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At my wits end

Discussion in 'Parents of Children with Type 1' started by MommaKat, Jan 26, 2012.

  1. MommaKat

    MommaKat Approved members

    Sep 2, 2011
    A couple of weeks of highs felt frustrating, but now that we're back to constantly heading off lows, I wonder what I was upset about. It's not just that, it's far too many things all rolled up into one, and I cannot sort through it all coherently.

    Niko continues to go low at night. I am beyond tired. I resent her dad so much, but that's likely in part b/c he's an easy target. An un-involved, part time dad who follows through on nothing.

    I just got home from the middle school because she ran out of strips, extra testing b/c she felt she was going low, basketball, etc. The health aide says we have no strips there, but since I dropped off supplies at the beginning, and dd carries her own, she likely mixed Niko's strips with another kiddo. (She even showed me that one kids somehow has two bottles in his kit now, but she's sure they're both his.) Niko still has to get through basketball after school, so there will be more uncovered snacks, and hopefully she'll stay up because she wants to play.

    Checked the mail when I got home, denial letter from medicaid to fill more than 300 strips. Will not auth an early refill, but we're out. Worse yet, dd is now on 6 to 7 injections per day - they denied the increase on pen needles. WTF? (sorry) When she was on only 4 injection per day, we still ran out five days early each month, but at the new number they're basically saying you can have needles for half a month. Don't like it? Too bad.

    Called endo clinic, insurance person who covers for Niko's endo says it's Medicaid, there's nothing we can do. Ah, on the test strips, I'm hearing you, but on the needles, are you cracked? They won't fill the syringes, they won't fill the needles, so how do y'all want us to deliver her insulin for crying out loud. I said, I don't understand, how you can you say that and Not TRY to do something. "It's medicaid, there isn't anything we can do." I'm not proud of myself by any means, but I'm upset with the clinic for so many things, and I finally cut her off with, "You know what, forget it. It hasn't been quite a year, and you guys have never been there for us. You don't address her care, return calls, or do anything. I'll find an (explitve) attorney and a new endo!" Then I hung up - again not proud.

    So, I called medtronic - we were assured by a different insurance person, an ombudsman, and medtronic rep the pump would be covered. Rep said likely not cgm, but the medicaid ombudsman said actually we had grounds to appeal for partial coverage. Today, Medicaid is denying pump as there isn't a medical need. :eek::mad:

    I am sick of this. I am tired. This is not our new 'normal' as I refuse to accept this as normal. It's not diabetes that's the problem. It's the idiots surrounding us - the principal who gets away with firing me and giving a bad ref simply because my children were sick (my other news today - the job that was mine after the formality of ref checks again gone b/c of this one person), the endo who can't be bothered to chat for any amount of time, the un returned phone calls when we need help adjusting, the idea that I can't get something so basic as enough needles for one month, or test strips. (Yes, I'm crying as I type this, how could I not?!)

    And of course, the icing on the cake, another sanction against benefits because I am trying to work from home. Shame on me for trying to work and care for my kids so that we can work our way off assistance - no food for us this month. I'm sure I seem really negative on here sometimes, but I am getting sick of beating my head against the wall, working so hard, and having this be the end result.

    I really don't know what to do right now. Freestyle promise program is not available to us because she has medicaid. I can't afford both a bottle of strips and pen needles every month. Don't even know what I'm asking anymore - better sign off before my computer becomes an unidentified flying object...
  2. emm142

    emm142 Approved members

    Sep 7, 2008
    I'm so sorry. :( I'm sure some people will offer more practical advice, but I just wanted to send cyber-hugs and let you know that from what I've read on here, it sounds like you're an amazing mom to your kids, and that it sounds like you're raising them to be better than all the people you are faced with right now.

    I'll be thinking of you and your family. I hope tomorrow is better. :cwds:
  3. thebestnest5

    thebestnest5 Approved members

    Aug 16, 2006
    Oh, I am so sorry you are going through all of this.
    I do not have experience with Medicaid-so I'm not much help. I find those denials upsetting, too.
  4. BittysMom

    BittysMom Approved members

    Aug 21, 2011
    That is a lot you're up against. You're such a capable woman, and you're doing so much to advocate for Niko, I can only imagine how frustrated you are. I wish I had ideas for you, but I only have long distance hugs to offer. Perhaps make them sign off on any supplies you entrust to their care. That really is the most easily controlled aspect of your problems and shouldn't be happening. Good luck :(
  5. mmgirls

    mmgirls Approved members

    Nov 28, 2008
    will medicad cover syridges and pen needles? also will they cover two brands of test strips? allot of times you can get a different RX for the same purpose.

    I would hope that your endo would be able to give you enough samples to tied you over until you get this all straightened out.
  6. Lisa P.

    Lisa P. Approved members

    May 19, 2008
    Do make sure Medicaid knows this is Type 1 diabetes.
  7. Jake's mom in NC

    Jake's mom in NC Approved members

    May 31, 2011
    Try asking your local hospital pharmacy if they have any programs. The pharmacy I buy the insulin from is the outpatient pharmacy in the hospital and they sell a 3 month supply of insulin for $6. It's worth a try.
  8. miss_behave

    miss_behave Approved members

    Aug 28, 2006
    I'm sorry to hear you're having so much trouble. Could you get her Endo to write a letter of medical necessity for the pump and extra test strips to Medicaid? I don't know if that will help, but its worth a try :cwds:
  9. JaxDad

    JaxDad Approved members

    May 24, 2010
    Here are a couple of possible resources:

    Try the local Catholic Charities or Red Cross, they may be able to help. No you don't need to be Catholic.

    You could also try Islets of Hope

    Lilly Cares

    You probably already know this resource but Colorado Health Care Policy and Financing

    I can give you lots of Lancets (I know you didn't mention them but I have them). As soon as my new meters test strips arrive I can send you the back-up I currently have and whatever strips I have from that. PM me if interested.

    Good Luck.
  10. Connor's Mom

    Connor's Mom Approved members

    Nov 10, 2011
    This is just heart breaking! I was going to suggest contacting the Lilly foundation as well. I am so shocked that your Endo's office cannot supply you with strips or pen needles or at the very least syringes!! Have you tried contacting your closest Children's hospital to see if they could supply you with resources that could help? What about a Shriner's hospital could they help you obtain supplies? Prayers for you abd your family:cwds:
  11. Sarah Maddie's Mom

    Sarah Maddie's Mom Approved members

    Sep 23, 2007
    I'm wondering if you could stretch the pens by using syringes for some routine dosing?
  12. Ali

    Ali Approved members

    Aug 1, 2006
    Another vote for using syringes and bottles of insulin. Another thought is if you can afford it to get the cheapest generic brand test strips with their meter and supplement with that. Try the programs suggested and good luck finding an Endo that can help you get the numbers a bit more stabilized. Sorry. Ali
  13. MommaKat

    MommaKat Approved members

    Sep 2, 2011
    Thanks everyone, for the support and the advice as both are greatly appreciated. I think I just hit a wall today, kwim? I will never, ever give up trying to make things better, and trust that they will eventually get there too.

    After 2.5 hours on the phone, most of it on hold, I spoke with probably the most helpful customer service rep at Medicaid that I've ever encountered. She actually got mad on Niko's behalf when I kind of choked up. (Tears vs frustration vying for control, thankfully neither won out!)

    I learned a few very interesting things:
    • The test strip and pen needle denial was because the prior auth form did not have the proper requesting provider code, or her endo's info.
    • The pump and cgm paperwork was summarily denied because no one at BDC replied to the request for forms documenting medical necessity.
    • Medicaid will likely okay cgm, then deny payment.
    • I will then have the option of opting to pay out of pocket, and if I do, they will then have to cover a portion of cgm supplies because they okayed the device for home use. Good to know before I budget the tax return!!
    • It will take medicaid up to 10 weeks to okay the pump once they do get letter of medical necessity (goodbye April start date...endo wins again.)
    • It will take two weeks for them to process the corrected prior authorizations for strips and pen needles, and can't over ride without the PA in hand.
    • The center won't get the PA in the mail before end of business tomorrow, so I still need to find supplies for two weeks.
    • As much as days like today make me question my sanity in dropping the wrongful termination suit and decision to work from home writing, it also proved that I really do need to be close to and available to school (two more lows, one on the eek side.)
    • The regional rep for Medtronic is a truly awesome person.

    Silver lining, I'm still here, as is my computer, Niko is healthy and happy, and I landed another freelance project that I didn't seek out. (4th of that variety!!)

    Thanks again, everyone. Praying for some sleep tonight. Since 250 is no reassurance, I think I'l just take a nap after dinner. ;)
  14. MommaKat

    MommaKat Approved members

    Sep 2, 2011
    It's surprising to me, too. We go to Barbara Davis which is basically part of Children's Hospital. All I get from them is that they see 60 patients a day and really cannot be asked to do more. We've met families who've gone there for a long time, including my new son in law's sister, who love it. Newer families like our's that I've met feel similar to Niko and I - lost in the shuffle.

    I understand that it's growing very fast with the increase in number of children diagnosed, but that doesn't abdicate their responsibility to provide professional and compassionate care. I actually applied there, I still hold my RN license, and was accepted to a new mentorship program for CDE hours, but they will only interview RNs with a current CDE, and as a result they continue short staffed. It seems to me that more thorough up front care would result in parents becoming comfortable with and knowledgeable about making adjustments earlier on - effectively lowering the burden of care on the center, but I digress. Thankfully I have CWD to turn to.

    We did when we were only using the whole unit pen - used one to pull dosages to the 1/2 unit, and one for dosages to the full. It was working well for us, but the endo center did not like it. Instead of switching to vial and syringe, they put her on the luxura humalog pen with 1/2 unit dosing. Unfortunately, we cannot pull from those with a syringe as it's a rubber stopper at both ends. Injecting air pops the end stopper, pulling without injecting air creates enough of a vacuum to dislodge it.

    The Colorado Kids with Diabetes Coalition (State Health, State ED, and ADA joint program) was instrumental in getting insurance, including medicaid, to cover insulin pens, but also simultaneously disallows vials and syringes in the school. (So what are kids on pump supposed to do if they need a site change?)

    Trying to think outside the box, and realized that we switched to luxura with remaining refills on full unit pens. So, I'll fill those and use syringes which are much easier to come by... Thanks for getting me thinking in the right direction!
  15. Debdebdebby13

    Debdebdebby13 Approved members

    Dec 15, 2011
    I'm so, so sorry you are having to go through all of these incompetent people just to try and keep your daughter well.

    I have no advice, but I agree with you that it really sucks! :-(
  16. zoomom456

    zoomom456 Approved members

    Jan 19, 2011
    Sent you a pm
  17. jbmom1b2g

    jbmom1b2g Approved members

    Aug 10, 2011
    I am so sorry to hear about everything you are going through. I feel for you. I was in tears at the last endo appt after finding out we had to pay out patient services for every appt. Hope you get it all figured out. Also when we were 1st diagnosed we got an embrace meter and the test strips were so much cheaper. Until we hit the deductible

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