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Intro, Hi, and Question

Posted by on Jun. 3, 2010 at 3:29 PM
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Hi, my name is Heather; I'm married and have a 3 year old boy and an 8 month old daugher, Audrey. Audrey began having infantile spasms at almost 4 months old, and was hospitalized and subsequently diagnosed with tuberous sclerosis. We've not gotten the results back to know if  either her father or I has it, or if it is a spontaneous genetic mutation in her.

She is currently on Sabril (Vigabitrin), Topamax, Keppra, and B6. (and has been on phenobarbital and ACTH in the past) and is currently seizure free and will be trying to wean off of Sabril soon.

My question is: can someone share info with me about how to handle insurance and things of that nature? We currently are all on medicaid, as my husband currently makes so little that we're all covered by medicaid 100%, but in the next year my husband will be graduating from college and getting a better job and we'll be moving to another state (dallas, tx), and when we move I'm scared of how we'll take care of everything. I know there are programs for children with special needs, but would it be like, she's on medicaid and we're all on some form of private insurance? because I know no private insurance would cover all the care she needs. her ACTH alone was $30,000 per vial; i have no CLUE what the Sabril costs. Probably just as much. So if she was no private insurance, we wouldnt even be able to afford the copays.

I don't know if programs that would help us out with her care are run by the state or the federal government...can anyone share with me how we'd get her taken care of once we're all no longer on medicaid for financial reasons?

Thanks :)

by on Jun. 3, 2010 at 3:29 PM
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by Member on Jun. 4, 2010 at 9:44 PM

For us (and I can't say if this would hold true for you or not!), we are all on Blue Cross/Blue Shield through my work.  My son has multiple disabilities (epilepsy, cerebral palsy, etc.), and has additional coverage through the state of Michigan called Children's Special Health.  BCBS pays their share (or, in many cases, none), and CSH covers copays on appts and on meds.  CSH has also covered some equipment (wheelchair, bath chair) that BCBS won't even touch.  Our income is low enough (sadly....) that we do not pay for his additional coverage, but it is based on a sliding scale.  If we made over $60,000 we would pay something like $25/month for his coverage (this is, of course, in addition to what we pay to have him on our regular insurance).  

Okay, sorry for the novel.  Hope this helps!!

by Member on Jun. 5, 2010 at 12:47 AM

Idk, but welcome to the group. Hope others might be of more help.  Good luck to you. :)

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by Member on Jun. 5, 2010 at 12:49 PM

thanks for the responses! (i'll be gone all this week so if i dont respond back after this, that is why).

I've looked online and it seems there is a program in Texas (where we'll be moving within the year)

called "Children with special health care needs" program or "CSHCN".

But everywhere I look i can only find applications for PROVIDERS, not familes. :-/ You'd think even if i had to apply through medicaid for it first it'd still have some sort of link somewhere or something. Bummer. guess i'll keep looking,

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