Ibuprofen/Tylenol

[rachael]

My son turns 2 tomorrow and we just got our first batch if sugar-free liquid ibuprofen from the compound pharmacy. The co-pay was $50 and it expires in just one month. We can't spend $600/year to have ibuprofen on hand, just to throw away 90% of it. 

What do others use for your very young kiddos? 

[rysmom14]

we ran into the same thing. we had some compounded. It must have been a large amount but the pharmacy called and asked if we wanted that much and it was going to end up being expensive, and most likley unused. we were able to only have then give us enough for round the clock medicine for 3 days. This would give us enough time for get him to see a doctor or to just take him to the ER. So it might be an option to have a smaller amount maf=de up at a lower cost.

Also, I have a pharmacist friend that told me that it is ok to keep it if it's expired. They have to put an expiration date on the lable because it's compounded. the suspension becomes a little less reliable so there will be more clumps and stuff, but it would still be effective. She would not recommend using past 9 month through since there is a chance for bacterial growth.

[rachael]

Thank you, this is helpful! I thought that the co-pay was standard across the board, but I will ask more questions next time. Round the clock for three days sounds like a great idea; that's also plenty of time to get the bigger bottle made up if needed. We only give it a few times every 3-4 months so this big bottle seems like such a waste. And that's great news about the expiration!

[rysmom14]

Not sure if you ever looked in to the loop hole insurance. It's a medical assistance program that we qualified for because we have a diagnosed condition. It picks up all the remaining costs that our primary insurance doesn't cover. My son will qualify until he is 18. Is has been extremely helpful because of the hospitalizations and medicines in the beginning, but we ended up paying nothing. Not sure if it is different for each state, but it's worth looking into.

[jenn123]

Where do you find information on that program ?

[rysmom14]

Alright... so i have been doing som googling this morning and everytime I google Medicaid Loophole insurance, alot of info comes up, but most are related to PA. Here is a number of out one our the PA county websites that helps with the loophole insurance. Maybe call and ask if they know if it is offered in your state. That would be crazy if it wasnt in all states. Here is a blurb off that website and it gives and phone number and email. I hope this is helpful!

The Consumer Health Coalition Helpline can help families figure out which public benefits a child may be eligible for and provide step-by-step help with the application process. Contact Leslie Bachurski at 412-456-1877, ext. 200, or [e-mail]

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[jenn123]

Thanks. The idea of no longer a steady stream of medical bills is amazing !!

[rysmom14]

so I had to call the medicaid office today so I asked them if the loophole insurance is offered in all states, and they told me that they thought that every state should have something similar. He recommended that you call your state or county Welfare and Human services office. When we first started down this road most of the people were not so nice becase they thought i was trying to get social security money every month for him, but when I explained it was for the loophole insurance only, they were much nicer. If I remember correctly I had to fill out the application and provide documentatoin on diagnosis, hospital stays, therapy evals ( if any), income. All kind of fun stuff. we were denied based on our income being to high, (so thats why I wouldnt get the monthy check), by they would give you the insurance as the "loophole" because they can offer the insurance free of charge to anyone with medical conditions no matter what amount of income you have.

[jenn123]

Thank you so much for the information ! I will check it out .

[Stefanie (Ziba)]

I have carnitine and ibuprofen compounded every two weeks. I have them suspend in methylcellulose only, so I refrigerate it and it seems stable for 14 days but seems to sour after that.
Insurance is a pain, so I pay $45 every two weeks for the carn but only $5 every two weeks to have the compounded ibuprofen on hand.

You could also get CVS dye free Ibuprofen and crush but not as exact.

[aj1980]

We have an loophole insurance program in South Carolina that the compounding pharmacy just told me about since it was $70 for 10 days of compounded Tylenol. It's called TEFRA (sp?) I'm going to look into applying.

[rysmom14]

Let us know how things go with the loophole insurance. It has been a total lifesaver. we haven't paid anything out of pocket for Ryan since he was accepted into the program. for medicine, labs, procedures, and regular dr. visits. it covers him until he is 18. we also have regular health insurance on him through my husbands work, but anything that isn't covered, the secondary insurance covers.

[jenn123]

Thank you so much for revisiting this thread. When you first mentioned it, we were recently diagnosed so i had no bandwidth left to address this important matter. Now that my daughter is stable, I do. We had yearly appointment with kidney doctor today and she is aware of this. We have appointment next week to explore. Will let you know if it works out. Thank you again.