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.  

MEDICAL PROCEDURES AND INSURANCE ISSUES

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

WHY ISN'T MY CARE PROVIDER GETTING PAID?

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.

MOOD DISORDER AND ADHD

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:

Abnormal reactions to common ADHD medications 

DNA testing for psychotropic medications

Uncontrolled movements due to Vyvanse / Adderall XR

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!

Hypertension In a Child

In previous blog posts I have written about Ellie's high blood pressure.  I have an update er, well updates.

According to the new pediatric guidelines, for Ellie's age, height %tile, and gender, her systolic blood pressure [top # of BP] should fall around 111 mmHg.  Ellie's average without blood pressure medication is 124 in the LEFT arm only and normal in the right arm.

High blood pressure in a child is usually due to cardiac issues such as narrowing of the aorta (a large artery that branches off the heart) or renal [kidney] issues.  However, with the increasing rates of childhood obesity, doctors are seeing more and more hypertension related to weight, similar to adults.

Flashback: October is Down Syndrome Awareness Month

In August, we were able to rule out all cardiac issues so that is not the cause of her hypertension.  We are currently evaluating her kidney function.  Many doctors start off with a basic metabolic panel that looks at things such as glucose, sodium, potassium, etc, but the main values that a physician looks at from that lab study is BUN and Creatinine.  I won't get into what those things are for, but high levels of BUN and Creatine can be a sign of impaired kidney function.  Ellie's were normal.  Other, more in-depth testing include assessing Renin, Aldosterone, and Angiotensin - again, I will spare you the details of their function.  Ellie's Renin levels are high.  Renin is an enzyme that is secreted by the kidney that helps regulate blood pressure. One of the causes of high renin levels is renal artery stenosis, which is is the narrowing of the artery that supplies blood flow to one or both of the kidneys.  This is something that is very rare with systolic BP usually above 170 mmHG and it is highly unlikely that Ellie has this . . . BUT, as the nephrologist said "this is Ellie".  Plus, she has been on clonidine for years and she is also on a calcium channel blocker BP med so we don't really know how high it would be without these medications. At this point, we are working on scheduling a CT with contrast (angiogram) or her kidneys, but it is not considered urgent.

Flashback: October is Down Syndrome Awareness Month

Hypertension in a child is typically diagnosed when the systolic reading is 10 mmHG above the 95% tile for age, height, and gender.  First line treatment for high blood pressure in a child is a calcium channel blocker - i.e. amlodipine. (Calcium Channel blockers tend to end in "ipine.)  A few months ago we started Ellie on Norvasc.  We some mild improvement in her blood pressure.  The nephrologist says that kids typically end up on higher doses than adults due to their higher metabolic rates so he bumped up her dose.

I don't know what happened and I don't understand it.  I measure Ellie's blood pressure with an automated cuff. This is the same cuff that I have been using for months.  After we increased her Norvasc, I noticed that her systolic readings were back into the mid-120s.  A few weekends ago, I took her BP and it was in the 130s.  I waited a few hours and she was 140 mmHg.  I didn't believe it.  I switched out the cuff to an adult one and took mine.  The I compared it to my Qardio cuff that I use with an app.  Both of mine were the same.  So . . . Ellie's reading was accurate.  I waited an hour and she was 147 mm HG.  Note that she had both clonidine and the higher dosage of Norvasc in her system.  A BP that high in a child is dangerous.  I had to call nephrologist on-call who told me to immediately give her clonidine (it is pretty fast acting) and that if it was still in the 140s in a few hours, she'd have to receive IV anti-hypertensives in the hospital.  It was odd.  I don't know why this happened, but the clonidine did work.

Uh huh . . . how long do you think she'll keep that on?  The eye patch is over her good eye.  The thought is the eye that turns in will correct itself.  We've tried glasses and then keeping her good eye dilated with no change (okay, she refused the glasses).  So this is our last ditch effort.

A few days later, the nephrologist upped her dosage of Norvasc again and it seems to be working.  Her BP has been averaging 110/60 so we are pretty happy with that.  Her renal CT scan with contrast still isn't scheduled as we are trying to do it the same day as her ABR and cecostomy tube replacement.  I hate waiting, but I only want to put her under sedation once.

The blood pressure machine that I use for Ellie is by Contec.  It is no longer sold on Amazon, but eBay has it and a few online medical supply sell it.  I have tried several automatic and manual cuffs, but this machine is the ONLY one that has a TRUE pediatric BP cuff.  Most the ones marketed as pedi are actually infant cuffs.  A blood pressure cuff isn't just about length to wrap around the arm.  It is about width.  It is supposed to cover a specific portion on the upper arm.  If the cuff isn't wide enough, the pressure will read higher.  If the cuff is too wide, the pressure may read lower.

Contact 08A Blood Pressure Monitor - pediatric/child cuff sold separately

photo: uptodate.com

Some cuffs are labeled with #s.  i.e. a child cuff may be labeled as size 9 so it is good to read the measurements.

While the Norvasc is working, it comes with an unfortunate side effect.  For Ellie, it is significantly making her constipation worse (it may cause the opposite problem in some people).  She used to get 250 mL of saline enemas through her cecostomy every other day.  She is now getting 250 mL SMOG enemas [saline, mineral oil, and glycerin] through her tube 2-3 x week - the max we can do and then 2 rectal ones a week - also the max.  It is frustrating because she is still only having a bowel movement every 5-7 days.  Seriously?!?!  She has a freaking tube in her colon for this stuff!  Unfortunately, it is something that Ellie will have to suffer through because I really don't want to her to be at risk for a stroke from a really really really high blood pressure.  If it gets to where is going more than a week, then we will have to figure something out because colitis and bowel perforation would suck.

Anyway, that is the big blood pressure update.  My next post on The Chronicles of Ellie Bellie Bear will be fun!  Horse therapy with Jack?  Yes!  Seeing the dolphins at Sea World?  Yes!  Reuniting with friends from The Wish Connection and seeing a Tim St. John, the magician?  Absolutely!  What about Morgan's Wonderland, an amusement park designed for children and adults of ALL abilities?  What fun!

Fun Photo Flashback: