New to group-insurance questions

[Guest guest]

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