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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