Wednesday, February 14, 2018

The Guilt

noun: guilt
1 1.
the fact of having committed a specified or implied offense or crime.
"it is the duty of the prosecution to prove the prisoner's guilt"
2 synonyms:
3 culpability, guiltiness, blameworthiness; Morewrongdoing, wrong, criminality, misconduct, sin
"the proof of his guilt"

Guilt is a funny thing.  Based off of the definition, I needed to have committed and offense or crime.  The fact of the matter, I feel guilt and yet, I haven’t exactly committed a crime.  Instead, I feel guilt over what I have been putting Ellie through these past 2 months with her ADHD.

I’d love to tell you that we found the right medication and she is now able to sit still, is less impulsive, and is no longer easily distracted, but that would be a big, fat lie.  It has been ADHD baptism by fire medication roulette . . . and I did this to her.  I am the one who wanted to take her off the Risperdal. I had great reasons, but still, I am the one who took away the medication that was working for her.  This goes to the saying “if it ain’t broke, dont’ fix it”.  Well it wasn’t broken and I haven’t fixed it.  Who suffers for it?  My innocent little girl.

Sometimes all you can do is cry in the Starbucks bathroom.

It’s funny how I felt like the sh*t hit the fan on Wednesday with all the following that happened before 10:30am, mind you, and then you lose your calm demeanor a few days later.  Yep, that is what happened. Now of course on Wednesday I was all ready scream out some unpleasant words, but I am trying to be all ladylike and whatnot here in this post.  

Wednesday consisted of a cardiology visit for a high heart rate because endocrine freaked out over her HR of 120 (normal for 8 year-old is 70-110 beats per minute [bpm]).  Ellie’s daytime baseline is 10-137, so yeah, it is rather high.  However, it should be noted her HR has been consistently elevated for the past 3 years and not 1 of her doctors ever cared.  Bear successfully made it through the EKG and echo, but cardio gets the bright idea to do a 24 hour holter monitor to monitor her heart rate and rhythm.  Um. . . right.  Surprisingly, Bear kept the monitor and the 5 electrodes on the entire time. Obviously , I felt it necessary to get that puppy attached to her in such a way she would really have to work to get the thing off. I had tons of tape, 2 abdominal binders, and two shirts to help keep it all on. . . well sort of.  Because I love drama, when I went to remove the monitor, I discovered that the top two electrodes we not completely snapped on!  A few more inappropriate 4 letter words popped out.  Did it happened when I was pulling off the tape?  Did it happen in the middle of the night during her wild acrobatics while sleeping?  Or was it like that the ENTIRE time after the med assistance set it up?  

Holter Monitor

Of course, because she doesn’t have enough going on, I noticed she had thrush (oral yeast infection) while screaming during her exam.

Oh great!  So I call the PCP and beg her to just prescribe the Nystatin over the phone and not have us come into the office.  Okay, I didn’t beg, but I totally would not have been above begging.  Seriously though - Thrush!?  I know it is from her steroid asthma inhaler, Qvar.  It can be a risk which is why you are supposed to wash your mouth out afterwards.  We did that!  

On top of that (yes, I am still on Wednesday), she stank.  Badly like stinky feet mixed with sewer sludge [don't worry, it was better the next day].  I was trying to figure out where the rank odor was coming from.  It was emitting from her cecostomy tube!  It always smells a bit there is some liquid stool back up, which is why we keep it covered with 4 layers of gauze.  Oh no, this smelled way worse.  The ostomy site didn’t look infected and she didn’t have a fever so I didn’t freak out too much.  I decided that rather than figuring out who I am supposed to call - radiology, GI, PCP, wound care nurse, or ostomy nurse, I would do the wait and see approach.  Thankfully, the damn tube which, by the way, does its job, but I bloody loathe with every ounce of my being, will be replaced under anesthesia on the 23rd.

Cecostomy tube: aka Chait Trapdoor.
The surrounding redness is granulation tissue.

Oky, back to cardiology.  The doc refers us back to nephrology for high blood pressure and high heart rate.  For real?  We are really really really trying to go for an even dozen number of specialists here. Some people collect baseball cards, Ellie collects doctors. In her defense, this is something cardiologists typically do and also her urologist referred her back in October (I sort of ignored that recommendation - sigh not sort, I purposefully ignored it).  However, since April, the 3 years of high BP resolved it self.  Her BP has been normal for months!  So here I am trying to figure out why I need to make yet another doctor's appt.  I mean, Bear asks to go to the doctor because she likes the stickers, but I don’t!

Did I mention that all of this happened between 8:00-10:30am?  

The circle stickers on her face are to keep her oxygen tubing in place at night.
They last for 3-4 days so that is why we leave them on.

So back to the whole guilt thing.

The last time I wrote, Bear was just coming off the Vyvanse due to uncontrolled full body movements and tics.  We decided to try Adderall XR.  Things seemed to be going okay.  School said her behavior has been great, but it was wearing off after 3 - 4 hours.  We saw some oral and arm movements, but she had some back before we ever started stimulants with her 4 years ago.  We increased the dose of Adderall XR [long acting] and later added in a booster dose of Adderall [short acting]. Bear started to get up before the roosters at 2:00am every morning and not falling asleep until 7pm that night.  Hindsight is 20/20.  Years ago, this sleep disturbance was happening.  I never attributed it to the Adderall seeing as Drew and I both have insomnia and she ended up having a sleep study showing apnea.  So the movements continue.  We stopped the Adderall XR and switched to Adderall - AM and afternoon.  Friday afternoon I speak with Ellie’s aide.  Yes, her behavior is great but she is still distracted thus requiring lots of redirection, but her facial movements are mostly gone while she still has some arm movements.  Time to call neuro. . . . again.  Then it happens.  Midway through her after school ABA session, the oral movements return along with the body movements.  Okie dokie.  Time to stop all stimulants immediately and send another frantic message to neuro.  

Ellie was on Adderall for 3 years without anything other ADHD medication.  For 3 years, it was a miracle drug.  So what happened?  Were the movements occurring because the Adderall XR was still possibly in her system?  Or did her brain get rewired and it was the Adderall?  I don’t know and frankly, I don’t care.  There are tons more medications to try, but I am done.  Bear is done. She needs a break.

I don’t know about y’all, but I am going to decompress with a chemed from the Red Horn Coffee House and Brewery Co, a book, and later, an excursion to an office supply place - there is just something about those post-its and colored pens.


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Thursday, January 18, 2018

Uncontrolled movements / tics with Vyvanse

  • There are multiple ADHD meds out on the market and everyone has a different type of genetic make up. That means that a medication that works for you may not work for your friend’s child. For example, Ritalin did not work for Ellie, but Adderall helped her for years. The opposite is true for one of her peers. Side effects experienced are not the same from one person to the next. So while Ellie had an uncommon reaction to Vyvanse, it may be the miracle drug for another child. This blog post by no means is intended to slam the ADHD medication Vyvanse or say it is a horrible med because it’s not. All meds, even Tylenol can have serious side effects. This is just a post to update what has been going on with Ellie.*

Video taken at school 6 hours post Vyvanse.

The Beginning 
When Ellie was 22 months old, we saw a developmental pediatrician.  In the room during testing, barely walking, she shoved the exam table across the room, hoisted herself with just her arms onto the table and then rushing down, and mouthed a developmental tool so much that we couldn’t get it out of her mouth to even test her.

At home, she had the continual mouthing making it difficult for her to play with toys, eat, and even use writing implements.  Her hyperactivity looked like excessive, dangerous, non-purposeful climbing.  She would have this glassy look in her eyes.  Then there was the usual impulsivity and distractability.  

Things were so bad that I had to hold her while on the phone, and bring her into the bathroom with me where she would hang from the shower curtain or climb into the sink with the water on.  I was in tears with the developmental pediatrician.  Something had to be done. Thus began Ellie’s journey for managing 

We started off with ABA (applied behavior analysis) therapy, which is often used in Autism, but occasionally in ADHD.  We added in short-acting guanfacine AKA Tenex (a nonstimulant medication).  With the addition of Tenex, the hyperactivity significantly decreased, but she still had the other behaviors.  She was 3 years-old at the time.

Starting Stimulants - A Light Switch
By 4 years-old, it was obvious that the mouthing, impulsivity, and distractability were severely impairing her daily activities and learning.  It was recommended that we try a stimulant medication.  I opted to wait. . . until she was 4.5 years old.  I regret waiting.  She started Adderall after a trial of Ritalin that did not work well.  It took 3 doses changes before we saw anything.  I kid you not, it was like a light switch went off.  She could focus, she could sit, she could finally experience the joys of playing in a sandbox or coloring.

Medication Roulette
As always, good things come to an end.  By 7 years -old, she was maxed out on the Adderall so we added in Risperdal.  This worked well and she finally, after 3 years of not growing, she started to gain weight. .  . a lot of weight and rapidly.  Seven pounds in 6 weeks and she slowly continued to gain over the year.

Of course, 9 months later, the Adderall completely stopped working so stopped it and we added in 10mg of Vyvanse while continuing the Risperdal. It worked!

And. . . More Weight Gain
Unfortunately, 6 weeks ago, Ellie started to experience worsening reflux with vomiting.  The doctor added in Cyproheptadine to increase gastric emptying.  This medication was her old appetite stimulant.  You can see where I am going with this.

Ellie started eating a huge breakfast, 2 lunches at school (she would eat her entire lunch at snack time and then have to buy lunch at lunch time) and would eat from 4pm-6pm.  Which, led to more rapid weight gain.  I felt the need to do something.  As she had gained over 14 lbs in 1 year.

Time to Stop the Risperdal
Yes, the Risperdal work for her behaviors when paired with a stimulant medication, but my thought was we could knock out this mediation and increase the Vyvanse since she was tolerating the 10 mg. Thus, we began a month-long weaning program.  Let’s just say her ADHD was unbearable.  Hitting, hyperactive, oppositional, impulsive with throwing, distracted to the extent that it would take 7 minutes just to get her shoes on (remember the movie “UP” with the dog and “squeril”? - yes, like that). Add in the tantrums due to being unable to regulate herself and also poor communication skills, well, it was tough - especially when she got kicked out of her special needs dance class last week and she couldn’t understand why.

An Undesirable Effect from Vyvanse Increase
Last week, her Vyvanse was increased to 20 mg.  We saw some face rubbing and thought it was allergies.  We also saw some jaw popping, but we thought she was doing it on purpose for sensory reasons.  We were wrong.

On Tuesday, her Vyvanse was upped to 30 mg.  We did it Tuesday as it was a snow/ice day and I could monitor her.  Nothing of great excitement occurred. 

Then Wednesday, after arriving at school, I get the call and a video.  Ellie had uncontrolled movements and tics.  Face rubbing, crossing eyes, head shaking, jaw movements, fingers twitching, arm waving, feet shaking and tapping.  At home, it was so bad that she was practically falling off the toilet and she couldn’t even get food to her mouth.  

Taken 11.5 hours after Vyvanse

How do you treat it?  Well, you don’t.  You have to wait for it to get out of the system.  Vyvanse’s half life is 10-12 hours, meaning that a fair amount of it should be out of her system, but it can take a few days for it to be completely out.  At 13.5 hours, it was just as bad and it was also time for her bedtime Clonidine.  Clonidine is sometimes used to decrease tics in those who have Tourette’s syndrome.  Once it kicked in, it decreased her movements by 50% and she was able to sleep.  This morning, they are much better, but she still has the movements.  Neurology says it may be another 1-2 days before it is completely out of her system.

Where Do We Go From Here?
I am not sure.  There are several other medications out there.  She tolerated Adderall so well that perhaps the long-acting, extended release will work. We could put her back on Risperdal, but she would still need something else with it.  I am nervous and stressed.  I don’t want her to endure trial and error of a bunch of meds.  I don’t want to go through several weeks of finding the right med, the right dose, and with minimal side effects.  My heart hurts for her.

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Sunday, January 7, 2018

Fostering independence and sparking communication

Little Miss Independence

One of the things that we really work on is fostering Ellie’s independence.  This is why she’s been doing trash duty, laundry, dishwasher duty, and feeding the pets for a few years.  Her “folding” leaves much to be desired! She is really into being like Daddy and Mama so she loves to dust mop the wood floor.  Now if only I can get her to do bathrooms!  We are still working on dressing independently, but she did learn how to put on her coat by herself and she is so proud of herself!

Now potty training, that is another story.  Although, I do find it entertaining that she is enamoured with public restrooms.  She tells us 3 x at Noble Sandwich Company she has to go — all because they have black toilets.

At this point, we are teaching her how to manage her medical care.  She helps me make her enema in the kitchen, gets her wound care supplies, and helps with her abdominal binder.  She recently started a daily inhaler for asthma (more on that later) and it learning to do it herself.

Apparently, the pie was so good that she had to dive in face first.  When we told her to use her fork . . . well, she did.


Bear Bear is really trying to talk.  There are sentences, but we don’t understand them.  She made up another a sign and was saying something, but we just didn’t get it.  It wasn’t on her speech device.  The frustration and tantrums were epic.

We finally figured it out when this past week I caught her packing her lunch, loading up her daycare backpack, and putting on her shoes.  Kidspa.  She wanted to go to Kidspa, the drop in daycare aka “play school”.

Unfortunately, it was New Year’s Day so they were closed.  We told her tomorrow. She wasn’t getting it.  We showed her the calendar and really tried to help her understand.  Finally, we told her first she will go to bed and then in the morning she would go to kidspa.  So here it was 2pm on and I see her grab her blanket, turn on her oxygen, turn off the light, and climb into bed. Five minutes later, she comes out and gives me this exaggerated fake yawn and again gets her backpack and shoes.  

Ellie has definitely taken to using her Chat device. 

Me: “Ellie do you love Mama?”

Ellie goes to device.

Ellie: “I love Dada.  I love Baba [grandma]”

I see how I rank.

Happy Holidays

Earlier in December, my parents and brother came down for a visit.  We crammed so much in.  Seeing Santa, riding the train at the mall, decorating the tree and decorating a gingerbread house as well as having a family holiday meal at Threadgills [southern cooking and live music, the armadillo world headquarters, where Janis Joplin got her start].  On Christmas Day, we celebrated my friend’s in-laws’ house which is becoming a lovely tradition. 

As for New Year’s.  Oh yeah, I stayed up late . . . until 10:30pm.  We certainly know how to party in the Theurer household!  We hope that all of your are doing well and that your 2018 is off to a good start!

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Friday, December 15, 2017

Happy Holidays!

I have so much to update y'all on, but I shall save that for later.  Instead, The Theurer Clan would like to wish each and everyone of you a very Happy Holiday!

Stay safe.  Stay warm.  Most of all, have fun!

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Tuesday, November 28, 2017

Speech Breakthrough, an unexpected IEP, Funky Breathing, and Mama Gut

The exciting and most wonderful new!
I’ve been waiting 8 years to hear my daughter say those 3 little words.  Words I was never sure that I’d hear.  Using her CHAT device, Ellie Bear said “I love Mama”.  There, may have been a few tears.  Okay, a lot of tears, happy tears were shed.

Speech therapist on Ellie quarterly report: we need to meet ASAP for her IEP revision!

A few weeks ago, we received Ellie's quarterly report card.  For those of you who do not have kiddos with special needs, the "grades" are based off of Individualized Education Plan (IEP)'s goals.  You have things like met, continued progress, regression, and N/A.

I was scrolling along beaming with pride because most of her goals were close to being met already.  Then I get to the speech section - no "grades" typed in at all.  Instead, a note to meet with her ASAP.  My heart plummeted as well as the thought  of "if we need to meet ASAP, why didn't she call?".

Panicked, I approached the meeting room with the teacher and SLP with a wicked fast heart rate and mild tremors.  I apparently freaked out for nothing.  We have a new SLP this year and her goals were written by the old SLP at the end of last year.  The new SLP, Mrs. A ,said that these goals are not really appropriate - not that she couldn't maybe meet them, but not the types of things they want to her to accomplish in the Functional Communication Classroom. 

Ellie's teacher wants her annual ARD (the big IEP meeting with all teachers, therapists, vice principal, etc) because her goals are also inappropriate and pretty much met.  She based Ellie's goals off of what her FAC teacher said she could do last year.  For instance, he couldn't tell her exactly how many sight words Ellie knew and said "just a few" or something along those lines.  The FCC teacher, Ms. L, thought a good goal would be 27 sight words.  Well, when she started working with Ellie, she discovered that Ellie already knew over 500 words!  She calculated the new words she has learned since the beginning of the school year and it is already over the 27.  With the introduction of the speech device this year, the teacher is finally able to assess what Ellie truly knows and that may have been why FAC couldn't measure her true progress.  Hence why we need new goals. 

Showing Mama Bear around her classroom

 What is up with these oxygen saturations? and always trust Mama Gut

Two weeks.  That’s how long the Bear has been ill.  I was at Ellie’s school for the Thanksgiving lunch and she was coughing.  Nothing that I normally wouldn’t think too much of, but mama gut told me to take her to the nurse to get a pulse ox reading (this checks the amount of oxygen in the blood.  Normal is 97-100%).  She was hanging out at 92%.  Her inhaler helped her a bit, but she kept returning to the low 90s.  I took her to CCC the next day.  Totally anticlimactic.  I was told she might have mucus plugs in her lungs and is coughing them up. Therefore, coughing is good.  I wasn’t to give her the inhaler unless she was either 1. under 88% oxygen saturations or 2. wheezing.  She started getting better, but then spiked a few fevers off and on during Thanksgiving week.  The day before Thanksgiving, she was a snot machine, which she didn’t have before, but not worrisome.

Then, yesterday morning, her cough was bad and I checked her saturations - 88%.  So we used the inhaler.  I had her checked out at school and same thing.  The inhaler helped a bit.  I was finally called to come pick her up because she was trying to nap on the classroom floor (of course she gets home and is miss energy).  She looked horrible.  Today I took her to CCC and I noticed her lips were turning blue.  She was at 86%, but came up to 91% with the inhaler.  Her lungs had crackles (a sign of fluid in the lungs like with pneumonia).  We are to give her inhaler every 4 hours and start her on Omnicef.  If no significant improvement after 48 hours, she’ll be started on a course of steroids.  If she either 1. can’t keep her sats above 88% with the inhaler or 2. has a >101.5 fever Friday or thereafter, she needs to be seen again.  I think she’ll be fine. 

She's pretty excited because she put her PJs on all by herself
Another milestone today!!!

Is it respiratory or reflux?

Reflex vs. Respiratory - Miss Pukes-A-Lot
Ellie has a history of esophageogastroduodenitis.  That is a fancy way of saying reflux and inflammation of the stomach and upper small intestine.  See, not that exciting, but it does mean the Bear gets to take reflux meds.  Last month, Chicka Boom was puking up her bedtime meds 2-3 x a week.  Usually about 1 hour after dinner and twice it wasn't related to her meds.  Once occurred, on the table at Chuy's.  Its cough, cough, cough, cough, puke.  After 3 nights in a row of not getting her meds, I called CCC.  Of course they don't get back with me. I call GI who calls the CCC for me.  Immediate call back.  My thought is that she needs a reflux med adjustment because back in June, we did a trial of the medication and she randomly vomited and it resolved after restarting the meds.  The docs agreed with me and had the bright idea to put her on cyproheptadine aka Periactin.

Periactin is an interesting medication.  It is a prescription allergy medication (antihistamine similar to Zyrtec)m, but is also used as an appetite stimulant, migraine prevention, and treatment of delayed gastric emptying.  Ellie was on this a few years ago as an appetite stimulant.  Uh huh.  The kid has packed on the weight these past few months.  She doesn't really need to gain anymore.  Anyway, fun fact about antihistamines: they help with nausea.  Histamine is what signals the release of gastric acid in the stomach to break down food.  If you block the release of histamine, there is less gastric acid to reflux back into your esophagus.  It seems to be helping.

I think that is all for now!  I am looking forward to hearing more of those "I love Mamas" and a future visit from my parents and my brother, Matt.