FDA Approval & insurance not covering the drugs

[erinatkins]

Hello ,

My daughter who is 14 has had appendix removed, bowel obstuction from scar tisue (shje had surgury & was vomiting green at time) and scar tissue in intestines causing major pain (surgury again)

During summer she was suddenly unable to have a bowel movement was in hospital a week. They put her on liquid diet, gave her meds galore & did some tests. They put her on prevacid and hyoscymaine and we started giving her more fiber. She has taken laxatives and milk of madgesia when needed.

Then about 2 weeks before Tthanksgiving - she suddenly stopped going again even while she was taking above drugs, we also added glygomax and milk of magnesia again. This went on for a week. We saw colon MD & he said to give her 4 mineral oil enemas and he put her on Zelnorm. By doing this she has been able to have BM's more regulary.

However insurance will not cover Zelnorm because it is not approved for her age. MD has sent in report saying why. We are now trying a peer-to peer review to see if we can get it approved.

This week she has had probem where she knows she needs to go but it is not coming out without using a suppository.

I am a bit concerned since this is not approved for her age but it seems to help & I do not want to stop using it but I am not sure how long we can afford to pay for it. I also so not know if we could be causing more harm than good because we do not know the risks. I also am worried about her getting addicted to laxatives.

Any idea - what I can do? Should we be seeing another MD?

Thanks
Erin

 

[HA]

Hello Erin,

I can understand how you could feel overwhelmed dealing with both your husbands physical health and now your daughters.

I would find a support group that deals with these kind of bowel problems and get some help from them about getting a second opinion or the drug of concern.
I found this page of online support groups for digestive disorders that may point you to somewhere else if they can't help you.
WebMD Community - Access Experts and Others Like You

I'm not sure about the US but in Ontario Canada we have the Trillium Drug Program.
http://www.health.gov.on.ca/english/public/pub/drugs/trillium.html

Ask a pharmacist where you live, if they know of drug plan that may supplement the cost of this medication.

Good luck

 

[erinatkins]

Thanks for the links I will read through them.

I have been able to find 1 prescription benefeit card that can save us $20 on her prescription.

We also have an appointment in February with a pediatric gastro MD who may have some other ideas on what we can try.