Organized Chaos

Well okay then. . . I'm doing pretty good since it is only 3 weeks since my last blog post!  I'm just going to toss out some general updates because we are experiencing our usual organized-disorganized chaos over here.  Of course, I am still flying by the seat of my pants and I am pretty sure things shall continue that way until I am 6 feet under . . . or in an urn.

Psych Update:

Oh yeah, that's right. . . I talked about Ellie's self-harming behaviors a little ways back.  After many sleepless nights, feeling of like a parental failure, and incessant worrying,  I would like to report that after adjusting her mood stabilizer, adding in another baby dose of Adderall, and increasing her strattera, I have a totally different kiddo.  The emotional crying and sobbing in the morning is now more of a rare occurrence.  The agitation with hitting/biting/head banging herself or me in the afternoon has resolved.  She is a little less impulsive.  All in all, Ellie is the HAPPIEST that I have EVER seen her in her entire 9 years of life.  It breaks my heart to know that she had probably been feeling unhappy and out of control for so long.   Now it isn't all roses over here.  The Bear is still her usual toot.  That's just her - Miss Sassypant McToot Turkey Bear - and I wouldn't have her any other way.

Feeling Brave:

I had this brilliant idea that once Bear was off the nighttime oxygen, I would take a trip with her to my hometown of St. Louis, Missouri.  I kid you not, that day in October when they said we could stop the oxygen, I booked a spring break trip back to St. Louis.  Just the two of us.  Yep.  Ellie Bear and me.  As in without Andrew or another adult to help me corral the hyperactive monkey.  Up until a few weeks before our trip, I was having mini freak outs, but in the end, she was an angel [ see psych update above]   It was great to spend time with my family and I got to see some aunts, uncles, and cousins that I haven't seen in 5 years and that haven't seen Ellie Bear in about 7 years.  I have a ton of pics, but I can't share them because I forgot to ask permission.  

Someone was very excited about getting on an airplane

Just Going to Have to Hold It:

Well the Bear is a clever little thing.  E is well aware that the scissors are off limits after the one time I came out of the bathroom and discovered that her doll was missing hair and was sporting a gazillion hair bows.  I thought that I put the scissors high enough up . . . 

Last week Ellie was watching this YouTube video of a little girl getting her haircut.  So we gave her the play-doh scissors . . . obviously that's not good enough because she waited until our respite care provider went to the bathroom to take the real scissors.  You know, the sharp ones that actually cut?   (cheeky thing dragged a chair over to reach them!) Let's just say it is fortunate Barbie got a lop-sided chop and not Ellie's hair.  Needless to say the scissors are in a childproofed locked cabinet. 

Ellie's antics are not only limited to hairstyling.  Nope, yesterday it was the paint.  Girlfriend was aspiring to be a member of The Blue Man group. Clearly it is not safe for any of us to use the bathroom.

Noble Pig is now apparently a beauty salon

Dermatological Fun:

Don't forget your sunscreen, y'all!  Even if it is cold, cloudy, you're only riding in the car, etc.  I'm in my 30s and just had my first pre-cancerous growth removed from my nose on Monday.  I look like I have this nice crater on the side of my noise.  It itches like crazy, but I'll take that over cancer.

Vertigo and Neck Issues:

Once upon a time I got rear-ended 3 times within a 16 month period.  That was the beginning of my lower back issues and my neck issues.  About 3.5 years ago, I had decreased mobility of my neck with significant pain radiating down my left arm with numbness in my hand.  Two steroid shots into the disc space fixed that.  Sadly, the arthritis and cervical spine stenosis will never go away.  I think with Ellie's flop and drops, I re-pinched a nerve as I can barely turn my head to the left and I have pain starting on the back of my head radiating along my left ear to the front of my head.  I have gotten some sports massages and chiropractic work done which significantly helped my headaches, but physical therapy triggered vertigo.  I am pretty much dizzy if I change position too quickly, move my head funny, or stand for too long.  Needless to say I stopped physical therapy and went back to my sports rehabilitation doctor.  I will be getting an MRI tomorrow so wish me luck!

Unable to find photo credit other than Pinterest

Photo: myhealth.alberta.ca

Self Harm and Emotional Rollercoaster: Pediatric Psychiatric Illness

Things have been quite stressful and chaotic over here to the point where I feel exhausted and really need break.  To see my child struggling and not being able to help her is devastating.  I am begging you readers for any advice that you can give me - you can respond in the comments section.

I know that mental illness is something that is not often discussed and that there is a major stigma, especially when it comes to mood disorders.  I write about these issues so that people can become more aware and so they may feel like they are not the only parents out there caring for a child with mental illness.  We all need to support other as it is so easy to feel alone.

She has 8 barrettes and bows in her hair.  She is fashionable like that!

Out of all the random medical issues that Ellie has, the psychiatric stuff is the worst and most stressful.  Being developmentally delayed and mostly nonverbal makes it difficult to know what is going on in that head of hers.  A while back she was diagnosed with a "mood disorder related to general medical condition", but let's just call it what it really is - bipolar disorder.  After an extensive google search for Down syndrome and bipolar, all I found was that there is a significant decreased incidence of mood disorders within the Down syndrome population.  Yippee! There is a strong history of bipolar in my family so there was always the chance that she would have an Axis 1 disorder (depression, anxiety, mood d/o).  To be truthful, I feel like the significant adverse reaction to Vyvanse turned on the gene and triggered this brain change in her.  Add in the fact that both the  neurologist and psychiatrist have determined Ellie's case to be "complex" as she has atypical responses to the typical medications used to treat ADHD and bipolar disorder and an odd way of metabolizing medications.  I mean, of course she is complex.  That is her thing.

I think we wore her out

For the past two weeks, Ellie has been extremely emotional in the mornings.  She may wake up crying and trying to lock herself in her room (a bit of humor: the lock on her door is on the outside so that she can't lock herself in. However, she thinks by pushing in the button before shutting the door that we can't get in) or in the bathroom.  There doesn't appear to be any trigger.

After her morning medications of Adderall (ADHD stimulant) and Trileptal (mood stabilizer), her mood is more stable and her ADHD is well under control.  She takes a lower dose of Adderall late morning, but I do not believe it is a high enough dose as her hyperactivity and impulse behaviors comes back full force.  

Immediately upon getting off the bus in the afternoon, it is like a switch has flipped.  She is extremely hyper, impulsive, oppositional and agitated.  For the past few weeks, if I tell her "no" she screams, cries, and kicks me.  Occasionally, she shoves my face away and has caused me neck pain from the force.  Afternoons and evenings are the worst for her aggression, defiant behaviors, and anger, but then after getting her bedtime dose of Trileptal, she seems to do okay for the bedtime routine.

On Wednesday evening, I saw something that I have not seen before - self harming behaviors.  We were at horse therapy and we told her that she couldn't use a certain horse saddle.  She started to scream and cry while using her fists to hit her head and face and then bit her hand.  Afterwards, she wanted a strong hug from me while crying.  This is not normal behavior for her, even with her psychiatric issues.  This scared me because she could have really hurt herself. 

I have been in near daily contact with the neuropsychologist this week and we determined that she is having trouble regulating her moods and emotions (think a mixed state of both mania and depression) and then she is having rebound ADHD after the stimulants wear off.  Med changes are tricky.  We can only change one medication at a time and I have to do them on a weekend so that I can observe for side effects.  We had to change her blood pressure medication so the psych med adjustments had to be delayed.  We have discussed a few options and we now have a plan in place.  I am hopeful that we will eventually find something that will help her, but I am worried about how long it may take.

My heart breaks for her and I am asking for prayers, positive vibes, and good thoughts so that we may get through this.  I can have my Ellie Bear back.

We are hoping that this mini trampoline will help Ellie.

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:

"BUSTED KNEE WHILE AT THE DOCTOR "

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.

Photo: limoncello.ie

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: https://spoti.fi/2ATh0Bl

PSYCHIATRIC CARE

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.

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!

Runaway Train: Emotionally Raw

Emotional Mess:

I like to think that sometimes it’s ok to have a pity party. To have it out and then take those deep breathes and dust yourself off. Sometimes the pity party lasts an hour, other times a week.  Sometime things suck for a while and you appear to handle it with grace and suddenly, it all comes crashing down at the most inopportune time. I mean, hey, it is totally normal to start crying in the workout section in the middle of Kohls (I’m thinking it would have gone better in the purse section, but oh well).

I am guessing you have by now figured out that I had a pity party in the middle of store and at home and in the car that lasted intermittently for a few days.  It was all an accumulation of things and then the fact that Ellie got 4 diagnoses and 4 new medications all within the span of the week.  I don’t know why the diagnoses bother me.  It is just a label for all the crap that she has been going through for a while now.  Anyway . . . 

It isn’t all medical.  Sometimes raising a developmentally delayed child is rough.  Sometimes raising a child who is delayed with a psychiatric disorder is rough. Sometimes, it is really hard to be around typical kids because then I know what “it could be like”.  

Ellie is almost 9 years-old.  Her speech is lagging way behind - at that of a 22 month-old according to her most recent speech evaluation. She has come a long way since getting her communication device (more on that in a future post), but at times, I am sad.  I want to have a conversation with her.  Hell, I can have conversations with 2 year-olds.  I want to ask Ellie what she did at school today with her not just sign “school” - essentially repeating the last word I say.  Yes, she is really starting to understand things and I am seeing a cognitive explosion, but I want to be able to do things like have tea parties at restaurants.  To have a conversation.  To have her fully potty trained (she is almost there!) and not pooping in her pull up.  I want to snuggle up on the couch and watch an actual movie with her.  Seriously, I still haven’t seen Brave or Moana or Trolls.

On top of that, Ellie’s behaviors are out of control.  For months, we haven’t found anything that worked.  The morning of her neuropsych appt was bad.  I internally screamed “I CAN’T do this anymore!  I am done!”  This of course led to more tears.

The Unquiet Mind:

Ellie has Down syndrome and that is nothing exciting.  She has multiple medical issues.  Also nothing of great excitement.  What is something.  What makes it most difficult to get by day by day is her behavior, her mood swings, her defiance.  

I always knew that she’d end up with an Axis 1 psychiatric disorder given our family history.  I just thought it was years down the road. She definitely has ADHD.  Her case is text book. She’s had it since she was 2 years-old.  We found the miracle drug of Adderall when she was 4.5 years-old.  A light switch went off.  All good things come to an end though.  She was maxed out of Adderall.  Thus began the search for new meds - for months!  We are still searching.  Medications she used to be on either didn’t work (i.e. after 2 months of stopping Risperdal and then restarting it - we saw no change in hyperactivity anymore) or they caused adverse effects (tics, uncontrolled body movements, mood swings, aggression).

I mean it is totally normal to have a Kleenex box flying by your head while in an exam room waiting for the psychiatrist because I wouldn’t give her a tongue blade.

This summer I thought we would get her regulated.  I had discussed with neuro that I was seeing signs of bipolar in addition to her ADHD and thus transferred her care to a neuropsychiatrist.  We’ve been seeing her every 6 weeks and we discovered a few things. 

The Rapid Cycler:

Ellie was on short-acting guanfacine (Tenex) for 3 years.  It is a blood pressure medication that works in the brain.  It worked great for hyperactivity.  WORKED as in past tense being the operative word.  This time, it caused massive mood swings.  Changing from minutes to minutes. Going from extremely hyperactive and singing to yelling, agitation, and hitting herself because I didn’t make her sandwich fast enough.  This is not a normal reaction.  After 3 days, I stopped it.

The Violent Child:

Ellie takes 0.2 mcg of clonidine at night for sleep.  This is another blood pressure medicine that works in the brain. It is also used for hyperactivity.  Nephrology and Neuropsych wanted to do a low dose (0.05 mcg) of clonidine in the morning for both her high BP and ADHD.  It was disastrous.  For the first 3 hours, she was very aggressive - biting, kicking, shoving my face hard, hitting herself.  Then at the peak, she would be a calm angel.  So yes, the clonidine was working once it reached peak, but we couldn’t release her in the world with her violent behaviors.

The Moody Child:

We started Ellie on Strattera for ADHD in May.  We noticed it helped with her focus.  We bumped up the dose in June, less focus but still better than without it.  I finally realized that her moodiness was caused by Strattera.  Interesting thing about this medication.  It works on norepinephrine.  Most antidepressants work with serotonin or norepinephrine - both neurotransmitters in the brain.  In people with bipolar or other mood disorders, a medication like Strattera or Zoloft without a mood stabilizer trigger the mood swings. Finally, Ellie now has the diagnoses of Neuro-developmental disorder and mood disorder with general medical condition (basically a mood disorder, but not a specified on like bipolar or borderline, etc).  We have started her on Trileptal which an anti-seizure medication that also doubles as a mood stabilizer.  Fingers crossed that this medication helps her without many adverse effects.

Coffee Therapy: Happiness in a cup

Superwoman Is A Fictional Character:

There are days where I say “I am done.  I can’t do this anymore.” and those days have lately seems to occur more frequently.  The thing is, we all know that I am not done.  It is what it is.  Ellie and I will face this together.  I am her mother.  Her caregiver and I will never give up on my child.  Ellie is my everything and I would do anything for her.  So no, I am not done and I will move forward as I always have for the past ~9 years.  This does not make me make me superwoman.  This makes me a mother who loves her child and you would be doing the same too.

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