat test be done? Has anyone doc talked about genetic testing yet?

I hope you get your answers soon, and either way let us know.
 
K

ktsmom

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

Step away from the computer screen. </end quote></div>

LOL! So true! Reading too much at this point will only drive you crazy with worry and second guessing.

Are they doing the sweat test somewhere that they know what they are doing? What kinds of symptoms does your daughter have? When will the second sweat test be done? Has anyone doc talked about genetic testing yet?

I hope you get your answers soon, and either way let us know.
 
W

worriedmom

Guest
They did the sweat test at JSMUC. We live in NJ..it is about 30 min from us. The tech that performed the test said they do about 4-5 per day. I'm new to this so I don't know if that is alot or not and she seemed like she was pretty knowledgable during the test. I've been trying to sty away from the computer..but it is so hard. I feel like if it is CF I want to know what we are up against and not go into this blindly, if that makes any sense. As far as her symptoms, Iam hoping they are all just a bad coincidence. She has had a 7 lb. weight loss in 2 months, dx w/gallstones and several hepatic cysts, irregular mucusy,bloody sometimes stools(watery and hard..not to be too gross). Anemic which they say caused a heart murmur, two serious lung infections in 3 weeks with 2 hospitalizations( one which almost required a chest tube) and now she has asthma, they tell us. Her Id dr. wants to see her again on Wed. to I guess tell us our options and possibly order another sweat test. I asked her pedi dr. about genetic testing and he said the only one he knew about was the one that tests for the most common 32 (sorry I don't know all the names of all these tests) so he felt we should go abck to our specialist and speak to him. We also have appts with GI in end of month and Pulmon. in May.
 
W

worriedmom

Guest
They did the sweat test at JSMUC. We live in NJ..it is about 30 min from us. The tech that performed the test said they do about 4-5 per day. I'm new to this so I don't know if that is alot or not and she seemed like she was pretty knowledgable during the test. I've been trying to sty away from the computer..but it is so hard. I feel like if it is CF I want to know what we are up against and not go into this blindly, if that makes any sense. As far as her symptoms, Iam hoping they are all just a bad coincidence. She has had a 7 lb. weight loss in 2 months, dx w/gallstones and several hepatic cysts, irregular mucusy,bloody sometimes stools(watery and hard..not to be too gross). Anemic which they say caused a heart murmur, two serious lung infections in 3 weeks with 2 hospitalizations( one which almost required a chest tube) and now she has asthma, they tell us. Her Id dr. wants to see her again on Wed. to I guess tell us our options and possibly order another sweat test. I asked her pedi dr. about genetic testing and he said the only one he knew about was the one that tests for the most common 32 (sorry I don't know all the names of all these tests) so he felt we should go abck to our specialist and speak to him. We also have appts with GI in end of month and Pulmon. in May.
 
W

worriedmom

Guest
They did the sweat test at JSMUC. We live in NJ..it is about 30 min from us. The tech that performed the test said they do about 4-5 per day. I'm new to this so I don't know if that is alot or not and she seemed like she was pretty knowledgable during the test. I've been trying to sty away from the computer..but it is so hard. I feel like if it is CF I want to know what we are up against and not go into this blindly, if that makes any sense. As far as her symptoms, Iam hoping they are all just a bad coincidence. She has had a 7 lb. weight loss in 2 months, dx w/gallstones and several hepatic cysts, irregular mucusy,bloody sometimes stools(watery and hard..not to be too gross). Anemic which they say caused a heart murmur, two serious lung infections in 3 weeks with 2 hospitalizations( one which almost required a chest tube) and now she has asthma, they tell us. Her Id dr. wants to see her again on Wed. to I guess tell us our options and possibly order another sweat test. I asked her pedi dr. about genetic testing and he said the only one he knew about was the one that tests for the most common 32 (sorry I don't know all the names of all these tests) so he felt we should go abck to our specialist and speak to him. We also have appts with GI in end of month and Pulmon. in May.
 
C

Childressj

New member
Worried mom, I am with you, totally! we are playing the waiting game also. I posted a forum called "my 13 year old son, Help ME. "
He had two Borderline sweat test and we are awiting the genetics testing to come back to make a definitive diagnosis.
Everyone here seems to know many things that we don't like:
1. Sweat tests are not consistent
2. Get a FULL genetic screening that tests for 1500 genes.
3. Make sure that who ever does the sweat test is credialed
4. If I have to do any of this again, I will sure know what needs to be done next time.
Waiting makes us moms pretty crazy though, and reviewing the internet constantly is all I seem to be good at recently. I agree I need to step away from the computer....... Thanks to all for your help. and Worried mom-you are not alone!
 
C

Childressj

New member
Worried mom, I am with you, totally! we are playing the waiting game also. I posted a forum called "my 13 year old son, Help ME. "
He had two Borderline sweat test and we are awiting the genetics testing to come back to make a definitive diagnosis.
Everyone here seems to know many things that we don't like:
1. Sweat tests are not consistent
2. Get a FULL genetic screening that tests for 1500 genes.
3. Make sure that who ever does the sweat test is credialed
4. If I have to do any of this again, I will sure know what needs to be done next time.
Waiting makes us moms pretty crazy though, and reviewing the internet constantly is all I seem to be good at recently. I agree I need to step away from the computer....... Thanks to all for your help. and Worried mom-you are not alone!
 
C

Childressj

New member
Worried mom, I am with you, totally! we are playing the waiting game also. I posted a forum called "my 13 year old son, Help ME. "
He had two Borderline sweat test and we are awiting the genetics testing to come back to make a definitive diagnosis.
Everyone here seems to know many things that we don't like:
1. Sweat tests are not consistent
2. Get a FULL genetic screening that tests for 1500 genes.
3. Make sure that who ever does the sweat test is credialed
4. If I have to do any of this again, I will sure know what needs to be done next time.
Waiting makes us moms pretty crazy though, and reviewing the internet constantly is all I seem to be good at recently. I agree I need to step away from the computer....... Thanks to all for your help. and Worried mom-you are not alone!
 
K

ktsmom

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

They did the sweat test at JSMUC. We live in NJ..it is about 30 min from us. The tech that performed the test said they do about 4-5 per day. I'm new to this so I don't know if that is alot or not and she seemed like she was pretty knowledgable during the test.</end quote></div>

Yes that is enough, in my mind, that they know what they are doing.

Also regarding your question about the genetic testing - Ambry Genetics does a test called the CF Amplified which is the full testing (someone correct me if I'm wrong, please). Testing for the most common 32 will not catch all of the mutations as there are over 1500 or so.
 
K

ktsmom

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

They did the sweat test at JSMUC. We live in NJ..it is about 30 min from us. The tech that performed the test said they do about 4-5 per day. I'm new to this so I don't know if that is alot or not and she seemed like she was pretty knowledgable during the test.</end quote></div>

Yes that is enough, in my mind, that they know what they are doing.

Also regarding your question about the genetic testing - Ambry Genetics does a test called the CF Amplified which is the full testing (someone correct me if I'm wrong, please). Testing for the most common 32 will not catch all of the mutations as there are over 1500 or so.
 
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