A metalhead and a thief

It is time for an Ellie-ism post!  The other week I was regaling my therapist with tales of Ellie's shenanigans.  As she sat there laughing and I was tearing up from the sheer craziness of it all, I realized that I had my next blog post.  Given the crap going on in our lives and the emotional instability that The Bear is currently enduring, I realized that it is time to embrace the humor in these antics.

Definitely not auditioning for The Voice

*Don't Cry by Guns N Roses playing in background* along with the sounds of a dying baby seagull.

Drew: What is going on?  What is wrong?

Me:*tries hard not to laugh* Ellie fancies herself to be a rockstar.

Do y'all hear that?   The sound of a cat being strangled while being submerged in water during a bath?  That would be the sound of my daughter "singing".  Girlfriend is trying to channel Axl Rose and Robert Plant.

Ellie has been experiencing some emotional outbursts.  These are extreme reactions to things that she cannot seem to pull herself out of.  You cannot rationalize with her and as fast as it starts, it suddenly ends.  It is devastating to watch and unfortunately a few of these outbursts have resulted in me getting bitten or hit.

One (or many) such outbursts have recently occurred in the car when the "wrong" song comes on.  The screaming, the big crocodile tears, and kicking the back of the car seat occurs when I skip one of her favorite songs.  Mind you, I had no idea these were her favorite songs, but this led me to create a 5 song playlist on her iPad in hopes it would get her to chill out.  These songs have been on repeat.

Ellie's Playlist:

Lost It All - Black Veil Brides
In The End - Black Veil Brides
Don't Cry - GNR
Love The Way You Hate Me - Like A Storm
The Devil Inside - Like A Storm


hmmm. . . . perhaps it is good that she can't repeat these words nor understand what the artists are singing.

All in the Name of Fashion

100 degrees out and she insisted on leg warms on both her legs and arms. 

Princess Sticky Fingers

How many of y'all every had a kiddo steal something?  Or maybe you lifted something when you were really little?  Twinkletoes seems to think the drop in day care [Kidspa] is a borrowing facility.  She would be incorrect.  It started off with me finding the random block in her lunchbox or backpack.  I'd talk to her and then make her bring it back telling her "not yours and that's stealing".

I started to search her backpack and lunchbox before leaving Kidspa.  Then. . . well, let's see if I can type this with a straight face. Actually, let me preface this with Ellie wears leggings and as such doesn't have pockets so she improvises.  She is now attempting to walk out of the daycare with items shoved into the waist band of her pants. The first time, we all died laughing.  It was so obvious she was trying to pilfer toys.  She was trying to loot a broken shovel, sunglasses, and a block.  The staff was dying because it was just too funny. I got over being mortified and tried to contain my own laughter.  No need to reinforce this behavior.  Now I walk into Kidspa and say:

Ellie, you are going to listen to your friends, keep hands to self, and not steal!

The Stinker Butt isn't heeding my advice.  The last time, I even patted down her waistband and she still managed to steal a toy.  She comes home, runs to her room, and whips out a magnifying glass!

The Stink Eye

Bear-itude

This kid is killing me with the yelling "no" while crossing her arms and stomping her foot.  She's like a teenager!

Breaking and Entering 

Ellie Bear seems to be headed down a dangerous path here.  The setting: speech therapy waiting room.  For speech and OT, there is a big waiting room and then two locked doors that lead to the therapy rooms and gym.  As I am talking to the speech pathologist before therapy starts, Ellie reaches into her waistband and whips out her backpack tag (it's like a luggage tag/card).  She runs up to the door and tries to "scan" her tag.  That pretty much had the entire waiting room in stitches.  I guess Turkey Bear was really excited about therapy.  Sadly, her backpack tag didn't unlock the door.

First day of 4th grade.

The Little Parrot

Ellie's speech has exploded over the past few months so she is repeating a lot of words that we say.  They are not clear to most people, but for the most part I can understand about 50%.  Little Miss hasn't quite grasped the meaning of pronouns in verbal language, but she seems to understand what "not yours" means.  If she wants something - i.e. she wishes to ride in she random car in the parking lot, wants a toy, or contemplates taking Andrew's sunglasses, etc - she taps it and tells herself "not yours. . . Daddy's!". (I am always chopped liver).  Her newest is if it isn't' something we want her to do (i.e. color the table), she yells:

"Ah ah!  No ma'am, not yours!"

So parents, if you are wondering if your kids pick up things you do and say - they do!

Someone Thinks She's 

A Swimsuit Model

There you have it. . . a short list of the most recent Ellie Antics.

❤️❤️❤️❤️

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Say What?! - Pediatric Hirsutism and Stress!

Hi y'all!  Can you all feel the stress radiating from me and hear my screams from Texas?  Just when my stress and anxiety levels start to taper down, something happens to send them skyrocketing again.  Seriously, can this kiddo have anything else?  It is like Ellie is the poster child for random, non major (thank goodness!) medical conditions that always leave health care providers stumped.  Why?!

*Please note that aside from Ellie's low thyroid, these medical conditions discussed in this blog are not related to Down syndrome.*

Hirsutism:

Yesterday was Ellie's neuropsychology appointment (more on that in a later post).  I brought to the nurse practitioner's attention abnormal hair growth - something that started a few months ago.  My thought was that it may be her Trileptal (mood stabilizer/antiseizure medication).  Yes, it isn't listed as a side effect, but. . . "it's Ellie".  This led to the other neuropsychologist evaluating her and saying it's odd followed by the Comprehensive Care doctor also saying it's odd.  All said - "I am not sure what the cause is.  This is atypical.  Perhaps it is the Trileptal, but that makes no sense.  However, this is Ellie".

Abnormal hair growth or hirsutism is not often seen in kids.  For Ellie, she has increased and darkening hair along her arms and legs as well as fine hair, also darkening along her spine. Some people refer to it as lanugo.  The Princess refused to cooperate for a picture so check out the one from a Dermatology journal below.  Often times, the hirsutism also occurs on the face along upper lip and occasionally the chin and side burn area.  Thankfully, we are not seeing that . . . yet. . . hopefully never.  The anxiety over facial hair makes me want to puke.  I don't want to shave my 9 year-old's face!  I don't know if it is transient and will eventually fall out or if it will be permanent.  Cue: Mama Bear crying, screaming, and having a heart rate of 180.

Photo Credit: Our Dermatology Online Journal

Hirsutism is most common among woman who have polycystic ovarian disease.  Ellie is too young for that and there is no family history.  Four, yes, I said FOUR, healthcare providers (including endocrine from a few months ago) and myself have concluded she is not in puberty.  Plus, the distribution of hair would be more along the lines of the usual puberty patterns - think legs, underarms, and genital region.

Other causes include long-term use of steroids such as prednisone and Cushing's Syndrome.  All of these increase one's cortisol levels.  Cushing's Disease, which can develop suddenly, is rare in children and is often the result of an adrenal gland, which sits above the kidneys, tumor which also causes increased cortisol levels.  

Testing for Cushing's Disease is a pain in the butt and not all that accurate.  One test involves analyzing cortisol levels via blood draw in the morning and at midnight.  Oh yes, midnight.  What lab is open at midnight?  A 24 hour urine collection.  Yep, you read that right - you are basically going to deliver a gallon of pee to the lab.  Also a dexamethasone-suppression test, which I don't completely understand.

Symptoms include:

-moon face/round face

-truncal obesity: excess fat along the back, abdomen

-high blood pressure

-high blood sugar

-striae/purple lines 

-hirsutism 

-absent menstrual cycle

-males: increased breast tissue

-poor wound healing

All of us have concluded that Cushing's Disease is very unlikely since her only signs are the hair growth and the high blood pressure.  The high blood pressure is also atypical in that it is in her left arm only and she has high renin levels (produced in kidney).  Ellie has her follow up with the nephrologist this afternoon so I plan to talk to him about it.

As it stands, the Comprehensive Care doctor is going to do an extensive literature review as well as consult with endocrine.  I for one would Like to have for harmonium levels drawn especially testosterone. 

Not-So-Fun Fact: hair along the spine is is slightly more common in Down syndrome than in the general population, BUT not even close to people Ellie's age.

I hope to get in a blog post soon on Ellie's strabismus surgery from the end of January as well as a psych update.  In other news, I managed to re-pinch a nerve in my neck which is causing left-side neck, head, should, and the upper back of the arm pain.  It isn't intolerable, but the headaches and shoulder get pretty bad and I can barely turn my neck to the left.  So, hello PT twice a week because I totally have all the time in the world for that.  

Thank you everyone who offered up prayers, good vibes, positive thoughts, etc after my last blog post.  I would very much appreciate if you would continue to think of Ellie Bear.

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!

Surviving the Storm and a Speech Explosion

I want to thank everyone for the support that I received with my last post.  It is hard to be so open and honest, but I have learned that many people have felt the same way and many people have reached out to me offering support.  When I write these posts, it is for 2 purposes - to help me process my thoughts and to also let other people know that they are not alone.  Since the post, I have had actual adult conversations that were not with my husband, mom, or doctors.  So wooohooo!

We are surviving over here.  School has started and Turkey Bear managed to miss the first day.  Because of her psych issues, she lost it at cardiology on August 1st.  The EKG was a catastrophe so we had to give up.  The echo.  Well she was really excited about the echo - just hopped right up on the table and yanked her gown open.  I kept showing her pictures of her doing the renal ultrasound and said it is like that, but on her heart.  She would say “yeah yeah” and point to her heart.  Yeah . . . so when the tech put the wand on her chest, she got angry.  Kicking.  Screaming.  Yanking the wand to her abdomen because the tech was “doing it wrong”.  My little juvenile delinquent’s behavior led to ordering the echo and a CT scan angiogram (a fancy way of saying looking at blood vessels via CT scan) under sedation.  Of course the only day they could do it was the first day of school.  She’s totally starting off the school year on the right foot.

Why we are seeing Cardiology . . . again.

Ellie "helping" with her renal ultrasound in May.

I believe it was her 18th or 19th time under sedation/anesthesia and sadly they remember us.  Although, mainly because I stand there and say things like “she’ll need and I&O cath due to urinary retention” and  “could you give her that propofol again before you pull her out of anesthesia because she has emergence delirum?” as I hand them a word document detailing medications, dosages, why on them, and who prescribes them.  Apparently, most parents don’t do that? Just in case, y’all are wondering, emergence delirium is when the patient comes out confused after anesthesia.  Bear is a “tad” okay, very combative afterwards.  She has no qualms about ripping her IV out with her teeth (yes, through the tape) while kicking me from her bed with nearly enough form to knock me over.  Procedure and surgery days are so much fun!

I feel like in the top 2 pics that it looks like she just walked in her room drunk and collapsed on the bed.

Happy news!  Ellie has officially been discharged from cardiology!  Happy dance.  Happy dance.  Yay!  We dropped a specialist!  

Ellie’s heart is structurally normal.  We were looking at her aorta to see if it was narrowed and that was the cause of her high blood pressure [BP] in her left arm.  It isn’t because her aorta is normal!  Her left ventricle (the left lower chamber of her heart) has normal thickness.  With high BP, the heart has to work very hard to pump and the left ventricular wall gets thick.  She does not have this! Ellie does have a right aberrant subclavian artery that is looping around the back of her esophagus causing some narrowing.  The cardiologist says she will not move the artery unless she has lots of choking on solid food episodes and that has only happened a few times where she had to make herself throw up.  Anyway, we still don’t know what is causing her high BP.

Normal position of arteries branching off the aorta of the heart.

Ellie's arteries

Of course this means we get to go to nephrology every 2 weeks until we get her BP normal.  She is one Norvasc since the clonidine caused aggression and we have since gone up on the dose.  It seems to be working.  At her well check, we will do blood work that looks at kidney function.  I am pretty sure The Bear is fine from a kidney stand point.  Who wants to bet that we will never find the reason for her high BP?  Those who say we will get to watch Ellie for an entire week while I run off to a deserted island.  

Now in other, fun exciting news, Ellie Bear is really trying to talk.  

When I first heard her say “bye y’all”, we were leaving the drop in day care and I had no idea what she was saying.  It wasn’t until I put her in the booster seat that I figured it out.  The little turkey is a true Texan.

Someone loves swimming!

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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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