Thursday, January 17, 2019

The Busted Knee, Pediatric Mood Disorder, and a Boyfriend

Goodness!  Last week's blog post was getting w a y  too long as that is what happens when I fail to update the blog regularly. . . that and my kiddo seems to have a ton of random stuff that keep popping up.  Anyway, I left off where I typed:


On the first day of winter break, Bear ended up with a busted knee.  She was having a follow up neuropsychiatrist appointment when I mentioned that she was peeing copious amounts of urine and frequently.  To the extent we put her back into pull-ups and it was soaking through them and her clothes about every hour.

The question was: UTI vs. Increased Urination secondary to medication?

Because I am a medical nerd, I researched Adderall XR and urine production.  I discovered that up to 5% of people on stimulants get urinary tract infections [UTI], but no mention of increased urination.  Consequentially, we tested Ellie for a UTI.  This kiddo usually needs to be catheterized for a urine sample. Sadly, she is relatively used to cathing due to her history of urinary retention.  Turkey Bear is strong.  Very strong.  To do a urinary catheterization, I have to hold her upper body while a nurse takes each leg.  The third nurse does the actual catheterization.  Being in a frog-legged position with pressure being pressed down on her leg while Ellie pushes up is a recipe for disaster.


After the cath, I told her to pull up her pants.  She kept falling down and crying.  Being the horrible mom that I am, I thought that she was being defiant.  I figured the crying was because she was still pissed off.  Nope, her left leg was buckling and she couldn't support her weight.  I refused to leave the clinic until the PCP assessed her.  It didn't seemed fractured, but a knee and bilateral hip X-rays were ordered.  She was finally able to stand without too much pain, but still falling.  I had to carry her around until the X-ray.  Of course, I threw out my back. . . again.  After her X-ray, she was going much better in that she was able to walk without pain or falling, but you could see her knee continue to buckled.  It was determined that she strained either the supporting ligaments or tendons.  She wore an ace bandage for a few days after which she decided it was a stylish fashioned statement and wanted one on each leg.  After a week of this, her ace bandage magically disappeared one night.

Ellie head banging to Like A Storm's "LTWYHM" aka
Love The Way You Hate Me
Like A Storm on Spotify:


In addition to making her pee, the Adderall XR didn't do anything for her ADHD.  She was super hyper, impulsive and not listening to directions.  It was so bad that her teacher asked if we stopped her medication.  Given the increase urination, the doctor hypothesized that she just didn't absorb the extended release Adderall.  We decided to go back to morning Adderall and add in a booster dose.

This seemed to help.  After nearly a year of having poor concentration, Ellie was finally able to sit down and color, paint, and play with play-doh.  However, it triggered her mood disorder.  She was taking 3 hours to fall asleep most nights and that was with an increase in her sleep meds and she would wake up much earlier than usual.  Note: this is not the Adderall.  Her midday does is at 10:30am and is out of her system at 1:30pm.  Some nights, she would only take an hour (this was her norm).

Soon, she was extremely energetic and very impulsive, but she could still attend to tasks.  She has always been a big repetitive with her speech - "mama!  first school. then dance", but it was nonstop.  As in as soon as she would finish the sentence, it would start all over.  It is sort of like the typical pressured speech you would see in an adult mania.  She was also emotional and defiant.  We'd tell her no on something and she would just melt down.  The neuropsychiatrist witnessed all this and just knew the E couldn't get control of herself.

For people with mood disorders, it is very common for other psychiatric medications such as stimulants and antidepressants to trigger a mixed state (both mania and depression at once) or a mania.  This is why people are placed on mood stabilizers.  So earlier this week, we increased her Trileptal dose.  I am really hoping that this works for her.  It is so trying for us and especially for her.

Hanging out with Brandon, the co-owner for Noble Sandwich Co
Formerly Noble Pig featured on Food Network.
 We go there every Saturday morning and she will not leave until she
gets to talk to him!

Best Friend/Boyfriend

Before Winter Break, The Bear's class had a winter party which parents were invited to.  It was during this party that I discovered Ellie had a best friend. Not to mention that she and S were all lovey dovey.  They are the same age and apparently were besties last year.  His mom said that S talks about her all the time.  This warms my heart to know that Ellie is making friends!  Over break, they were both at the same drop-in daycare and apparently they went off to a corner to play. . . um, should I be worried?!   What is this canoodling that is going on?!   Nonetheless, I always worry about Ellie connecting with other kids because she is predominately nonverbal and also has her impulsive behaviors such as shirt pulling and stealing toys (and putting them away).

Pajama Thief!

Next Friday will be a fun filled day - cecostomy tube replacement, an ABR (fancy hearing screen), and an angiogram of her abdomen (to look at kidneys).  Currently, we are attempting to add on eye surgery, but it is complicated as the ophthalmologist doesn't usually have OR time on Fridays.  Fingers crossed we can get it all worked out!  I believe that this is her 17th or 18th time under anesthesia and I really want to avoid more procedures.

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!

A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...