Tuesday, April 24, 2018

ADHD Psychiatric Update and The Laundry Thief


Can you believe it?  TWO blog posts in one month!  This is amazing given how busy we have been.  There has been a ton of medical crap going on with Ellie.  Nothing serious, but I am tired.  She is tired. It sucks.  Yes, I am complaining.  I am only going to update you on the latest nonsense (you know skipping over the whole December ER visit due to low oxygen saturations) and move right into what has been going on these past few weeks.

First off, how about a little humor? We have a laundry thief in the house.  Ellie has this great obsession with her grey pants and grey shorts.  As in, they are the only articles of clothing she wants to wear.  As soon as they make it through the dryer cycle, she is stripping down and putting those grey shorts on.  Yes, for all you people inundated with snow, it is freaking hot out here in Texas - hence the shorts.

Anyway, Ellie thinks she is so sneaky. She will put the dirty shorts back into her drawer as soon as she puts on her PJs, trying to trick me into thinking that they are clean.  She also has the propensity to remove them from the dirty basket in the laundry room.  She discovered that I was hiding them in the washing machine so then she filched them and again put them back into the drawer.  I have now taken to hiding them in the laundry basket in the master bedroom or in the dryer.


ADHD vs. Comorbid Psychiatric Disorder
A few months ago, I posted about finding the right ADHD medications for Ellie.  We opted to take her off the Risperdal due to rapid weight gain and we had been trying other stimulants.  She had uncontrolled muscle movements and tics from Vyvanse and Adderall XR

We have tried adding in medications that used to work well for her to see if they would help again now that she has been off them for a while. Unfortunately, she was experiencing some significant adverse reactions that we did not see back whens she was on these medication previously.  I have absolutely no idea why she is responding so differently this go around. (No, it isn’t puberty).  She is now back on Risperdal, which is helping a little bit for her hyperactivity only.  We cannot keep her on this long term as she is back to rapidly gaining weight. (Weight gain for Ellie is not bad given her history of failure to thrive.  The concern is that it is really rapid - several pounds over a few weeks rather typical pediatric weight gain over a year.)

In addition to not having her ADHD under control, her thyroid is fluctuating and there are several changes at school.  We recently started to see behaviors that we have never seen before as well as a significant increase in hyperactivity even with an increase in Risperdal.

Neurology and I have both decided that it is time to consult with a pediatric psychologist.  It will be a while before she can be seen, but we are hoping that her doctor can pull some strings and get a phone consult.






DNA Gene Testing for Psychiatric Medication

A few weeks ago, during her f/u neurology appt, we swabbed her cheek for DNA testing.  Most studies have been performed on adults undergoing treatment for depression.  Certain genetic factors can affect how certain enzymes metablize various medications.  Medication recommendations are based off these results - use as directed; moderate gene-drug interactions; and significant gene-drug interactions.  The studies, on average, show that only 30% of those participants in the DNA tested group exhibited better control of their depressive symptoms than those in the non-DNA group.  Still, we were desperate and will take that 30% chance.

There are several gene companies out there such as GenoSight, Kalios, GenoMind, etc.  I originally contacted Dynamic DNA Laboratories as they do everything in house and you do not need a doctor’s prescription to run the test (they have their own staff review the results with you).  I spoke with their scientist and he stated that Ellie’s extra 21st chromosome does not affect the results.  Our neurology office uses GeneSight so we went with them.  It is important to note that many insurance companies consider the DNA testing for Medication Management to be experimental and with thus not cover such testing.  The average out-of-pocket expense is ~$300.

We just got the results and it was very disappointing.  While she should be able to tolerate the following as directed: all antidepressants, hypnotics (ie Xanax), antipsychotics, and mood stabilizers, there is only 1 (yes, I said one), ADHD medication that fell under the “used as directed” category.  All other medications have moderate to significant DNA interactions.  The good news as that we will no longer play Russian roulette with medications, but what if this one medication doesn’t work? 

Apparently, Ellie’s gene report looked “unusually empty” so the neuro clinic called GeneSight.  According to their lab, Ellie is the lucky 0.7% where the report comes back like that.   I mean, of course she is.  Why can’t anything ever be simple when it comes to The Bear?!


Ellie has been on methylphenidates, amphetamine salts, detroamphetamine, lisdexamfetamine, and guanfacine.  She used to tolerate amphetamine salts and guanfacine (the short acting) - all within the moderate to significant gene-drug interaction She is currently on clonidine and is experiencing no issues even though it is listed under moderate gene-drug interaction.









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Tuesday, April 17, 2018

The IEP Meeting and Ellie Antics


Yes, I know that it has been months.  So much has happened in the Theurer household and I won’t be able cover it all unless I feel like writing a novella. 



The IEP Meeting:

Back in January, we had Ellie’s IEP meeting. Yep, I said January.  I told you that it has been a while since I last posted.  It went well.  There were no surprises as I meet with the teacher and speech therapist beforehand to help develop goals.  We are really going to push Ellie this year with her reading, communication, and mathematics.  We have high expectations for her and we have no doubt she will meet or come close to meeting her new goals within the next year. 

In fact, her end of March report card showed that she already mastered 3 of her 4 math goals and  that she is halfway through some of her other goals - that’s all within 2 months!  As for fine motor skills, we added back in 1:1 OT.  We also removed her handwriting goal because she is not progressing.  Instead, we are going to teach her how to type on the computer and on her speech device.  The teacher and I are still going to work on writing her first and last name so that she can write her name on school work and sign documents.  

A miracle occurred, the speech therapist added on MORE 1:1 speech therapy minutes.  I know that y’all are shocked because us parents usually have to fight for this.  Yet, I didn’t even ask for more minutes - talk about a pleasant surprise!

Such a good girl at the dentist!


A Thief in the Night

Ellie seems to be doing well with her fine motor skills.  She is actually aspiring to be a cat burglar.  Her ABA center has a keypad to the door that leads from the waiting room to the therapy rooms.  The little turkey watched the therapist enter the code and on her 3rd session, the stinker butt unlocked the door.  That’s right, Turkey Bear figured out the code.  Needless to say, the door now has a new code.

Throw Back!



Little Miss Talks-A-Lot
Ellie has had a communication explosion.  Kyla has been Ellie’s respite care provider for 20 months now.  Last month, instead of calling her “uh”, she is now “Kai - Uh”!  She is also trying to say more words and some of them are becoming more understandable.  I do believe that her speech device has played a big role in expanding her vocalizations.  

She also has the propensity to talk in her sleep when I go to put on her oxygen nasal cannula. 

What she says in her sleep: Dada, Pig [her favorite restaurant], zone bar, horse.  Not once has she said “mama”.  I fall below food items.


Somebody loves the donkeys, Honky and Tonky













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Wednesday, March 21, 2018

WDSD: The Many Faces of Down Syndrome

Today is World Down Syndrome Day!  While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else.  They look like their family member and they have their on interests and strengths.  Today, I would like to share with you the community that I became a part of when my daughter, Ellie, was born with Down syndrome.


Ava is 10 years-old and loves reading, art, music, and dance.
In this picture, she is working on her Molly Brown project for her Colorado History class.


Chloe enjoys dancing, acting, and pretend play.



Hannah loves all things musical, especially dancing. She's being to love showing her independence.



Kyshon is 10 years-old



Kylie is 18 years-old and enjoys skiing, basketball, and swimming.  She is warm-hearted and kid and occasionally fresh!



Let's give a big smooch back to Miss Grace!  She loves dancing to music with beats, tennis, and swimming.  She has a great sense of humor and enjoys pranking her family.  She is currently learning  how to play guitar and is a voracious reader and good student.
(I asked her mom about some of Grace's pranks.  Ooh that girl is a cheeky little thang!)



Sydney is 13 years-old and loves gymnastics, dance lessons, and long walks on the beach.



Ruby is 7 years-old and loves bowling, playing with dogs, dancing, and ice cream!




Kennedy is 13 years-old and enjoys dancing, acting, modeling and shopping for shoes and purses.




Ty is 10 years-old.  He loves all sports in the Special Olympics, watching football - especially the Cowboys and Longhorns (As a fellow Texan here: "Hook 'Em")



Evie Grace loves books, Sesame Street, and Mickey Mouse.




Hailey is 11 years-old and loves to watch Barney on the iPad.




Hailey loves Disney World (especially the Princesses), all things Frozen, and Shopkins. She also loves her two older brothers to pieces.




Ellie is 8 years-old and full of sass!  She loves horseback riding, school (yes, she's and odd duck), Mickey Mouse, trains, dancing, and Nutella.  What she does not like - her glasses!



Julian is a 7 year- old who loves to read, write, and swim.  He is also a big fan of chocolate ice cream!



Kimber enjoys singing, dancing, and doing her own hair and makeup. 



Clara (pictured with her sister, Rowan) is 5 years-old and loves dance, listening to the Beatles, and all things Coco. Most of all, she loves to play with her twin sister!




Aasher, with his awesome yellow shoes, is 8 years-old and loves baseball, swimming, movies, his Daddy, and Disney World




Courtney is 23 years- old and loves cheer, music, drawing, her brothers and watching children. 
(Do you think Courtney would come and babysit Ellie Bear?)




Lila loves learning about animals!  She also enjoys reading, dancing, and singing.



Lexi enjoys writing, singing, dancing, and cooking (can she come over to my house???).  She also loves doing flips.




Dewey is 23 years-old and loves Minions, Trolls, swimming and running track and field.


Sammi is 11 years-old and is a big fan of basketball, YouTube, reading and being a good mom to her dolls.


Levi, pictured with his brother Adam, loves to read Pete the Cat, play with cats, and play outside.



Darya loves music, Barney, hot dogs (check out her awesome costume!), the beach, and hamming it up for an audience.


Check out that smile!   Camden is 5 years-old and loves the pool, basketball, and Peppa Pig



Emily is 8 years-old and enjoys gymnastics, dance, horseback riding, and Disneyland!


Alexander is 23 years-old and loves competitive swimming and the Special Olympics. He also enjoys listening to music, playing Call of Duty, and hanging out with friends.



Wyatt loves the beach and church.  He also enjoys running track, swimming, and playing with PlayMobil.



Summer is a 3 year-old who always has a smile on her face and always lights up a room.  She loves singing and dancing.


Berkeley is 12 years-old and loves cheerleading.





12/27/1958 - 12/14/2012
This blog post is in loving memory of my Aunt Peggy.  Peggy loved bowling, swimming, and John Denver.  She passed away just a few days before her 54th birthday in 2012.  She was a beloved daughter, sister, aunt, and great aunt.  Peggy, you are forever loved and forever missed.





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Wednesday, February 14, 2018

The Guilt


guilt
…°ilt/
noun
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.

Chemex


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