Thursday, January 10, 2019

Updates: Happy New Year, insurance companies, psych/ADHD

I know. I know.  I said back in October that I would write about Morgan's Wonderland (an all abilities theme park) in San Antonio and Sea World.  It is partially written and then I forgot because life was busy happening. I promise though, I will get the post up hopefully soon.

I hope that you all had a great holiday and New Year!  Earlier in December, my parents came to visit and we had a nice time dining out for family dinners (Jack Allen's Kitchen and the historical Threadgills), visiting Santa, and decorating the tree.  On Christmas Eve, Bear's best friend, Jack, and his siblings came over to bake and decorate cookies.  I think that there were cookies buried under the mound of icing and entire bottle of sprinkles.

My life seems to be full of nothing but doctor's appointments and phone calls to either insurance companies or the CDS company that manages our respite care provider's paycheck.  Last week, it was hours of taking politely, but forcefully on the phone with both.  In some ways, I am happy to have a degree in health care because I know how to approach things or when something isn't right.  On the other hand, none of this is my responsibility.  

Ellie was scheduled to have her cecostomy tube replacement, CT angiogram of her abdomen, and an ABR (a fancy hearing test) under sedation on January 4th.  I was so proud of myself for getting all 3 coordinated during winter break.  Nope!  Due to Ellie's hospitalization last month for RSV, adenovirus, pneumonia, asthma, and a pleural effusion, her procedures all had to be rescheduled. I also had to reschedule her pre-op surgical exam. I am so thankful that the interventional radiology nurse was able to get them all together on the same day.  That meant I had to contact GI, ENT, and nephrology to get new orders/authorizations.  Again, this should not be my responsibility.  

Of course, things could not go smoothly.  Two Fridays ago, I got the letter from her disability Medicaid that the CT scan of her abdomen was denied .  It is always on a late Friday afternoon after the offices close and on a holiday weekend. Apparently, she needed to have seen the doctor in the last 60 days and have submitted the reason for test and recent lab results (this sort of seems like common sense to me when ordering something).  I wasn't worried about seeing the doctor as we were seeing the nephrologist this past Monday.  As for the labs, it was unclear if those too needed to be within 60 days.  My concern was having to get them re-drawn.  Back in September, the Dell's lab neglected to tell me that the renal bloodwork needed to be sent to an outside lab an oh, they decided to send it to an out-of-network lab!  I didn't know this until Cigna sent me a letter about it.  The 20% out-of-network coinsurance that I would have been required to pay would have been $1,200!!!!

Ellie's particular disability Medicaid contracts with EviCare for radiology.  The number for questions and appeals on the letter was for EviCare.  That person was incompetent and told me that I am supposed to go through the Medicaid.  The Medicaid rep who was really nice, said that because it is through EviCare, they have no record of the order or denial.  She offered to call them for me.  Gah!  Fortunately, one phone call from the nephrologist (who, by the way, called the same number as me) spoke with the medical director who turned over the decision.

Ellie and Jack

I actually have no answer for that.  Ellie is approved for respite and PCS services through MDCP.  The consumer directed services company that we went with is paid $202.17 through her MDCP budget to manage K's paychecks.  After years of things going relatively well, K started getting paid for only some of her hours - 3 missing paychecks in the last 4 pay periods.  Sometimes the PCS check was missing while other times it was the respite paycheck. The team members assigned to Bear's case would not return phone calls so I had to speak with a supervisor each time. I would be told that they didn't receive the email for x timesheet.  I will tell you that is BS because they were sent in the same email.  Then their excuse of must be an attachment issue or a computer glitch. Well, I started to send them together and separately.  This last one took the cake because I resent the timesheet 4 times, spoke with a supervisor and emailed him the timesheet who then forwarded it to her two team members.  Nothing.  K still wasn't paid.  I call the team members and left another message followed by calling their direct supervisors.  So I left 4 unanswered messages.  It finally got worked out, after  I threatened to contact Health and Human Services for mismanagement of Medicaid funds.  Clearly this was unacceptable so now I am spending time on the phone this week trying to switch over companies.

Did you know that stimulants can cause UTIs (urinary tract infections) in about 5% of those who take it?  Yeah, me neither.  Ellie had been on morning Adderall for about a month and it was working great aside from the whole wearing off after 2.5 hour part!  I was so worried about the tics given the debacle 10 months ago, but it never happened.  We ended up trying Adderall XR and well, let's just say the school asked me if I stopped her ADHD medications.  At this point, she went from being almost completely potty trained to urinating every 45 minutes with complete saturation through her pull-up and clothes.  

While at neuropsych, we tested for an UTI and determined that the increased urination is the result of Adderall XR (of course, increased urination is not a known side effect of Adderall XR) and that it wasn't working because she was peeing it out.  She is now on 2 doses of short-acting Adderall a day.  It is completely out of her system by 1:00pm so it should not affect her ability to fall asleep . . . yeah, you see where this is going.  
However, she started to have her weird sleep issues of taking either 1 hour (this is her norm) to 3 hours to fall asleep.  She'll go 3 or 4 nights of not sleeping to a few nights of good rest. This is even after an increase in her sleep medications.  She is now super hyperactive and impulsive.  Now we need to determine if it is ADHD for the hyperactivity or has she has she gone into a mixed state over as a result of making stimulant medications.

You can read more about E's history of ADHD management and her Mood Disorder:

Thinks she's awesome because she is wearing my PJs

BUST KNEE WHILE AT THE DOCTOR - sorry, y'all this post is getting long and I am getting finger cramps so I will write about this and some other fun stuff in my next post!

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