Clonidine Patch Issues ...trip to ER again....

Discussion in 'General Parenting' started by buddy, May 20, 2012.

  1. buddy

    buddy New Member

    Q has had a few issues for the last couple of days and once again it i s on the last 2-3 days of the patches which are supposed to last 7 days. both the ER psychiatrist and ours said they usually rx for every 4 days for this purpose....for some reason, some people's bodies just dont let it keep working for 7 days....

    So I followed that direction starting a couple of weeks ago and what do you know, much better, no full out rages and last week at school they said he had two days with ZERO behaviors of any kind and no aggression all week. (for them, we had a few transition issues but again much briefer and we could get out of it).


    So the doctor called and said they have appealed it to the highest appeal and insurance says no way. Go back to 7 days, nothing they can do. But now we have used more than we should and they only supply a months worth. So before the refill day we will run out....


    I did find two patches from when he was in the hospital so w e will get pretty close, and will have to use oral until refill time. of course that means no m eds at night and waking up with nothing on board. those were our AWFUL mornings.

    Today is day 7. We are still not doing any play outside in front of OUR house (he told them he never gets to go outside which they double checked with me and are not at all worried. I told them to go ask what he did today for nearly the whole day... duh...the zoo (our big zoo by us) so that is two zoo days in a row! yeah, the kid is out all the time.

    But today after the zoo, about 6:30 pm he heard the kids outside, darn buggers were p laying right in front of our door and laughing and it sounded fun. He admitted he was jealous asked to got to he park. I said yes but I had to use the rest room and in that time he ramped up...by the time we got to the car he lost his mind. Swearing, he is going to kill me , himself, and he is going to give up, if he could just die and come back and start over not being autistic then he could play better and life would be better. I lied to him to get him into the car, agreeing to his showing me he could behave maybe he could roller blade in front when we came back. Finally got him in and I admitted we were off to the hospital. (he had grabbed me a couple of times but no hits, just threats which so far he has never ever followed through with). I wasn't waiting this time till I was full of bruises to go. I wanted to avoid 911.

    I got him to take an extra Clonidine and we got there in about 25 minutes. He was s till saying to them that he wanted to slap me, but not to kill me and he doesn't want to hurt himself anymore. Then by the time we got to the behavior unit he was talking to me like nothing happened. no more perseverative statements, no more blurts, put his hand around my shoulder and it seemed like he had no clue why we were there. He could tell you but he just didn't have one bit of the behavior. HOW FRUSTRATING this is! They dont want to up the dose of oral med, say it is too high, but obviously there is not as much going into him with the patch on those last days so giving extra oral is not upping it but making up for the difference.

    At least that is what this ER doc said. They said it is crazy because this happens (needing every 4 days for this purpose) all the time. THey said to contact the company, they would write a note too, and see if we can get them to give us the difference between what insurance will cover...I wont hold my breath.

    This is not how I like to spend my weekends but if I change it during the week then there will be school/therapy days that it is not working as well. I'd rather it be on my longer days with him.

    To make it weirder, the main highway into Mpls is closed so I got lost in not so great areas of MPLS in the dark and while at the hospital all the power went out in the neighborhood. So glad I had my cell phone, it was p itch black. The generators finally came on but only lights in some areas. THe parking ramp was pitch black. We joined two nurses when we left and walked the one on the highest level up to her car and she drove the rest of us. It was like a cave....very spooky and trust me, this is not a great area. Not awful but a few not so pleasant recent stories from the exact area there. I'd so much rather have a Sunday of church and a sunday brunch with family, whatever.... not in our world I guess.


    da*n insurance company.
  2. TeDo

    TeDo Guest

    I'm sorry this keeps happening. I could tell yesterday that things were ramping up for sure. It might not be a bad idea to contact the company that makes the patches. I see commercials all the time from drug companies saying that if people are having trouble paying for their meds to contact them for more options. Put your frustrated and sad voice on and get calling! Make sure to mention how well the patches work for him over the oral. Who knows, maybe they'll include your praises in a commercial or something. LOL
  3. InsaneCdn

    InsaneCdn Active Member

    Definitely follow up with the company - this is a prime case for them to step up to the plate on... Ins. is paying for over half (4 of 7), they aren't being asked to cover all of it... and the "extreme hardship" isn't hard to prove.

    Q is on public ins, right? Anything you can do on a political front?
  4. susiestar

    susiestar Roll With It

    I am so frustrated and furious with your ins co. I have used clonidine patches on the two occasions when my rx's did not arrive in the mail and they were both for every 4 days, NEVER weekly. My doc is VERY conservative (many patients in my area HATE him b/c he is so conservative) and for MOST meds he goes wtih the recommended amt. So if this was weekly then he would only have given one patch per week to me. He is a real stickler for that, esp if you are taking it for the first time or after not taking it in some time.

    As the generic does not work as well, nor does the oral med, this is EXACTLY why the ins co should pay. esp as the doc should have given them records to prove that you tried the generic and the oral first. Since they won't, the rx co very likely will. I would go to www.pparx.org (might be .com) and ask them to help you with the process. I haven't used them, but I do know quite a few people in my area, members of the support group my mother belonged to when it was active, who have had wonderful experiences and successes even AFTER they were turned down for help by the drug cos. I would give this a chance.

    It INFURIATES me that some person at the ins co who likely makes less than $10 per hour (I have worked for ins co's and this is typical wage for this type of position) is telling the DOCTOR how to practice medicine for your son!!! IMO we need some SERIOUS insurance reforms due to this happening far too often.
  5. buddy

    buddy New Member

    Yes, he is on straight MA. Susie, that's what others have told me too. And when you go to any doctor and have to list the meds, people frequently will say, when I say Catapres Patches...oh, so every 3-4 days? The thing is when he was younger it did last six. I always changed it a day early but that was no biggie since you can order them a week before the date due. I guess at least I can do that again once we are all caught up.

    I had no idea it would be so hard to get the PA, we have had other issues, like lost papers and delays but he has never in our lives together had anything denied so this was a surprise and that is why I followed the dr instructions even before the authorization went through. What else can I do? No one in the media will care, this happens to people all the time I think....
  6. Liahona

    Liahona Guest

    This is just plain stupid from a money stand point. The patches would costs less then multiple ER/phos visits.

    That isn't even taking into account the damage Q will probably do if he isn't on the patch.
  7. Bunny

    Bunny Guest


    That's a great idea!! I agree that this is the good way to go. If the insurance will only approve so many per month, but you need more than that they will be able to fill in the gap, so to speak. At least it's a shot. I hope that it works.
  8. InsaneCdn

    InsaneCdn Active Member

    You might be surprised.
    Even here we get the odd media "circus"... and the ones that make media are almost always kids with severe disabilities. Q is a good poster child that way... And being as severely disabled as Q is, the media hype and public knowledge of his brain injury and dxes, doesn't change any of his future... He's adopted - none of his issues are in any way your fault. You're being the "angel" and trying to help him be the best he can be. But sometimes angels need a bit of help. Those are stories the media loves.

    They are also stores tihe drug company loves, because they may be able to tell the story of helping this really needy kid... makes them look good.
  9. DammitJanet

    DammitJanet Moderator Staff Member

    I also met a drug rep in the lobby of my therapists office one time who told me that they have a program to help people who end up being in the medicare gap to get their prescriptions for free. He gave me his business card but I dont have it anymore but I know it was for the maker of Topamax. Have no idea if Catapress is made by the same company but you could check. Im sure you could check.
  10. buddy

    buddy New Member

    Putting the calls in, thanks for the websites too....

    Thanks guys!
  11. BeachPeace

    BeachPeace Guest

    Popping in here for a quick sec - have you looked into Kapvay?
    We could not ever ever EVER get the Clonidine to stay in his system long enough and Catapress was not an option due to Blue's age.
    Kapvay is a long acting version of Clonidine in a pill form. It is the only thing that holds the aggressive, violent behavior in check for us.