HMO's, Genetic tests & Pancreatic Insufficiency

ChaufferMom1 · Sep 19, 2006

Hi
All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie

ChaufferMom1 · Sep 19, 2006

Hi
All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie

ChaufferMom1 · Sep 19, 2006

Hi
All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie

anonymous · Sep 19, 2006

I would call your HMO and ask them for their insured appeal process. I would also contact your state insurance commissioner's office as well. It is my understanding that all HMOs (in my state they do) must have a formal complaint resolution process. I would cc your state insurance commissioner on each and every piece of correspondence and don't give up! You are doing the right thing to advocate for your child!! Let me know if I can help steer you in the right direction.

BigBee (not logged in)

anonymous · Sep 19, 2006

I would call your HMO and ask them for their insured appeal process. I would also contact your state insurance commissioner's office as well. It is my understanding that all HMOs (in my state they do) must have a formal complaint resolution process. I would cc your state insurance commissioner on each and every piece of correspondence and don't give up! You are doing the right thing to advocate for your child!! Let me know if I can help steer you in the right direction.

BigBee (not logged in)

anonymous · Sep 19, 2006

I would call your HMO and ask them for their insured appeal process. I would also contact your state insurance commissioner's office as well. It is my understanding that all HMOs (in my state they do) must have a formal complaint resolution process. I would cc your state insurance commissioner on each and every piece of correspondence and don't give up! You are doing the right thing to advocate for your child!! Let me know if I can help steer you in the right direction.

BigBee (not logged in)

NoExcuses · Sep 19, 2006

NoExcuses · Sep 19, 2006

NoExcuses · Sep 19, 2006

Buckeye · Sep 19, 2006

It may help if you could get your daughter's doctor to refer her to
a cf center. I think if the cf center is suggesting the
genetic testing it may carry more weight with the HMO. You
can go to the cff.org site to find a clinic near you. 
 
Pam

Buckeye · Sep 19, 2006

It may help if you could get your daughter's doctor to refer her to
a cf center. I think if the cf center is suggesting the
genetic testing it may carry more weight with the HMO. You
can go to the cff.org site to find a clinic near you. 
 
Pam

Buckeye · Sep 19, 2006

It may help if you could get your daughter's doctor to refer her to
a cf center. I think if the cf center is suggesting the
genetic testing it may carry more weight with the HMO. You
can go to the cff.org site to find a clinic near you. 
 
Pam

anonymous · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: ChaufferMom1

Hi All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie</end quote></div>

Tried to change font for those who could not read it.

anonymous · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: ChaufferMom1

Hi All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie</end quote></div>

Tried to change font for those who could not read it.

anonymous · Sep 19, 2006

<div class="FTQUOTE"><begin quote>Originally posted by: ChaufferMom1

Hi All. I am new here, sorry this is long, but I have a
question if anyone can help. My beautiful daughter is now 17.
For the last 4 years she has dealt with fatigue, stomach and
joint pain and a number of other issues. Little over a year
ago Dr's started paying attention(thought she was just an
anorexic dancer from all the weight loss) when her Vitamin D
and K levels dropped way below normal even though she was eating
very well. Further testing showed gastroparesis and amylase
pancreatic insufficiency. The amylase pancreatic
insufficiency was DX through a CCK stimulation while she was
being scoped. She was re-scoped again 7 months later (D & K
Vitamins dropped again and had GI bleeding), and once again (using
a different lab) the same results, then this past Spring (Vitamin D
levels dropped again) she started having occassional floating
stools...which became constant, testing again showed amylase an
lipase deficiency. Upped the Creon 10 from 3-4 per meal to
7-8 per meal and stools sank. Now we have a big named HMO for
insurance. I use out of network GI and Rheumy (major joint
pain issues) because the HMO would not do anything for us.
Now I am trying to get the HMO to do Genetic testing and
they are turning me down, even though they have all the test
results. She had 1 normal sweat test, 
BUT I questioned
that one because when I got the results I also got blood test
results, and my daughter did NOT have blood tests done at that
time. They say normal sweat = NO CF, but reading here and on other
sites I have discovered that this may not be the case. She
also has chronic constipation, chronic sinusitis, sinus cysts
( on recent CT scan), hyperinflation of the lungs, asthma and
arthropathy of unknown nature. She has been tested for everything
from allergies & addison's to Celiac & Fever Syndrome,
and a few things in between..all negative. How does someone
FORCE an HMO to do these tests? I have paid for a lot of her
previous tests myself and I am broke, I need to figure out how
to get this paid for. Any suggestions would be greatly
appreciated...I just keep arguing and arguing...Thanks
Debbie</end quote></div>

Tried to change font for those who could not read it.

NoExcuses · Sep 19, 2006

NoExcuses · Sep 19, 2006

NoExcuses · Sep 19, 2006

ChaufferMom1 · Sep 20, 2006

WOW Thanks all. I live in Virginia, so I should have thought of
going through the Government. 
Amy I am sorry about the font, I just used what popped up, so I
hope this works, and thanks to ..?.. for changing the font for
me. 
I am not too worried about her staying insured. She just
turned 17 and can stay on our insurance as long as she is in school
(or 25 which ever comes first), and she plans on going
locally, living at home and getting her masters degree in
Psych..it will be a while before that problem gets here, but thanks
anyway. (Our son is 20 and going to Med school next year so I
already checked insurance out) 
The sweat test was given at one of the Hospitals here, but was
ordered through the local pulmo Dr. It is not a CF clinic
though. There is a CF affiliated Doctor there, but it is
basically just an asthma office. My son's asthma was taken
care of there. 
Yes, I am appealing the last refusal I got today! I really do
not know if it is CF or not, but I need to know so she can get the
best possible care. 
Thanks again....... Debbie

ChaufferMom1 · Sep 20, 2006

WOW Thanks all. I live in Virginia, so I should have thought of
going through the Government. 
Amy I am sorry about the font, I just used what popped up, so I
hope this works, and thanks to ..?.. for changing the font for
me. 
I am not too worried about her staying insured. She just
turned 17 and can stay on our insurance as long as she is in school
(or 25 which ever comes first), and she plans on going
locally, living at home and getting her masters degree in
Psych..it will be a while before that problem gets here, but thanks
anyway. (Our son is 20 and going to Med school next year so I
already checked insurance out) 
The sweat test was given at one of the Hospitals here, but was
ordered through the local pulmo Dr. It is not a CF clinic
though. There is a CF affiliated Doctor there, but it is
basically just an asthma office. My son's asthma was taken
care of there. 
Yes, I am appealing the last refusal I got today! I really do
not know if it is CF or not, but I need to know so she can get the
best possible care. 
Thanks again....... Debbie

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