At my Breaking Point

[consmom]

Hi, just to say my son's Dad was like youre husband, when it came back positive he still had a very hard time with the diagnosis, we went through the whole nine yards of blame, denial etc.etc.
YOU know your child better than anyone,trust your gut and believe me the arguments with the insurance companies are great stress relievers!
Yes it would be great to have support from the father but unfortunately some of us do not have an ideal situation and have to go it alone.
I do not know what insurance you have but I know that if it is like ours the best way to fight them is with a social worker, they are great advocates and if they are any good will know all the ins and outs. You may want to check out the CF Pharmacy, they have a legal hot line. I have used them in the past and they have given me great advice and pushed me in a direction that I would not have thought about.

 

[consmom]

Hi, just to say my son's Dad was like youre husband, when it came back positive he still had a very hard time with the diagnosis, we went through the whole nine yards of blame, denial etc.etc.
YOU know your child better than anyone,trust your gut and believe me the arguments with the insurance companies are great stress relievers!
Yes it would be great to have support from the father but unfortunately some of us do not have an ideal situation and have to go it alone.
I do not know what insurance you have but I know that if it is like ours the best way to fight them is with a social worker, they are great advocates and if they are any good will know all the ins and outs. You may want to check out the CF Pharmacy, they have a legal hot line. I have used them in the past and they have given me great advice and pushed me in a direction that I would not have thought about.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote></div>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote></div>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote></div>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote></div>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote></div>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote></div>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote></div>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote></div>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[Emily65Roses]

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

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>momja</b></i>
And if a elevated sweat test comes up the doctor can then authorize further testing. </end quote>

Be careful... many people with CF do not have elevated sweat testing.
Ask them why the doc can't authorize genetic testing? He's not paying for it.
I would keep pushing if I were you..... there's no reason to wait.</end quote>

I just wanted to second this. There are many CFers or parents of CFers floating around whose sweat tests were completely normal. The last thing you want is a false (or no) diagnosis for years when your child could be getting the proper medications (if CF is, in fact, the culprit).

You have to be your child's advocate when it comes to health care. Be pushy (even to the point of demanding if need be). If this doctor won't do it even with your pushing... then you move on. Find another doctor. Visit a CF center. Keep moving around until you find someone that will do the tests you want done.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.

 

[momja]

Thanks again for the respones. I'm just trying to get through this week and then depending on the results of the sweat test I will either push very hard or sit back for the genetic results.

DH is pretty much avoiding the subject which is fine with me right now. Orginally he was going to go with me to Children's this friday to meet with the Nutritionist and for the 3rd sweat test but now he says he can't get work off so I'll have to go it alone.

My parents are coming to stay for a visit and so far they seemed very concerned and supportive so I'm glad they will be here at that time.

I will keep you all posted. Thanks for your support. I'm interested to see what the nutritionist will say when he sees all the Cream, Butter and Nutella in DS diet.