ChaufferMom1
New member
<span style=" font-size: x-small; font-family: 'Courier New';">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, <i><span style=
" font-size: x-small; font-family: 'Courier New'; text-decoration: underline;">
BUT</i> <span style=
" font-size: x-small; font-family: 'Courier New';">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
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, <i><span style=
" font-size: x-small; font-family: 'Courier New'; text-decoration: underline;">
BUT</i> <span style=
" font-size: x-small; font-family: 'Courier New';">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