Re: New to group-insurance questions

[Guest guest]

Hi,

We have Cigna POS and my son, Asher, just had a muscle biopsy done by Shoffner in Atlanta. Shoffner's office did the fighting for me and it was approved fairly quickly. My son has similar symptoms as your daughter. Who are you going to for the biopsy?

Anne R

[Guest guest]

Which hospital is doing the biopsy? Ask the hospital if they are doing the tests on a fresh or frozen biopsy. A fresh biopsy is really the way to go. I have heard of many people saying they received false negatives on a frozen, went back for fresh and was positive for mito. At the Cleveland Clinic, they do the fresh biopsies. They also accept practically any insurance. I have never had a problem without of network claims. I would also expect Mayo clinic to be the same way, also fresh biopsies. Also there is a Shriners hospital in Atlanta who does fresh biopsies. I do not think the Shriners hospital would make you pay out-of-pocket. As far as symptoms go, everyone is different. There are a lot of kids who "look" completely normal. They run, jump and get into trouble just like any other kid. There are also kids who have a lot of physical problems. There is just not enough known about this disease yet. Hopefully soon we will have these answers.

[Guest guest]

Which hospital is doing the biopsy? Ask the hospital if they are doing the tests on a fresh or frozen biopsy. A fresh biopsy is really the way to go. I have heard of many people saying they received false negatives on a frozen, went back for fresh and was positive for mito. At the Cleveland Clinic, they do the fresh biopsies. They also accept practically any insurance. I have never had a problem without of network claims. I would also expect Mayo clinic to be the same way, also fresh biopsies. Also there is a Shriners hospital in Atlanta who does fresh biopsies. I do not think the Shriners hospital would make you pay out-of-pocket. As far as symptoms go, everyone is different. There are a lot of kids who "look" completely normal. They run, jump and get into trouble just like any other kid. There are also kids who have a lot of physical problems. There is just not enough known about this disease yet. Hopefully soon we will have these answers.

[Guest guest]

Hi! Ironically, we are also going to Shoffner in Atlanta. , his assistant, has been a hugh help. She helped me find the correct lingo to use with the insurance company. But I fell like I am fighting with a brick wall. No one at Cigna seems to know anything about our case, even though I call them at least three times a week.

I started off in October when we started the process for approval. Oct. 30th, faxed 63 pages to Cigna. Dec. 6th, we were told that the medical review board did not have them (they were sitting in a file for over a month). Then on Jan. 14th, I was told that 63 pages were not faxed, it was only 4 or 5 pages and that on Dec. 29th a letter went to our peds for more information. My only question was, so 58 pages of that fax was blank? I am having a very difficult time. I know that has had a pretty rough time too, but she is such a sweet person to help like this. Keep me posted on how his outcome is. I'm curious to collect as much information as possible.

Thanks,

Sharon

[Guest guest]

Welcome to the group! I’m glad you

have found us – it always helps to talk to others in similar situations.

I also have a 2 ½ year old, . We got

our diagnoses through a muscle biopsy when he was 7 months. was having

another surgery at the time and I felt it reasonable to do the biopsy while he

was under for the other. That’s the only reason we knew so early –

if just had to have the biopsy I would have waited until he was a little

bit older.

Just to give you an idea – can’t

hold up his head, sit, stand, walk or crawl yet. does scoot on his back

to get around the family room and has a receptive sign vocabulary of 40 words

or phrases. (Ob, yeah, is profoundly deaf to the limits of the equipment!) He

is feed solely through a g-tube. However, he is always happy and the light of

my life.

Sue Ann Bube

President, UMDF – Indiana Chapter

New to

group-insurance questions

Hi everyone! I am new to this group and I am looking

for other

parents that have gone through or are going

through what I am!

My daughter, Hailey, is 2 1/2. We have no real

diagnosis, except

developmental delay and hypotonia. She is not

walking (cruises quiet

well) or talking consistently (will say a few

words or do signs that

mean something to us). We have had several blood

test done and the

results are inconsistent. Her glutamine and alanine

levels have been

constantly high, her lactic acid has fluctuated

(low, high, normal),

and her ammonia level has been pretty consistently

normal (high to

low normal). We were told in July that she needed

a muscle biopsy.

Since that time we have fought with our insurance

company (Cigna) to

pay for the biopsy as an in-network provider (they

are out of our

network) with no luck.

The biggest thing I need help on is, what other

children have these

similar symptoms that are diagnosed with a mito

disorder? Has anyone

else fought with the insurance company over

benefits and what are our

rights? Are there lawyers that can help with this

and do they do free

consultations? I am running out of time! As one

person put it, she

could have a progressive disease that could result

in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please

contact mito-owner with any problems or questions.

Yahoo!

Groups Links

·

To visit your group on the

web, go to:

http://groups.yahoo.com/group/Mito/

·

[Guest guest]

Welcome to the group! I’m glad you

have found us – it always helps to talk to others in similar situations.

I also have a 2 ½ year old, . We got

our diagnoses through a muscle biopsy when he was 7 months. was having

another surgery at the time and I felt it reasonable to do the biopsy while he

was under for the other. That’s the only reason we knew so early –

if just had to have the biopsy I would have waited until he was a little

bit older.

Just to give you an idea – can’t

hold up his head, sit, stand, walk or crawl yet. does scoot on his back

to get around the family room and has a receptive sign vocabulary of 40 words

or phrases. (Ob, yeah, is profoundly deaf to the limits of the equipment!) He

is feed solely through a g-tube. However, he is always happy and the light of

my life.

Sue Ann Bube

President, UMDF – Indiana Chapter

New to

group-insurance questions

Hi everyone! I am new to this group and I am looking

for other

parents that have gone through or are going

through what I am!

My daughter, Hailey, is 2 1/2. We have no real

diagnosis, except

developmental delay and hypotonia. She is not

walking (cruises quiet

well) or talking consistently (will say a few

words or do signs that

mean something to us). We have had several blood

test done and the

results are inconsistent. Her glutamine and alanine

levels have been

constantly high, her lactic acid has fluctuated

(low, high, normal),

and her ammonia level has been pretty consistently

normal (high to

low normal). We were told in July that she needed

a muscle biopsy.

Since that time we have fought with our insurance

company (Cigna) to

pay for the biopsy as an in-network provider (they

are out of our

network) with no luck.

The biggest thing I need help on is, what other

children have these

similar symptoms that are diagnosed with a mito

disorder? Has anyone

else fought with the insurance company over

benefits and what are our

rights? Are there lawyers that can help with this

and do they do free

consultations? I am running out of time! As one

person put it, she

could have a progressive disease that could result

in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please

contact mito-owner with any problems or questions.

Yahoo!

Groups Links

·

To visit your group on the

web, go to:

http://groups.yahoo.com/group/Mito/

·

[Guest guest]

Welcome to the group! I’m glad you

have found us – it always helps to talk to others in similar situations.

I also have a 2 ½ year old, . We got

our diagnoses through a muscle biopsy when he was 7 months. was having

another surgery at the time and I felt it reasonable to do the biopsy while he

was under for the other. That’s the only reason we knew so early –

if just had to have the biopsy I would have waited until he was a little

bit older.

Just to give you an idea – can’t

hold up his head, sit, stand, walk or crawl yet. does scoot on his back

to get around the family room and has a receptive sign vocabulary of 40 words

or phrases. (Ob, yeah, is profoundly deaf to the limits of the equipment!) He

is feed solely through a g-tube. However, he is always happy and the light of

my life.

Sue Ann Bube

President, UMDF – Indiana Chapter

New to

group-insurance questions

Hi everyone! I am new to this group and I am looking

for other

parents that have gone through or are going

through what I am!

My daughter, Hailey, is 2 1/2. We have no real

diagnosis, except

developmental delay and hypotonia. She is not

walking (cruises quiet

well) or talking consistently (will say a few

words or do signs that

mean something to us). We have had several blood

test done and the

results are inconsistent. Her glutamine and alanine

levels have been

constantly high, her lactic acid has fluctuated

(low, high, normal),

and her ammonia level has been pretty consistently

normal (high to

low normal). We were told in July that she needed

a muscle biopsy.

Since that time we have fought with our insurance

company (Cigna) to

pay for the biopsy as an in-network provider (they

are out of our

network) with no luck.

The biggest thing I need help on is, what other

children have these

similar symptoms that are diagnosed with a mito

disorder? Has anyone

else fought with the insurance company over

benefits and what are our

rights? Are there lawyers that can help with this

and do they do free

consultations? I am running out of time! As one

person put it, she

could have a progressive disease that could result

in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please

contact mito-owner with any problems or questions.

Yahoo!

Groups Links

·

To visit your group on the

web, go to:

http://groups.yahoo.com/group/Mito/

·

[Guest guest]

We are still seeking a diagnosis for my son too. I know how frustrating

it can be and dealing with the insurance companies just causes more stress.

As far as help with your insurance company: Look to your state. Some states

have departments of insurance that will help you. Also, if you do need an

attorney, call your County Bar Association and ask how to get a referral.

If you can't afford to pay for one tell them this when you ask for the referral.

Most states/counties have programs to help in these situations.

Good luck.

haileybugsmommy2001 wrote:

Hi everyone!

I am new to this group and I am looking for other

parents that have gone through or are going through what I am!

My daughter, Hailey, is 2 1/2. We have no real diagnosis, except

developmental delay and hypotonia. She is not walking (cruises quiet

well) or talking consistently (will say a few words or do signs that

mean something to us). We have had several blood test done and the

results are inconsistent. Her glutamine and alanine levels have been

constantly high, her lactic acid has fluctuated (low, high, normal),

and her ammonia level has been pretty consistently normal (high to

low normal). We were told in July that she needed a muscle biopsy.

Since that time we have fought with our insurance company (Cigna) to

pay for the biopsy as an in-network provider (they are out of our

network) with no luck.

The biggest thing I need help on is, what other children have these

similar symptoms that are diagnosed with a mito disorder? Has anyone

else fought with the insurance company over benefits and what are our

rights? Are there lawyers that can help with this and do they do free

consultations? I am running out of time! As one person put it, she

could have a progressive disease that could result in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please contact mito-owner with any problems or questions.

[Guest guest]

We are still seeking a diagnosis for my son too. I know how frustrating

it can be and dealing with the insurance companies just causes more stress.

As far as help with your insurance company: Look to your state. Some states

have departments of insurance that will help you. Also, if you do need an

attorney, call your County Bar Association and ask how to get a referral.

If you can't afford to pay for one tell them this when you ask for the referral.

Most states/counties have programs to help in these situations.

Good luck.

haileybugsmommy2001 wrote:

Hi everyone!

I am new to this group and I am looking for other

parents that have gone through or are going through what I am!

My daughter, Hailey, is 2 1/2. We have no real diagnosis, except

developmental delay and hypotonia. She is not walking (cruises quiet

well) or talking consistently (will say a few words or do signs that

mean something to us). We have had several blood test done and the

results are inconsistent. Her glutamine and alanine levels have been

constantly high, her lactic acid has fluctuated (low, high, normal),

and her ammonia level has been pretty consistently normal (high to

low normal). We were told in July that she needed a muscle biopsy.

Since that time we have fought with our insurance company (Cigna) to

pay for the biopsy as an in-network provider (they are out of our

network) with no luck.

The biggest thing I need help on is, what other children have these

similar symptoms that are diagnosed with a mito disorder? Has anyone

else fought with the insurance company over benefits and what are our

rights? Are there lawyers that can help with this and do they do free

consultations? I am running out of time! As one person put it, she

could have a progressive disease that could result in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please contact mito-owner with any problems or questions.

[Guest guest]

We are still seeking a diagnosis for my son too. I know how frustrating

it can be and dealing with the insurance companies just causes more stress.

As far as help with your insurance company: Look to your state. Some states

have departments of insurance that will help you. Also, if you do need an

attorney, call your County Bar Association and ask how to get a referral.

If you can't afford to pay for one tell them this when you ask for the referral.

Most states/counties have programs to help in these situations.

Good luck.

haileybugsmommy2001 wrote:

Hi everyone!

I am new to this group and I am looking for other

parents that have gone through or are going through what I am!

My daughter, Hailey, is 2 1/2. We have no real diagnosis, except

developmental delay and hypotonia. She is not walking (cruises quiet

well) or talking consistently (will say a few words or do signs that

mean something to us). We have had several blood test done and the

results are inconsistent. Her glutamine and alanine levels have been

constantly high, her lactic acid has fluctuated (low, high, normal),

and her ammonia level has been pretty consistently normal (high to

low normal). We were told in July that she needed a muscle biopsy.

Since that time we have fought with our insurance company (Cigna) to

pay for the biopsy as an in-network provider (they are out of our

network) with no luck.

The biggest thing I need help on is, what other children have these

similar symptoms that are diagnosed with a mito disorder? Has anyone

else fought with the insurance company over benefits and what are our

rights? Are there lawyers that can help with this and do they do free

consultations? I am running out of time! As one person put it, she

could have a progressive disease that could result in death, but we

don't know. Can anyone please help me!!!!???

Thanks!

Sharon -South Carolina

Please contact mito-owner with any problems or questions.

[Guest guest]

you might want to look into a medicaid program from the state you live in, even though you have private insurance. When I lived in New Hampshire, was on a med-waiver plan called katie beckett medicaid, his early intervention,easter seals, helped us fill out the application, etc. I know the programs vary throughout the states but it can't hurt to look into!

Goodluck!

(mama to Master ,almost 8!,Mito Complex IV,Autistic traits,MR,Asthma, Oral dysphagia, and who knows what else....

[Guest guest]

you might want to look into a medicaid program from the state you live in, even though you have private insurance. When I lived in New Hampshire, was on a med-waiver plan called katie beckett medicaid, his early intervention,easter seals, helped us fill out the application, etc. I know the programs vary throughout the states but it can't hurt to look into!

Goodluck!

(mama to Master ,almost 8!,Mito Complex IV,Autistic traits,MR,Asthma, Oral dysphagia, and who knows what else....

[Guest guest]

you might want to look into a medicaid program from the state you live in, even though you have private insurance. When I lived in New Hampshire, was on a med-waiver plan called katie beckett medicaid, his early intervention,easter seals, helped us fill out the application, etc. I know the programs vary throughout the states but it can't hurt to look into!

Goodluck!

(mama to Master ,almost 8!,Mito Complex IV,Autistic traits,MR,Asthma, Oral dysphagia, and who knows what else....

[Guest guest]

Also there is a Shriners hospital in Atlanta who does fresh biopsies. I do not think the Shriners hospital would make you pay out-of-pocket.

, This caught my attention, as we have been taking Chelsea to see drs at the Chicago hospital for a few years. It is my understanding that they specialize in orthopedic and burn surgeries, or that may just be the Chicago hosp? Who tests the biopsies at that Shriner's Hosp? Do they work with Shoffner at all, since he is in the area? We have considered taking Chelsea out of state for a repeat biopsy, but have state based ins that will only cover instate care.

Shriner's is a charitable organization and do not charge for their services, the drs work there pro bono. We have never paid anything for appts or lab work they have done.

e, Chelsea's mom(nonspecific mito)

[Guest guest]

Also there is a Shriners hospital in Atlanta who does fresh biopsies. I do not think the Shriners hospital would make you pay out-of-pocket.

, This caught my attention, as we have been taking Chelsea to see drs at the Chicago hospital for a few years. It is my understanding that they specialize in orthopedic and burn surgeries, or that may just be the Chicago hosp? Who tests the biopsies at that Shriner's Hosp? Do they work with Shoffner at all, since he is in the area? We have considered taking Chelsea out of state for a repeat biopsy, but have state based ins that will only cover instate care.

Shriner's is a charitable organization and do not charge for their services, the drs work there pro bono. We have never paid anything for appts or lab work they have done.

e, Chelsea's mom(nonspecific mito)

[Guest guest]

We have considered taking Chelsea out of state for a repeat biopsy, but have state based ins that will only cover instate care.

e,

Michigan is currently paying for Cleveland Clinic. If you want to e-mail me off list I can give you the name of who I talked with in Lansing to get it set up that way if your interested.

Holly